Overcoming Barriers to Access and Provision of Dental Care for Patients with Special Needs in the Australian Public Dental System

Overcoming barriers to access and provision of dental care for patients with special needs in the Australian public dental system

Mathew Albert Wei Ting Lim

BDS, BScDent (Hons), MRACDS, FSCD ORCID ID: 0000-0003-3712-0519

Doctor of Clinical Dentistry / Doctor of Philosophy

January 2021

Melbourne Dental School, Faculty of Medicine, Dentistry, and Health Sciences University of Melbourne

This thesis is submitted in total fulfilment of the requirements for the degree of Doctor of Philosophy, which will be completed as part of the conjoint degree of Doctor of Clinical Dentistry / Doctor of Philosophy

Abstract:

Background

Individuals with special needs report being unable to find oral health professionals with adequate experience who are willing to treat them despite the recognition of a dedicated dental specialty, special needs dentistry, to advocate for and assist with their oral health treatment needs.

Aims:

The aims of this study were:

• To develop a profile of the patients receiving specialist dental care in special needs dentistry around Australia, • To explore the challenges associated with providing dental care to individuals with special needs in the public dental system, and • To identify ways to overcome barriers to treating individuals with special needs.

Methods:

A cross-sectional clinical audit of patient appointments was conducted at two of Australia’s largest and most well-established specialist units in special needs dentistry: the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne and the Special Needs Unit at the Adelaide Dental Hospital, as well as specialised dental clinics operated by Oral Health Services Tasmania; the Special Care Dental Units. Quantitative methods were used to analyse patient demographics, referrals, medical profiles, and treatment received.

Qualitative methods were used to explore the views of specialists in special needs dentistry and other oral health professionals in relation to the challenges they faced in providing care to individuals with special needs. Semi-structured interviews and focus groups were employed to understand their perspectives towards the factors that influenced specialist services and the willingness of clinicians to treat patients with special needs.

Results:

Inconsistencies were noted between the patient cohorts being treated at the two specialist clinics that may have reflected differences in referrals, available services and facilities, and the local oral health care systems. Specialists in special needs dentistry felt that the biggest challenge facing specialist services was the strain placed on the limited specialist workforce and resources by referrals from oral health professionals not willing to treat individuals with special needs.

Oral health professionals working in the primary care setting felt that the two most significant barriers to providing care for patients with special needs were insufficient training and experience in special needs dentistry or a lack of support within their work environment. Additional education and training, opportunities for networking with more experienced clinicians, and a more supportive work environment were identified as ways to overcome these barriers.

Additional support provided by specialists in special needs dentistry, in the form of a network arrangement or visiting specialist, were found to improve the willingness of oral health professionals to treat patients with special needs.

Conclusions:

The profile of patients receiving dental care from specialist dental clinics in special needs dentistry is variable and largely influenced the willingness of oral health professionals to treat them. Providing additional support to these oral health professionals, to overcome their perceived lack of training and experience and barriers within the public dental system, will be vital to improving the willingness of clinicians to treat patients with special needs and addressing access to care issues for this population.

Student Declaration

I, Mathew Albert Wei Ting Lim, declare that:

(i) This thesis comprises only of my original work towards the Doctor of Clinical

Dentistry / Doctor of Philosophy except where indicated in the preface;

(ii) Due acknowledgement has been made in the text to all other materials

used; and

(iii) The thesis is fewer than the maximum word limit in length, exclusive of

tables, maps, bibliographies, and appendices.

Date: Friday 22 January 2021

Preface

Publications and author contributions

Manuscript 1 Patient referrals to special needs dental units in Tasmania, Australia Authors: Mathew AWT Lim and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Borromeo G ✓ ✓ ✓

Article status: Published by Journal of Disability and Oral Health, 2017 Lim MAWT, Borromeo GL. Patient referrals to special needs dental units in Tasmania, Australia. Journal of Disability and Oral Health 2017; 18(3): 87-94

Manuscript 2 Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia Authors: Mathew AWT Lim and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Borromeo G ✓ ✓ ✓

Article status: Published in International Journal of Medical Research and Health Sciences, 2017 Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences 2017; 6(6): 123-131

Manuscript 3 Utilisation of dental services for people with special health care needs in Australia Authors: Mathew AWT Lim, Sharon AC Liberali, and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Liberali, S ✓ ✓ Borromeo G ✓ ✓ ✓

Article status: Published in BMC Oral Health, 2020 Lim MAWT, Liberali SAC, Borromeo GL. Utilisation of dental services for people with special health care needs in Australia. BMC Oral Health 2020; 20: 360. https://doi.org/10.1186/s12903-020-01354-6

Manuscript 4 Oral health of patients with special needs requiring treatment under general anaesthesia Authors: Mathew AWT Lim and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Borromeo G ✓ ✓ ✓

Article status: Published in Journal of Intellectual and Developmental Disability, 2018 Lim MAWT, Borromeo GL. Oral health of patients with special needs requiring treatment under general anaesthesia. Journal of Intellectual and Developmental Disability 2018 May 29: 1-6.

Manuscript 5 Dental treatment for patients with special needs provided by domiciliary dental services Authors: Mathew AWT Lim and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Borromeo G ✓ ✓ ✓

Article status: Submitted for publication to Journal of Dental Science, Oral and Maxillofacial Research on 16 December 2020

Manuscript 6 Challenges associated with providing specialist dental care for individuals with special health care needs Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Liberali, S ✓ ✓ Calache, H ✓ Parashos, P ✓ Borromeo G ✓ ✓ ✓

Article status: Submitted for publication to Medicina oral patologia oral y cirugia bucal on 15 January 2021

Manuscript 7 Perceived barriers encountered by oral health professionals in the Australian public dental system providing dental treatment to individuals with special needs Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Liberali, S ✓ ✓ Calache, H ✓ Parashos, P ✓ Borromeo G ✓ ✓ ✓

Article status: In revision following peer review by Special Care in Dentistry

Manuscript 8 Perspectives of the public dental workforce on the dental management of people with special needs Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Liberali, S ✓ ✓ Calache, H ✓ Parashos, P ✓ Borromeo G ✓ ✓ ✓

Article status: In revision following peer review by Australian Dental Journal

Manuscript 9 Specialist networks influence clinician willingness to manage individuals with special needs Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Liberali, S ✓ ✓ Calache, H ✓ Parashos, P ✓ Borromeo G ✓ ✓ ✓

Article status: Submitted for publication to JDR Clinical and Translational Research on 12 January 2021

Manuscript 10 The impact of collaboration with specialists on the willingness of oral health professionals to treat people with special needs Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo Study design Data collection Data analysis Manuscript Lim M ✓ ✓ ✓ ✓ Liberali, S ✓ ✓ Calache, H ✓ Parashos, P ✓ Borromeo G ✓ ✓ ✓

Article status: Submitted for publication to Qualitative Health Research on 17 January 2021

Funding sources

Mathew Lim would like to acknowledge the financial support provided through:

• The Australian Government Research Training Program Scholarship; • The University of Melbourne Rowden White Scholarship; and • The Postgraduate Research Grant provided by the Melbourne Dental School, Faculty of Medicine, Dentistry, and Health Sciences, University of Melbourne.

Acknowledgements

In submitting this thesis, I would like to express my deep gratitude to all of those who have supported me on this journey. The acknowledgements I include here are by no means exhaustive. There are far too many people to name individually and I wouldn’t trust my memory after the late nights of corrections and trying to format this thesis to satisfy my OCD. I do, however, mention those who are at the forefront of my mind as I finish compiling this work, which has been a large proportion of my life for the last few years.

I express my gratitude to my supervisors, past and present, the members of my PhD advisory committee, and other academic and support staff at the Melbourne Dental School.

Of these individuals, I extend a further heartfelt thanks to Associate Professor Mina Borromeo, Associate Professor Sharon Liberali, Professor Hanny Calache, and Professor Peter Parashos whose contributions and insights were what made the difference and elevated my work to produce what is now this body of research.

On a more personal note, to Mina; thank you for joining me on this journey from start to finish. Your life work in this area is what inspired this research and I hope that our findings set the foundations for an important part of your legacy. Thank you for delaying your (full) retirement to see this through with me, but I am certain now that both you, and your red pen, deserve a well-earned rest.

I have been so fortunate for my research to have had the breadth to include the work being done in special needs dentistry in health services across this country. As a result,

I acknowledge Dental Health Services Victoria, the South Australian Dental Service, Oral Health Services Tasmania, Link Health and Community, Carrington Heath, and Top End Oral Health Services for their support of my PhD project, and to their staff who provided assistance to me along the way. In addition, I would like to thank the clinicians of these services who volunteered their time to participate in my research and offer insights into their experiences in managing these patients.

In particular, to my colleagues at Oral Health Services Tasmania; I left Hobart almost 6 years ago to the day to embark on this new journey. I will never forget the support you provided me in the early stages of my career and for the opportunities you gave me to grow. I am only here now because you helped encourage me to explore my interest in special needs dentistry, even though, at the time, I was never sure if I was actually doing more harm than good. I dedicate this body of work to not only the patients who entrusted me with their care, but to you, and the many other clinicians (and dental assistants, who are by no means any less important) around this country who ensure these patients are able to receive the care they need. I hope that by starting a discussion from this research that I can do justice to the work that you do and am able to find a way to support you to just like how you supported me.

On that note, to Dr Ioan Jones and Professor Nicky Kilpatrick; you have both been ardent supporters of my career and the projects I have been engaged in at what has always seemed like the most crucial times. For this, and your wisdom, guidance, friendship, and the laughs we have shared, I will forever be indebted.

I also extend a wider thanks to my professional colleagues, and especially to the staff and patients at The Alfred, the Royal Melbourne Hospital, and Northland Dental Group. I have appreciated your understanding and support for the many times when my PhD has directly competed with my clinical commitments. 13

Likewise, to my specialist colleagues at the Australian and New Zealand Academy of Special Needs Dentistry, and in particular, to those who shared their specialist training journey with me; thank you for your unwavering support and your enthusiasm towards my project, especially at the times when I couldn’t feel much enthusiasm myself. I am privileged to count you all as colleagues and appreciate your guidance and friendship. I hope that this body of work helps recognise the work many of you have dedicated your careers to and are passionate about, and allows us to continue to grow as a specialty together.

My final acknowledgement, which is certainly last, but not least, goes to my family: Mum, Dad, Nat, Justine, and Jonathan. But also to my extended family; those friends who are like brothers and sisters: Danny, Nidhi, Clau, Linda and Johnny, and Tami and Antonio. The ways in which you have been there when I most needed you along this journey are too many to count and name; but I am certain that I would not be here, writing these acknowledgements today, if it were not for the part you played individually and collectively. Maybe, one day, when you can feel how heavy this thesis is when bound, you’ll not only be able to see exactly what I was working on for all those years, but also understand the weight that you helped me carry. Thank you for always believing in me. I am only able to do what I can because of all of you.

Table of Contents

Abstract: ...... 2 Student Declaration ...... 5 Preface ...... 6 Publications and author contributions ...... 6 Funding sources ...... 11 Acknowledgements ...... 12 Table of Contents ...... 15 List of Tables, Figures, and Abbreviations ...... 19 Chapter 1. Literature Review ...... 27 1. What is special needs dentistry? An overview...... 27 1.1 The evolution of special needs dentistry: an international perspective ...... 27 1.2 “Special care dentistry” or “Special needs dentistry”? ...... 32 1.3 Special Needs Dentistry in Australia ...... 33 2. What constitutes special needs dentistry? Defining the patient with special needs: .... 36 2.1 Concepts, definitions, and prevalence of disability ...... 36 2.2 Intellectual disability ...... 40 2.3 Physical disability ...... 47 2.4 Sensory impairments ...... 50 2.5 “Medically-compromised” patients ...... 53 2.6 Psychiatric conditions ...... 80 2.7 What is a patient with “special needs”? ...... 85 3.0 Special needs dentistry and the health care system ...... 86 3.1 International models of health care ...... 86 3.2 Health care in Australia ...... 92 3.3 Oral health care for those with special needs in Australia ...... 95 4. Building the specialty of special needs dentistry: training and workforce ...... 101 4.1 Training specialists in special needs dentistry ...... 101 4.2 Special needs dentistry programs in Australia ...... 103 4.3 Registration requirements for special needs dentists in Australia ...... 104 4.4 Workforce in special needs dentistry ...... 104 5. Dental service utilisation and individuals with special needs ...... 105 5.1 Regularity of dental visits by individuals with special needs in Australia ...... 105 5.2 Referrals to specialist services in special needs dentistry in Australia ...... 107 15

5.3 Barriers to accessing dental care experienced by individuals with special needs in Australia ...... 108 6. Concluding remarks and future directions ...... 111 7. References ...... 113 Chapter 2. Profile of patients referred to and treated at specialised clinics for individuals with special needs ...... 127 Introduction: ...... 127 Patient referrals to special needs dental units in Tasmania, Australia ...... 129 Abstract ...... 130 Introduction ...... 130 Material and Methods...... 132 Results ...... 133 Discussion ...... 136 Conclusions ...... 143 References ...... 144 Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia ...... 147 Abstract ...... 148 Introduction ...... 149 Methods ...... 150 Results ...... 151 Discussion ...... 155 Conclusion ...... 162 References ...... 163 Utilisation of dental services for people with special health care needs in Australia ...... 167 Abstract ...... 168 Background...... 169 Methods ...... 170 Results ...... 172 Discussion ...... 179 Conclusions ...... 185 References ...... 187 Oral health of patients with special needs requiring treatment under general anaesthesia189 Abstract ...... 190 Introduction ...... 190

Material and methods ...... 192 Results ...... 193 Discussion ...... 195 Conclusion ...... 198 References ...... 199 Dental treatment for patients with special needs provided by domiciliary dental services 203 Abstract ...... 204 Introduction ...... 205 Material and Methods...... 206 Results ...... 207 Discussion ...... 210 Conclusions ...... 218 References ...... 219 Chapter 3. Barriers within specialist services to providing dental care for individuals with special needs ...... 222 Challenges associated with providing specialist dental care for individuals with special health care needs ...... 223 Abstract ...... 224 Introduction ...... 224 Research process ...... 226 Results ...... 227 Discussion ...... 232 References ...... 236 Chapter 4. Barriers experienced by oral health professionals when providing dental care for individuals with special needs ...... 238 Perceived barriers encountered by oral health professionals in the Australian public dental system providing dental treatment to individuals with special needs ...... 239 Abstract ...... 240 Introduction ...... 240 Methods ...... 242 Results ...... 243 Discussion ...... 253 Conclusion ...... 258 References ...... 258 Perspectives of the public dental workforce on the dental management of people with special needs ...... 261 17

Abstract ...... 262 Introduction ...... 262 Materials and methods ...... 263 Results ...... 265 Discussion ...... 274 Conclusions ...... 280 References ...... 281 Chapter 5. Supporting clinicians and improving their willingness to manage patients with special needs ...... 283 Specialist networks influence clinician willingness to manage individuals with special needs ...... 284 Abstract: ...... 285 Introduction ...... 286 Materials and methods ...... 288 Results ...... 289 Discussion ...... 300 Conclusions ...... 306 References ...... 307 The impact of collaboration with specialists on the willingness of oral health professionals to treat people with special needs ...... 309 Abstract: ...... 310 Introduction ...... 310 Method and Materials...... 311 Results ...... 313 Discussion ...... 324 Conclusion ...... 329 References ...... 330 Chapter 6. Discussion ...... 331 References ...... 357 Appendix A. Human research ethics committee approval documents ...... 364 Appendix B. Data collection form for clinical audit of dental services ...... 380 Appendix C. Letters of invitation, recruitment flyers, and participant information and consent forms ...... 389 Appendix D. List of presentations ...... 399

List of Tables, Figures, and Abbreviations

Chapter 1

Table 1: Levels of disability and prevalence in the Australian population

Table 2. Prevalence of disability by state or territory

Table 3. Characteristics of individuals with intellectual disability based on diagnosed level of disability and IQ

Table 4. Reported prevalence of intellectual disability with available information on data sources/methods and the definitions used

Table 5. The American Society of Anesthesiologists Physical Status (ASA PS) Classification System (Oct 2014)

Table 6. Results by ASA PC risk score categories with descriptions of each categories and the possible implications for dental treatment

Table 7. Incidence (millions) of selected conditions by WHO regions, 2004

Table 8. Prevalence (millions) of selected conditions by WHO regions, 2004

Table 9. Leading causes of burden of disease (Disability Adjusted Life Years (DALYs))

Table 10. Mostly costly disease groups in Australia and New Zealand based on percentage of total health expenditure 2008-09

Table 11. Number of people in Australia Bleeding Disorders Registry (ABDR) 2017-18 and bleeding condition

Table 12. Estimated age-standardised incidence rates (per 100 000) for cancer diagnosis site and by continent in 2018

Table 13. Organ transplantations completed in Australia, 2019

Table 14. Total number of subsidised (PBS) prescriptions in Australia by medication group, 2015 19

Table 15. Top 10 medications by prescription count in Australia, 2015

Table 16: Per-capita spending (USD) on health care for OECD nations, 2019

Table 17. Specialists in special needs dentistry by state/territory of principle practice, 2020

Table 18. Frequency of irregular dental attendance amongst adults with special needs in South Australia

Table 19. Frequency of dental visiting patterns by residential setting amongst adults with special needs in South Australia

Table 20. Problems by carers regarding access to dental care for individuals with disabilities

Chapter 2

Manuscript 1: Patient referrals to special needs dental units in Tasmania, Australia

Table 1. Appointments and valid referrals by location of the Special Care Dental Unit.

Table 2. Patient demographics for referrals to Special Care Dental Units in Tasmania across all dental services.

Table 3. Referrals to Special Care Dental Units according to primary reason for referral.

Table 4. Referrals to Special Care Dental Unit for management of oral implications of medications grouped by medical condition.

Manuscript 2: Special Needs Dentistry: Interdisciplinary management of medically- complex patients at hospital-based dental units in Tasmania, Australia

Table 1. Patient demographics for appointments at Special Care Dental Units in Tasmania. 20

Figure 1. Number of medical conditions reported in the medical history of patients with appointments at Special Care Dental Units in Tasmania.

Table 2. Medical conditions of patients with appointments at Special Care Dental Units grouped by body system using the World Health Organization International Classification of Diseases 10 (ICD-10)

Figure 2. Number of medications reported in patient medical histories at Special Care Dental Units across Tasmania.

Table 3. Medications reported in the medical histories of patients with appointments at Special Care Dental Units categorised using the World Health Organization Anatomical Therapeutic Chemical and Defined Daily Dose (ATC/DDD) classification by number of patients taking a medication group and by number of medications prescribed

Manuscript 3: Utilisation of dental services for people with special health care needs in Australia

Table 1. Number of appointments and patients across the Royal Dental Hospital of Melbourne (Melbourne, Victoria) and the Special Needs Unit (Adelaide, South Australia) between August 1, 2015 and August 31, 2015 divided by clinic and type of oral health professional.

Table 2. Distribution of age of patients (in years) treated at Royal Dental Hospital of Melbourne (Melbourne, Victoria) and Special Needs Unit (Adelaide, South Australia) clinics categorised by age group (n (%)) and mean age (mean (95% CI)).

Table 3. Eligibility for public dental care and consent status compared between the Royal Dental Hospital of Melbourne (RDHM) in Melbourne, Victoria and Special Needs Unit (SNU) in Adelaide, South Australia.

Table 4. Comparison of reason for referral (n (%)) and medical histories between individual specialist clinics and all appointments with the Royal Dental Hospital of Melbourne (RDHM) in Melbourne, Victoria and Special Needs Unit (SNU) in Adelaide, South Australia

Table 5. Proportion of patients treated at the Royal Dental Hospital of Melbourne (RDHM) in Melbourne, Victoria and Special Needs Unit (SNU) in Adelaide, South Australia with medical conditions grouped by body system affected.

Table 6. Dental treatments completed at appointments (n (%)) categorised by specialist dental clinic and overall for the Royal Dental Hospital of Melbourne (RDHM) in Melbourne, Victoria and Special Needs Unit (SNU) in Adelaide, South Australia.

Manuscript 4: Oral health of patients with special needs requiring treatment under general anaesthesia

Table 1. Summary of demographics and treatment details of special needs patients treated at the Royal Dental Hospital of Melbourne Day Surgery Unit.

Manuscript 5: Dental treatment for patients with special needs provided by domiciliary dental services

Table 1. A comparison of the characteristics of patients treated by the domiciliary dental service and the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne, Victoria, Australia.

Table 2. Dental treatment completed on domiciliary visits conducted by the Integrated Special Needs Department, Royal Dental Hospital of Melbourne.

Table 3. Treatment completed on domiciliary visits by clinician type.

Chapter 3

Manuscript 6: Challenges associated with providing specialist dental care for individuals with special health care needs

No figure or tables

Chapter 4

Manuscript 7: Perceived barriers encountered by oral health professionals in the Australian public dental system providing dental treatment to individuals with special needs

Table 1. Qualifications of participants across health services

Figure 1. ‘Ability and confidence of clinician’ theme determined from inductive thematic analysis

Figure 2. ‘Lack of support for clinicians’ theme determined from inductive thematic analysis

Manuscript 8: Perspectives of the public dental workforce on the dental management of people with special needs

Table 1. Distribution of participants across registrations categories and health services

Chapter 5

Manuscript 9: Specialist networks influence clinician willingness to manage individuals with special needs

Figure 1: Question guides for interviews and focus groups

Figure 2. SWOT analysis of prominent themes from analysis of the views of general dentists involved in the Special Needs Network

Manuscript 10: The impact of collaboration with specialists on the willingness of oral health professionals to treat people with special needs

Figure 1: Question guides for interviews

Abbreviations and acronyms

ABS: Australian Bureau of Statistics

ACT: Australian Capital Territory

ADA: Australian Dental Association

ADH: Adelaide Dental Hospital

AIHW: Australian Institute of Health and Welfare

ANZANSD: Australian and New Zealand Academy of Special Needs Dentistry

ASD: Autism spectrum disorder

ASGS: Australian Statistical Geography Standard Remoteness Areas Classification

ATC/DDD: Anatomical Therapeutic Chemical and Defined Daily Dose classification

CI: Confidence intervals

DALY: Disability Adjusted Life Year

DHSV: Dental Health Services Victoria

EUA: Examination under anaesthesia

FTA: Failed to attend appointment

GA: General anaesthesia

GEM: Geriatric Evaluation and Management

GORD: Gastroeosphageal reflux disease

GP: General (medical) practitioner

ICD-10: International Classification of Diseases Version 10

ID: Intellectual disability

ISND: Integrated Special Needs Department (Royal Dental Hospital of Melbourne)

LA: Local anaesthesia mPOA: Medical power of attorney

MRONJ: Medication-related osteonecrosis of the jaw (previously Bisphosphonate- related osteonecrosis of the jaw)

NOAC: Novel Oral Anti-coagulant

NSW: New South Wales

NT: Northern Territory

OCD: Obsessive compulsive disorder

OHST: Oral Health Services Tasmania

PTSD: Post-traumatic stress disorder

RACDS: Royal Australasian College of Dental Surgeons

RDHM: Royal Dental Hospital of Melbourne

SA: South Australia

SADS: South Australian Dental Service

SCDU: Special Care Dental Units (Oral Health Services Tasmania)

SND: Special needs dentistry / special care dentistry

SNU: Special Needs Unit (Adelaide Dental Hospital)

SPSS: Statistical Product and Service Solutions (Stastical software product from IBM Inc, Armonk NY, USA)

TIA: Transient ischaemic attack

TQEH: The Queen Elizabeth Hospital (Adelaide, South Australia)

WA: Western Australia

WHO: World Health Organization

Chapter 1. Literature Review

1. What is special needs dentistry? An overview.

1.1 The evolution of special needs dentistry: an international perspective

Special needs dentistry is a relatively new dental specialty that only enjoys recognition in certain jurisdictions (1). Despite this, the provision of care to individuals with special needs has had a long and varied history internationally, resulting in different approaches to their care across the world.

The United States of America (USA) has had a long record of advocacy for the needs of these groups. Professional dental organisations that individually recognise the needs of older adults, individuals with disabilities, and those with complex medical conditions have existed since the 1950s and 1960s (2). In 1981, the journal Special Care in Dentistry was formed from the amalgamation of the individual journals of the American Association of Hospital Dentists, the Academy of Persons with Disabilities, and the American Society for Geriatric Dentistry. This is recognised as the first use of the term “special care” in the dental profession (1).

In 1987, following the formation of this journal, the Federation of Special Care Organizations in Dentistry was formed to develop closer ties between the American Association for Hospital Dentists (AAHD), the Academy of Dentistry for People with Disabilities (AAPD), and the American Society for Geriatric Dentistry (ASGD). Formal amalgamation of these organisations occurred in 2001 to form what remains the peak body for dental professionals working with these populations in North America, the Special Care Dentistry Association (SCDA) (2).

The Special Care Dentistry Association defines special care dentistry as “that branch of dentistry that provides oral care services for people with physical, medical, developmental, or cognitive conditions which limit their ability to receive routine dental care” (3). This definition is often identified as the first official definition provided for special care dentistry. In recognition of the three boards that were amalgamated, this definition encompasses all these subpopulations and that the conditions involved may necessitate adaptations to their treatment provision.

Interestingly, special care dentistry is not recognised as a registrable specialty in either Canada or the USA (4-6). However, in September 2020, oral medicine was recognised as a registrable specialty in the USA (7). Of note is that the definition provided by the National Commission on Recognition of Dental Specialties and Certifying Boards describing oral medicine as the dental specialty “responsible for the oral health care of medically complex patients and for the diagnosis and management of medically- related diseases, disorders and conditions affecting the oral and maxillofacial region” partially includes the scope of special care dentistry in other countries (7).

The first country to formally recognise this area of dentistry as a specialty was Brazil in 2001 (8). In this case, however, the Conselho Federal de Odontologia (Brazilian Dental Council) decided to establish two separate specialties: special care dentistry and geriatric dentistry (8-10). The Brazilian Dental Council defined special care dentistry as “the field of dental practice that addresses the needs of patients who require treatment to accommodate their physical, mental, or medical problems” (9). In contrast, the specialty of geriatric dentistry, or gerodotology, focuses on the oral health needs and treatment of older adults in the population (10, 11).

Until today, Brazil remains the only country to have recognised two separate specialties and separated this population group into two areas of care, largely defined 28

by age (12). In this case, geriatric dentistry is largely concerned with how ageing may cause changes to oral health and treatment provision whereas the focus of special care dentistry is the impact of physical, mental, and medical problems (8, 9, 12). The definition also differs subtly from those used in North America in that Brazil identifies individuals with “mental problems” as part of the special care group. This contrasts with the American definition that uses the term “developmental and cognitive” problems. This may be reflective of the separation of the two specialties in Brazil where groups affected by cognitive issues may also be divided based on the cause and timing of the changes in cognition. Furthermore, the more general use of the term “mental problems” may demonstrate a further evolution in the definition to recognise the influence that other mental health or psychiatric problems may have on the provision of dental care and thus identifying a new population subgroup to be considered.

New Zealand, similar to North America, has had a long-standing commitment to the provision of dental care to special needs populations. The New Zealand Hospital Dental Surgeons Association was originally established in 1949 with members engaged in areas of the specialty traditionally referred to as “Hospital Dental Surgeons” (13). In 2002, a New Zealand Society of Hospital and Community Dentistry was established to reflect changes to the provision of treatment and terminology of the specialty (1, 13). Traditionally, services for these subpopulations were provided in a hospital setting, catering to the needs of those with complex medical conditions. The change in terminology reflected a greater involvement of other public dentists in the community and the provision of treatment for other special needs populations (13).

Consequently, definitions of special needs dentistry in New Zealand reflected these paradigm shifts when it became a recognised dental specialty in 2002 (14). The New Zealand Dental Association defined special needs dentistry as an area of dentistry that “deals with patients where intellectual disability, medical, physical or psychiatric 29

conditions require special methods or techniques to treat oral health problems, or where such conditions necessitate special dental treatment plans” (14).

Given equivalency of dental registration standards across the two countries, the movement towards recognition of special needs dentistry as a registrable specialty qualification in New Zealand was mirrored by similar moves towards formal recognition of the specialty in Australia in 2003 (15). The Royal Australasian College of Dental Surgeons (RACDS) was supportive of these changes in both countries and, as a result, the definitions of special needs dentistry in Australia and New Zealand are very much consistent with each other. The Royal Australasian College of Dental Surgeons describes the specialty as that which “supports the oral health care needs of people with an intellectual disability, medical, physical or psychiatric conditions that require special methods or techniques to prevent or treat oral health problems, or where such conditions necessitate special dental treatment plans” (16).

These definitions show significant consistency in the special needs subgroups identified when compared with previously used descriptions; that is, individuals with intellectual disabilities, medical conditions, physical impairments, and psychiatric conditions. However, in contrast to the western hemisphere experience, the evolution of a new term emerged: “special needs dentistry”, suggesting that it is not the care that changes in treatment provision to these patients, but that rather the treatment provided to the populations is dictated by their needs. Despite this, the definitions used continue to acknowledge the importance of specialist care due to the impacts of the patient’s conditions or to the way that treatment is provided.

In Europe, the United Kingdom (UK) is the only country to recognise special care dentistry as a registrable specialty (17). In recommending the establishment of the specialty in the UK, the Joint Advisory Committee for Special Care in Dentistry 30

suggested that a dental specialty was required to ensure the provision of appropriate oral health care to “individuals and groups in society who have physical, sensory, intellectual, mental, medical, emotional or social impairment or disability, or more often, a combination of a number of these factors” (18, 19).

The General Dental Council formalised the establishment of special care dentistry as a speciality in the UK in 2008 (20, 21). The definition used by the Royal College of Surgeons of England was adapted from that suggested by the Joint Advisory Committee: “Special Care Dentistry provides preventive and treatment oral care services for people who are unable to accept routine dental care because of some physical, intellectual, medical, emotional, sensory, mental or social impairment, or a combination of these factors” (20, 22). Here, in addition to recognising individuals with physical, intellectual, medical, psychiatric, and sensory impairments that have been identified previously internationally, the UK definition was expanded to recognise social circumstances, such as homelessness or refugee status, that may impact on access to or provision of oral health care. Furthermore, it recognised that each of these circumstances is unlikely to occur in isolation, but that interaction between them, with one condition potentially influencing or exacerbating another, may, in fact, further complicate their health care needs.

Recognition of this area of dental practice internationally has highlighted several central elements to this specialised area regardless of the variation in the definitions used across jurisdictions. Perhaps, to some degree, the evolution of this scope reflects a maturing of the specialty and desire to be inclusive, rather than exclusive, in prioritising the needs of these individuals and considering how their health care systems and workforces can best address them. Regardless of what path individual countries have chosen, there is international consensus for the need for the profession to focus on the improvement of the oral health of these vulnerable populations

through preventive approaches customised to the needs of the individual and guided by specialists or experts in the field.

1.2 “Special care dentistry” or “Special needs dentistry”?

Special needs dentistry has evolved from different origins and contexts internationally including paediatric dentistry, hospital dentistry, geriatric dentistry, dentistry for persons with disabilities, clinical community dentistry, dentistry for the disadvantaged, dentistry for the homeless, dentistry for the disabled, dentistry for the handicapped, dentistry for the psychiatrically disabled, and medically-necessary dentistry, just to name a few. All of these, however, have emerged from a growing recognition for the increasing unmet needs of these individual groups and an acknowledgement to achieve a better understanding and adapt and tailor dentistry to the individual needs of each patient, often taking into consideration medical conditions and other limitations or barriers to access and provision of care. These considerations are often compounded and require more than routine delivery of oral health care (1, 23).

The term “special care” is thought to have originated from references to “special health care needs” which have been used more widely in healthcare to represent additional considerations in provision of health care in the paediatric setting (e.g. special care nurseries) (24). In dentistry, the term “special care” is thought to have first been proposed in 1981 with the merging of several journals in the USA to form Special Care in Dentistry (1, 2) as mentioned above. This reflected the thought that many of these individuals required more than routine delivery of care; in essence, extra or ‘special’ care with regards to their dental treatment (1).

In contrast, it is believed that the term “special needs” originated as a euphemism for disability in the 1980s to reduce stigma associated with the term “handicapped” which

was declining in popularity (25). In dentistry, the use of this term is thought to have been coined by Glassman and Miller from an article published in 1998 describing a community-based dental program in California for individuals with additional needs (1, 26). The authors described the “special patients” in their study to include those with “medical, social, psychological, or physical conditions that make it necessary to modify the normal course of treatment”; a collective term used to be inclusive of those beyond disability and to reflect the additional or special considerations associated with their dental care (26). In particular, they provided specific examples including those with developmental disabilities, problems associated with medical conditions or ageing, and those with psychological conditions including dental phobias. The article highlighted the barriers to care that many individuals with “special needs” face and the way in which community programs can be developed to adapt to the needs of these patients (26).

As this area of dentistry has developed, the terms “special care dentistry” and “special needs dentistry” have both been used with subtle differences existing across different jurisdictions. Philosophical discussions have been had about whether these patients have needs that influence their oral conditions and treatment or whether the care provided changes based on individual patient presentation. However, regardless of the moniker or euphemism, the basic principles underlying each remain the same: to link the oral and general health of patients to compromised access to care and hence have become synonymous with each other (1, 27, 28).

1.3 Special Needs Dentistry in Australia

Amongst these international movements, special needs dentistry (SND) was formally recognised as a specialty in Australia in 2003 with specialists afforded the title of “specialist in special needs dentistry” (15). The Dental Board of Australia defined special needs dentistry as “the branch of dentistry that is concerned with the oral

health care of people with an intellectual disability, medical, physical or psychiatric conditions that require special methods or techniques to prevent or treat oral health problems or where such conditions necessitate special dental treatment plans” (15).

Similar definitions were accepted by other dental bodies in Australia. For example, the Royal Australasian College of Dental Surgeons (RACDS), an organisation instrumental in establishing the specialty, defined four main areas that constituted the scope of the speciality in Australia and New Zealand: intellectual disability, complex medical conditions, physical impairments, and psychiatric conditions (16). Likewise, the Australian Dental Association (ADA), the peak professional body representing the dental profession, accepted a description along similar lines: “oral health care of patients with an intellectual disability, or those with medical, physical or psychiatric conditions” although they particularly influenced the provision of “specially-tailored preventive and corrective dental treatment” (29, 30).

Unlike definitions used internationally, the Australian definition did not specifically provide any delineation based on age nor afford priority to those with social disadvantage. The difference in addressing the impact of social situation in the Australian and British definitions is likely to be partially reflective of difference in the country’s health care systems. In the British system, where oral health care is provided as part of a universal health care model, equitable access is a basic principle, particularly on the grounds of socioeconomic status. Unfortunately, as a result, there are fewer programs targeted at populations in need, thus potentially neglecting populations that may experience other unforeseen barriers to accessing care. In contrast, the public dental care system in Australia is largely designed to provide oral health care to individuals based on financial disadvantage. Furthermore, targeted programs exist to assist priority groups, such as those that are deemed socially- disadvantaged, in an attempt to overcome barriers that may exist. Further discussion

on models of health care and the influence on treatment provision will be provided later in this review.

Secondly, although paediatric populations are not distinctly separated from that of special needs adults in Australian definitions, the unique relationship between paediatric dentists and specialists in special needs dentistry is generally implied. Historically, prior to recognition of special needs dentistry, the role of paediatric dental specialists was seen as the provision of dental care for “children from birth through to adolescence and those with special needs” (15). Many of these definitions have remained unchanged recognising the role both specialities have in the dental care of these populations and the continuity of the care that is required (15, 30, 31).

Similarly, in comparison to the Brazilian definition, ageing is not in itself identified as an indicator of “special needs”. This is not to say that older adults are ignored. Just as all children do not necessarily require treatment to be provided by a paediatric dental specialist, likewise not all older adults in the community require specialist care. In the Australian setting, what differentiates individuals that seek treatment from specialists in special needs dentistry from others in the population is that their conditions, whether they be impairments of a medical, physical, intellectual, or psychiatric nature, in some way affect their oral health or the way that dental treatment may need to be provided.

2. What constitutes special needs dentistry? Defining the patient with special needs:

2.1 Concepts, definitions, and prevalence of disability

The World Health Organization released the International Classification of Functioning, Disability and Health (ICF) in 2001 with the aim of developing a unified and standardised language for the description of health and health-related states (32). The publication of this document represented a significant step forward from the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (33). In particular, terms with negative connotations, such as impairment, disability, and handicap, were largely replaced with a conceptual framework that promoted the idea that abilities represent a spectrum of function. Thus, what may be described as an impairment was, in fact, a variable point that lay on this spectrum. Similarly, it recognised that these variations in function can be impeded or assisted by environmental elements thereby promoting the importance of considering how individuals adapt in their environments. As a result, the ICF has moved away from being a classification of “consequences of disease” to promoting the concept of “components of health” (32).

In the ICF, “functioning” is used as an umbrella term encompassing all body functions, activities, and participation whereas “disability” refers to impairments, activity limitations, or participation restrictions (32). As a result, components of health are thus considered as domains of the body, individual, and society, and how these interact with one another (32).

Unlike other classifications, the ICF document was designed for several purposes including as:

• A statistical tool: for collecting and recording data; 36

• A research tool: to measure outcomes, quality of life, and environmental factors; • A clinical tool: to assist with needs assessment, matching treatments with specific conditions; vocational assessment, rehabilitation, and outcome evaluation; • A social policy tool: in social security planning, compensation systems, and policy design and implementation; and, • An education tool: as part of curriculum design and to raise awareness and undertake social action (32).

Despite the many benefits of using the terminology described by the International Classification of Functioning, Disability and Health (ICF), society has long used medical models to consider aspects of health. This is naturally reflected in many definitions of disability.

In Australia, the Disability Discrimination Act 1992 defined “disability”, as it pertains to a person, to mean:

• Total or partial loss of bodily or mental functions; or • Total or partial loss of a part of the body; or • Presence in the body of organisms causing or capable of causing disease or illness; or • Malfunction, malformation, or disfigurement of a part of the body; or • A disorder or malfunction that results in learning that is different from a person without the disorder or malfunction; or • A disorder, illness, or disease that affects thought processes, perception of reality, emotions or judgements or that result in disturbed behaviour (34).

The term “disability”, as imputed to a person, may include any of these states that currently exist, previously existed but no longer exist, or may exist in the future

because of a predisposition but also includes behaviours that occur as a symptom or manifestation of the disability (34).

The World Report on Disability, using the definition specified by the International Classification of Functioning, Disability and Health, reported that the prevalence of disability is increasing due to the increased lifespan of those with disabilities, the ageing population, and the increasing impact of chronic disease and mental illness (35). It reports that approximately 15% of the world’s population, or more than one billion people, currently live with some form of disability (35). Similar figures have been reported by other multi-national surveys. The Global Burden of Disease study estimated that 19.4% of the world’s population, or 978 million people, and 5.1% of children (95 million) had some form of disability (36). The World Health Survey reported slightly lower figures with 785 million persons over the age of 15 having a form of disability (37). Females, individuals from low to middle-income socioeconomic backgrounds, and those more advanced in age and a history of multiple health problems were more likely to have greater levels of disability (36). Rates of disabilities were also reported to be higher in lower income countries (18.0% vs 11.8%) (37). Rates of “severe” disability ranged from 2.2-3.8% (36, 37).

In Australia, the Survey of Disability, Ageing and Carers (SDAC) defined disability as “any limitation, restriction or impairment which restricts everyday activities and has lasted, or is likely to last, for at least six months (38). In 2018, it reported that 4.4 million Australians, 17.7% of the population, had some form of disability (38). Reported levels of disability are shown in Table 1. International figures from The World Health Organization’s Multi-Country Survey Study on Health and Responsiveness 2000- 01 (MCSS) reported that 35.1% of Australians have difficulties with moving around, 10.1% have difficulties with self-care, and 27.4% have difficulties with household activities (39). Despite these figures, only 4.3% of Australians lived in cared accommodation with the vast majority living in households (38). 38

Table 1: Levels of disability and prevalence in the Australian population (38)

Level of disability Definition Prevalence (%) Profound limitation Always need help with at least one core activity 3.2 Severe limitation Need help sometimes or have difficulty with a core 2.6 activity Moderate limitation No need for help but have difficulty 2.4 Mild limitation No need for help and no difficulty but use aids or have 6.1 limitations Schooling and History of difficulties related to education and 1.4 employment only employment only

Like international figures, the prevalence of disability in Australia increased with age with almost half of all older Australians (49.6%) needing assistance with everyday activities (38). However, unlike other sources, similar rates of prevalence were found for males (17.6%) and females (17.8%) (38). For those with disabilities, the main source of income was a government pension or allowance (37.9%) with labour force participation estimated at 53.4% (38)

The main forms of disability were reported to be physical disorders that affected 76.8% of those with disabilities (38). These were most commonly related to musculoskeletal issues (29.6%) such as arthritis and back problems (38). Some 23.2% had mental or behavioural disorders with the most commonly reported groups being psychoses and mood disorders (7.5%), intellectual and developmental disorders (6.5%), and neurotic, stress-related, and somatoform disorder (6.1%) (38).

Geographically, Tasmania had the highest prevalence of disability with 26.8% reporting a form of impairment as shown in Table 2 (38). This variability in prevalence has been partly attributed to the age structures of the populations across states and territories (38). The prevalence of disability was highest in inner regional Australia (22%) compared with major cities (17%) and outer regional and remote areas (20%) (40).

Table 2. Prevalence of disability by state or territory (38)

State/Territory Prevalence (n) Prevalence (%) New South Wales 1,346,200 16.9 Victoria 1,098,200 17.0 Queensland 938,100 19.1 South Australia 332,500 19.4 Western Australia 411,500 16.4 Tasmania 140,100 26.8 Northern Territory 20,700 11.6 Australian Capital Territory 80,000 19.4 TOTAL 4,367,200 17.7

Definitions of disability vary in Australia and internationally, and reflect differences in how these limitations may be conceptualised, whether that is at the level of the individual or how they interact in society, as well as how this may change over time. This can also be seen in varying statistics describing the prevalence of such limitations. Likewise, whether these limitations in function mean that individuals require specialised dental care is a further consideration. Given that disabilities have traditionally been delineated into areas such as intellectual disability, physical disability, and mental disability (or mental health), and that much of the literature uses this framework, these areas will be explored further in this manner within the following sections.

2.2 Intellectual disability

The World Health Organization defines intellectual disability as “a significantly reduced ability to understand new or complex information and to learn and apply new skills” and thus cope independently (41). These impairments commence prior to adulthood and continue to have lasting effects on development. In this definition, intellectual disability is accepted to be the result of various health conditions and impairments, but also may be influenced by a variety of environmental factors that support or impede an individual’s participation and inclusion in society (41). Other commonly used terms

for intellectual disability include mental retardation, mental handicap or disability, learning and development disabilities, and mental deficiency or sub-normality (42, 43).

Unlike the World Health Organization, the American Association of Mental Retardation (AAMR) sought to define intellectual disability according to current ability to function based on the presence of any significant limitations (44). In their definition, intellectual disability is classified based on significantly sub-average intellectual functioning in the presence of limitations in two or more adaptive skill areas that manifest before the age of 18. These may include communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work (44).

Although the definitions appear significantly different, they provide very similar descriptions of intellectual disability. Both acknowledge limitations in understanding and learning that manifest initially during childhood and adolescence. Likewise, although the AAMR is more specific in terms of criteria for classification, both essentially acknowledge how these impairments affect an individual’s ability to function independently (44). In contrast to the WHO definition, that of the AAMR is more specific about the influence of limitations in intellect and the adaptive skills of the individual (41, 44). Likewise, the WHO more clearly discusses the role that environmental factors may play on impacting an individual’s ability to adapt and function in society; a reflection of the biopsychosocial model of health (41).

The specificity of the definition developed by the American Association of Mental Retardation has been highly influential in the development of other descriptions of intellectual disability and clinical diagnostic standards (45). Most notable of these is its impact on clinical practice with the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (45). In addition, 41

many Australian organisations have chosen to use adapted versions of these definitions. The Australian Disability Clearinghouse on Education and Training (ADCET) recognises intellectual disability to be the result of a group of conditions caused by various genetic disorders and infections (46). These are usually identified during childhood but have an ongoing impact on an individual’s development resulting in a reduced ability to process, learn, and comprehend new information, and thus function in day-to-day society. Like the WHO definition, ADCET also acknowledges the influence social support may have on the ability of individuals to function independently. As a result, their definition recognises that intellectual disability may vary in severity and may be graded as mild, moderate, severe, and profound (46).

Recognising these variations has influenced the development of broader definitions of intellectual disability. The Intellectual Disability Rights Service (IDRS) describes intellectual disability as “a disability that affects the way that you learn” that may be congenital or acquired before the age of 18 (47). It continues to describe that individuals affected may present well (“cloak of competence”) but, in fact, experience significant difficulties in adapting to new or unfamiliar situations, communication, understanding, including abstract thinking, problem solving, and maintaining eye contact (47).

In contrast to many other organisations, the Intellectual Disability Rights Service (IDRS) also provides a clinical definition, consistent with criteria recognised internationally and outlined in the International Classification of Functioning, Disability and Health (ICF) and the Diagnostic Statistic Manual for Mental Disorders (DSM) (32, 45, 47). According to IDRS, clinical diagnosis of intellectual disability requires an IQ of 70 or under, and deficits in at least two areas of adaptive behaviour, that may include communication, self-care, home living, social skills, self-direction, leisure and work, and learning (47, 48). Using these clinical criteria, psychologists may classify the severity of intellectual disability based on IQ (47). Borderline intellectual disability is 42

defined as having an IQ score of 70 to 75, mild with a score of 55 to 70, moderate scored 30 to 55, and severe intellectual disability with a score of under 30 (25). Unfortunately, classifications of intellectual disability based purely on IQ fail to recognise the second part of most definitions: adaptive behaviours. Attempts have been made to correlate these abilities to IQ scores (Table 3). Many groups, however, have highlighted that using such IQ ranges to classify abilities and impairments of an individual is arbitrary and fails to accurately assess not only the adaptive behaviour that forms a crucial part of how intellectual disabilities manifest, but also the cultural background of individuals in our ever-changing world (32, 47).

Table 3. Characteristics of individuals with intellectual disability based on diagnosed level of disability and IQ (47)

Level of disability IQ Description Mild 50-70 Can integrate and interact with family and community May travel and live independently Require support with money, plans and organising daily life May learn to read and write at basic level May have important relationships in their life, may marry and have children May be awkward and inappropriate in social situations Difficulty understanding subtleties of interpersonal relations and social rules Moderate 35-50 Have important relationships and enjoy range of activities with family and friends Able to learn to travel on public transport with specific guidance but are unable to problem solve e.g. if bus does not turn up May recognise words but will have difficulty planning trips and handling money Can develop independence in personal care and hygiene but rely on daily schedules and visual prompts to remember routine Severe 20-35 Usually recognise familiar people and have strong relationships (Profound IQ <20) with key people in their life Have little or no speech, rely on non-verbal communication

As a result of these deficiencies, many advocacy groups recommend the use of a sociological definition of intellectual disability where it is viewed in terms of the support needed by individuals (32). This concept, which is highly reflective of the ICF

definition, advocates that intellectual disability should not be defined as an unchangeable characteristic of the individual. Rather, the “effect of the disability or capability of the person is a function not only of the disability but also a function of their environment and the support they receive” (48).

The definition used by Achieve Australia, a major disability services provider, is supportive of the belief described above. Although this organisation recognises the use of the internationally-recognised criteria in the clinical diagnosis of individuals with intellectual disability, and that it may provide some indication of the level of support required by these individuals, it strongly suggests that categorising individuals is arbitrary and fails to acknowledge how an individual is able to adapt in social situations (49). Consequently, Achieve Australia describes individuals with intellectual disabilities as having difficulties in understanding the subtleties of interpersonal interaction resulting in learning and processing of information that may be slower than people without intellectual disabilities (49). Communication, managing daily living skills, and comprehending abstract concepts, such as time and money, may be significantly compromised (49). Like many of the previously discussed organisations, Achieve Australia recognises that these impairments may be the result of medical problems including problems during pregnancy and birth, health problems or illness, a genetic condition or environmental factors, brain injury or infection, exposure to toxins, substance dependence during pregnancy, or growth and nutritional problems (49).

Worldwide prevalence of intellectual disabilities has not been fully evaluated. A meta- analysis of the published literature between 1980 and 2009 estimated the prevalence of intellectual disability to be slightly over 1% of the population (50). Wide variations in estimates and prevalence exist due to differences in definitions, measurements, survey approaches, data sources, and geographic locations (Table 4) (43).

Table 4. Reported prevalence of intellectual disability with available information on data sources/methods and the definitions used (43)

Estimates of Regions Data sources and methods Definitions prevalence (%) 0.3-0.4 World Agency records Adapted AAMR, ICD-9 0.4-0.5 Australian Agency records Adapted AAMR states 0.42 Australia 1989-90 ABS National Health Adapted ICD-9 Survey (excluded people in institutions) 0.65 Australia 1993 ABS Disability survey Adapted ICIDH/ICD-9, using AIHW groupings 0.73 Australia 1993 ABS Disability survey Adapted ICIDH/ICD-9, using AIHW groupings 1.0-1.5 World Epidemiological studies AAMR/ICD 1.7 Australia 1993 ABS Disability Survey All people responding positively to question of “slow at learning or understanding” 1.86 Australia 1993 disability survey Adapted ICIDH/ICD-9, AIHW groupings 3.0 United States of US President’s Task Force and Theoretical prevalence America President’s Panel on Mental is extrapolated from Retardation statistical models based on IQ scores AAMR: American Association of Mental Retardation, ABS: Australian Bureau of Statistics, AIHW: Australian Institute of Health and Welfare, ICD: International Classification of Disease, ICIDH: International Classification of Impairments, Disabilities and Handicaps

According to Australian Bureau of Statistics (ABS) data, in 2012, 2.9% of the population (668,100 Australians) were estimated to be living with an intellectual disability (51). This indicated a significantly higher proportion of the population than quoted a decade earlier by Wen (43) and a statistically significant increase from figures published by the ABS in 2009 (51). It was reported to be more common in the very young and very old with males more likely to be affected across the population (51).

The most common causes of intellectual disability were head injury (32,600), stroke or cerebrovascular accident (35,900), or other forms of brain damage (31,100) (51). Of

the 88,200 individuals who identified a developmental or intellectual disorder as the primary cause, 86,500 were diagnosed with dementia and 84,800 diagnosed with autism or other disorders on the autism spectrum, including Rett’s syndrome and Asperger’s syndrome (mild autism) (51). Of the overall cohort, 567,000 required assistance with at least one daily activity with the majority (344,100) receiving assistance from informal carers, including family members (51). This was also reflected in that the majority (82%) were living in households, rather than residential facilities. Sixty-four percent (429,700) were living in the family household (51).

The Intellectual Disability Rights Services used IQ diagnostic criteria to estimate the severity of intellectual disability in the Australian population (47). The majority (75%) of individuals with an intellectual disability were estimated to have an IQ of 56-75 placing them in the mild category. Of those remaining, 20% were estimated to have a moderate level of disability (IQ 30-55), with the remaining 5% placed in the severe category (IQ<30) (47).

Like the broader term of “disability”, the subgroup of intellectual disability represents a group of individuals with a spectrum of impairments and abilities. Regardless of differences in concepts that define intellectual disability, it is apparent that such limitations in understanding and skill may necessitate additional support with daily activities, but also in terms of provision of health care, recognising the varying needs of these individuals and other possible complicating factors such as the impact of comorbidity of medical conditions and other impairments. As a result, although having an intellectual disability does not necessarily preclude these individuals from receiving regular dental care, the universal inclusion of this group in definitions of special needs dentistry recognises the additional needs discussed in wider concepts of intellectual disability.

2.3 Physical disability

Unlike intellectual disability, international definitions of physical disability are sparse following the publication of the International Classification of Functioning, Disability and Health (ICF) (32). The classification has redefined the way in which health professions view impairment and disability. ICF has provided significant guidance in standardising the definition of disability in general, but also more specifically, physical disability (32).

The United Nations’ Development of Statistics of Disabled Persons: Case Reports represented the initial steps towards changing concepts of disability (52). Published in 1986, it described physical impairments to “include visceral, skeletal and disfiguring impairments – for example, amputations, paralysis, limping and lameness, deformity, and hunched back” (52). A more detailed definition was used by the United Nations in 1988 where a key feature was the demarcation between concepts of impairment and disability (53). The former encompassed both sensory (aural, language, and ocular) and other types of physical impairments (visceral, skeletal, and disfiguring) (52). The latter was somewhat more complex including disabilities based on locomotion (ambulation and confining disabilities), manual dexterity (use of doors, domestic appliances, and windows, and manual activity disabilities, such as fingering, gripping and holding), and communication (speaking, listening, seeing, and other disabilities) as well as issues pertaining to day-to-day life (e.g. personal care: toileting, hygiene, feeding, and dressing) and body disposition (including domestic disabilities, such as preparing and service of food, and care of dependants, and body movement disabilities) (53).

While these definitions present a medical model of disability, the International Classification of Functioning and Disability (ICF) has encouraged a shift towards the use of a biopsychosocial model. The University of Western Sydney and National Disability

Coordination Officer Program (NDCOP) embraced the changes instituted by ICF defining a physical disability as “a limitation on a person’s functioning, mobility, dexterity and stamina” (54). In this definition there has been a complete move away from physical impairments to instead defining limitations in function. In addition, it continues to state that these disabilities may be temporary, short-term, or long-term with some conditions going into remission and others showing a gradual deterioration. Likewise, others may come and go with no particular pattern. In this manner, changes in functioning over time are acknowledged, reflective of Australian legal definitions of disability. Furthermore, these physical disabilities may be congenital or acquired later in life through an accident, injury, illness, or as a side effect of medical treatment. Examples of physical disability provided included cerebral palsy, spinal cord injury, amputation, multiple sclerosis, spina bifida, musculoskeletal injuries such as back injuries, arthritis, and muscular dystrophy (54).

A similar definition is supported by the Physical Disability Council of NSW (PDCN) describing physical disability as a “total or partial loss of a person’s bodily functions and total or partial loss of a part of the body”; combining both medical and functional descriptions used previously (55). These may be congenital or acquired later in life, singular or multiple, apparent or hidden, and can result in a range of differing abilities and impacts (55).

The significant move away from defining these disabilities by physical attributes to concepts of impaired function has had an influence on the way studies of disabilities are conducted. In particular, this is reflected in the definitions used by organisations responsible for population health statistics. The Australian Institute of Health and Welfare defines physical disability as one associated with a physical impairment or identified by physical activity limitations in performing simple activities that are associated with physical abilities (56). The ABS uses a similar functional concept, no longer defining disability based on condition, but on how conditions may restrict daily 48

living (57). According to the ABS, an impairment may be physical, sensory, psychological, or intellectual but must involve damage to, or poor functioning in, any part of the body or mind because of genetic or birth circumstances, disease, or injury (57). Thereby, a disability is a restriction or limitation in the ability to perform usual everyday activities that is caused by an impairment for a period of at least 6 months. It may also be described by levels of severity (57).

In addition to these definitions, disability may be measured based on functional assessment of capacity to perform a variety of activities, once again, very much reflective of ICF principles. Two basic measures of activity limitation are the Activities of Daily Living (ADL) scale and the Instrumental Activities of Daily Living (IADL) scale (56). The former focuses on assessing an individual’s ability to perform basic self-care activities such as bathing, dressing or toileting (49). In contrast, the IADL scale assesses activities relevant to independent functioning in the community, and may include light housework, meal preparation, grocery shopping, travel, and money management (3).

International data on the prevalence of physical disabilities has been limited. In Australia, however, the ABS reports that 76.8% of those with disabilities have a physical impairment (38). The most common conditions likely to result in physical disabilities were musculoskeletal issues such as arthritis and related disorders (12.7%) and back problems (12.6%), which were more likely to have moderate or mild limitation (38). Approximately 17.1% of Australians require the use of aids for mobility (38). The most commonly used mobility aids were walking sticks (6.7%) and walking frames (6.6%) (40).

The term “physical disability” represents a relatively broad concept that has evolved to appreciate how limitations or impairments may impact on the manner in which individuals interact with the world around them. These perspectives are also likely to 49

be reflected when considered in the realm of special needs dentistry. Given the wide range of abilities, and the aids that are available in many circumstances, whether individuals require specialist dental care is likely to be dependent on how individuals are able to interact with the health care system and whether these impact on their oral health or access or receipt of treatment.

2.4 Sensory impairments

When one of the senses, such as sight, hearing, touch, taste, smell, and/or spatial awareness, are no longer functioning at normal capacity, an individual may be deemed to have a sensory impairment (58). However, the two most common impairments of blindness and deafness are often synonymous with this term (58). In many population-based studies, sensory impairments are often grouped together and included within definitions of physical disability or chronic impairment (36, 59, 60).

2.4.1 Visual impairment

Visual impairment was defined by the World Health Organization as the “decrease or severe reduction in vision that cannot be corrected with standard glasses or contact lenses and reduces an individual’s ability to function at specific or all tasks” (58). Key to this definition is the fact that the reduction in vision cannot be corrected with vision aids and reduces the individual’s ability to function. In contrast, blindness is defined as the “profound inability to distinguish light from dark, or the total inability to see” (58).

In contrast, vision impairment has been classified into two groups with the International Classification of Diseases 11: distance vision impairment and near vision impairment (61). Distance vision impairment was further categorised into mild (visual acuity worse than 6/12), moderate (visual acuity worse than 6/18, severe (visual acuity

worse than 6/60), blindness (visual acuity worse than 3/60) (61). Near vision impairment was defined as “presenting near visual acuity worse than N6 or M.08 with existing correction” (61).

In Australia, Vision 2020 Australia and the Centre for Eye Research Australia use similar parameters to define measurable visual acuity (62). As a result, vision impairment was determined as “presenting distance visual acuity of less than 6/12 in the better eye”, the same level as mild distance vision impairment in ICD-11, with blindness defined as “distance visual acuity at less than 6/60 in the better eye”; the equivalent of severe distance vision impairment in ICD-11 (61, 62).

Globally, the World Health Organization estimates that approximately one billion people have some form of vision impairment (63). The most common causes of vision impairment are unaddressed refractory error, cataracts, glaucoma, corneal opacities, diabetic retinopathy, and trachoma (63). A systematic review and meta-analysis of population-based datasets published in 2017 estimated that 36 million people, or 0.48% of the world’s population were blind (64). A further 216.6 million people (2.95%) are estimated to have moderate to severe visual impairment and another 188.5 million (2.57%) with mild visual impairment (64).

In Australia, The National Eye Health Survey 2016 reported that more than 453,000 Australians live with blindness or vision impairment (62). The prevalence of both conditions increased with age and were three times higher in indigenous populations (62). Like international figures, refractory error and cataracts were the most common causes of vision impairment across all groups (62). It is estimated that approximately half of Australian population wears glasses or contact lenses (65).

2.4.2 Hearing impairment

In contrast to definitions for vision impairments, the World Health Organization defined with hearing thresholds of greater that 25dB in both ears as having hearing impairment (66). Hearing loss may be graded by hearing level in decibels as slight/mild (26-40dB), moderate (41-60dB), severe (61-80dB), and profound (over 81dB) (61). Disabling hearing loss refers to those with hearing loss greater than 40dB in the better hearing ear in adults and greater than 30dB in children (66).

The World Health Organization estimates that more than five percent of the world’s population, or 432 million adults and 34 children, have disabling hearing loss (66). The Australian Institute of Health and Welfare reported that in 2014-15 more than three million Australians, or 14% of the population, had at least one long-term hearing disorder (65). The most common hearing disorder, affecting 10% of Australians, was complete or partial hearing deafness (65). During the same period, more than 364,000 hearing devices were issued in Australia with approximately 15% of the total population wearing a hearing aid (65).

With widespread awareness of vision and hearing impairment in Australia and globally, and greater efforts to reduce barriers to individuals with these impairments within the community, there have been greater opportunities to reduce the impact on activities of daily living for those with these impairments. As a result, definitions of special needs dentistry and special care dentistry have differed across the world in this area, partly in recognition that although vision or hearing impairment may impact on the manner in which individuals receive dental care, it does not necessarily mean they require specialist level care.

2.5 “Medically-compromised” patients

Patients that require dental treatment may have various medical conditions or be taking medications that can affect their dental management. As a result, they are an important and diverse group of patients often treated by all oral health professionals. However, medical conditions can present with a range of severity, and it is those who have more advanced or severe manifestations of their disease, or interactions between multiple chronic diseases, that are often treated by specialists in special needs dentistry. General dental practitioners should consider the appropriateness of providing treatment to this subgroup in the general practice setting given the often complex interaction between their health conditions, oral health, and dental treatment. For these “medically-compromised” patients, modifications may be necessary to facilitate the safe provision of dental care (67).

For the medically-compromised patient, Seymour (2003) categorised the potential areas of concern as follows:

• The effect of medical problems and drug therapy on the delivery of dental treatment, • Oral and dental problems that can arise from either the medical condition or medication, or • Possible interaction between the patient’s oral and general health (68).

These concerns for the dental profession are not new and should be widely appreciated. The taking of a thorough medical history should form a crucial part of the patient assessment. Likewise, dental training should provide practitioners with the skills and knowledge to make these assessments. The question that arises, however, is how can the impact of these medical conditions and medications be quantified and at what level of compromise should a patient be referred for specialist management?

2.5.1 Medical histories

In 1977, Eggleston published the results of a study of medical history responses from patients attending the Perth Dental Hospital in Australia (69). A standardised medical questionnaire was administered to 1125 consecutive patients by the Casualty Dental Officer when they presented to the hospital. The questionnaire included questions about whether the patient was under medical care at the present time, if they suffered from heart or chest trouble, a bleeding disorder, or ever had rheumatic fever, if they were allergic to penicillin or any other drug, if they were currently taking any tablets, pills, medicines or drugs, and if they had ever had a serious illness or had been to hospital (69).

Although this medical history was rudimentary in comparison to current clinical standards, 35.4% of patients were found to report a positive response to at least one or more of the questions (69). Commonly reported conditions included recent infection (9.94%), cardiovascular disease (9.94%), central nervous system conditions (8.3%), respiratory conditions (5.2%), and arthritis (4.5%). Hypertension, angina and mitral stenosis, and asthma and bronchitis were the most common cardiovascular and respiratory problems reported. Negative answers were provided by 599 participants. These included hospitalisation for childbirth, tonsillectomy, or appendicectomy. Despite the discrepancy between current standards in terms of the comprehensiveness of the medical history, the author advocated the use of standardised medical questionnaires in increasing the accuracy of patient reporting of medical conditions (69). The taking of a thorough and accurate medical history is not new and considered a minimum standard for dental records and should be routine practice in clinical dental settings both nationally and internationally (70).

Despite this, the question that often arises concerns the accuracy and different standards of medical histories conducted. A more recent review of referrals to the Oral and Maxillofacial Unit at the Royal Hobart Hospital examined this (71). Over a period of 6 months, the study reported that referrals were largely from dental practitioners working in the public dental system (44.4%), medical general practitioners (33.3%), and medical specialists (16.7%) with the remainder from private dentists (3.7%) and dental specialists (1.9%). Medical histories were conducted using a standard self-administered patient questionnaire and confirmed through an interview conducted by the examiner. These were then compared to those provided by the referring practitioner (71).

DeAngelis et al., reported that 58.8% of referrals had a complete medical history with an average of 1.31 relevant items missing (71). The completeness of medical histories provided by medical practitioners (62.4%) was somewhat higher than those from dental practitioners (55.2%). Only 29.6% of the medical histories provided with referrals were complete with a higher proportion of dentists in this category. The items reported with greatest accuracy included bleeding tendencies, bisphosphonate use, and diabetes. The study found that osteoporosis, adverse drug reactions, cardiovascular disease, and susceptibility to endocarditis were also reported reasonably well. In contrast, a history of infectious disease status, stroke, blackouts, and epilepsy, as well as details of previous head and neck tumours or radiotherapy were less frequently reported (71). These results were comparable to a previous study conducted at the same facility 23 years earlier (72). Although reporting of certain conditions improved over the two decades, potentially the result of increased awareness of health professionals, it was suggested that advances in technology and education failed to improve overall reporting of medical conditions and medications in referrals (71). The results reinforce the importance of the medical history taken by oral health professionals and the need for an appropriate level of understanding to recognise not only the possible implications of certain medical conditions and

medications on dental treatment, but also where there may be omissions in the details provided.

2.5.2 Multiple medical co-morbidities

Knowledge of the nature of interactions between the oral cavity and the rest of the body continue to develop and is central to the provision of care for patient with special needs. An understanding of these interactions is also important to promoting the importance of interprofessional relationships between medical and oral health professionals in managing patients. However, the question remains of how to quantify medical conditions as those requiring specialised dental treatment.

The definition of special needs dentistry in Australia states that the specialty supports the treatment of patients with “medical ... conditions that require special methods or techniques to prevent or treat oral health problems, or where such conditions necessitate special dental treatment plans” (16).

Similar questions regarding complexity of patient presentation in the medical field of anaesthesiology resulted in the publication of the American Society of Anethesiologists Physical Classification System (ASA PS) in 1941 (73). The aim of this classification was to devise a system by which a patient’s outcome and anaesthetic risk could be stratified by assessment of their illness severity prior to surgery. The classification was designed as a statistical tool rather than for use to prognosticate the effect of surgical procedure based on the physical status classification. Hence, although the tool may assist in providing a guide to assessing anaesthetic risk based on a patient’s medical presentation, its use has not been validated as a clinical tool to predict risk of anaesthetic complications or patient outcomes for anaesthetic procedures (73).

Modifications to the ASA PS classification have occurred since its original publication and the current system is more reflective of that adopted by the organisation in 1962 (74). The most recent classification was approved in October 2014, with an update completed in December 2020, and is shown in Table 5 (75).

Table 5. The American Society of Anesthesiologists Physical Status (ASA PS) Classification System (Dec 2020) (75)

ASA PS Definition Examples ASA I A normal healthy patient Healthy, non-smoking, no or minimal alcohol use ASA II A patient with mild Mild diseases only without substantive functional limitations systemic disease e.g. current smoker, social alcohol drinker, pregnancy, obesity (BMI 31-39), well-controlled Diabetes mellitus or hypertension, mild lung disease ASA III A patient with severe Substantive functional limitations; one or more moderate to systemic disease severe diseases e.g. poorly controlled Diabetes mellitus or hypertension, COPD, morbid obesity (BMI >40), active hepatitis, alcohol dependence or abuse, pacemaker, premature infant PCA<60 weeks, history (>3 months) of MI, CVA or TIA ASA IV A patient with severe Recent (<3 months) MI, CVA, TIA, or CAD/stents, ongoing systemic disease that is a cardiac ischemia or severe valve dysfunction, severe constant threat to life reduction in ejection fraction, shock, sepsis, DIC, ARD, or ESRD not undergoing regularly scheduled dialysis ASA V A moribund patient who Ruptured abdominal/thoracic aneurysm, massive trauma, is not expected to survive intracranial bleed with mass effect, ischemic bowel in the without the operative face of significant cardiac pathology or multiple organ/system dysfunction ASA VI A declared brain-dead patient whose organs are being removed for donor purposes ARD: Acute respiratory distress, BMI: Body mass index, CAD: Coronary artery disease, COPD: Chronic obstructive pulmonary disease, CVA: Cerebrovascular accident, DIC: Disseminated intravascular coagulation, ESRD: End stage renal disease, MI: Myocardial infarction, PCA: Post-conceptual age, TIA: Transient ischaemic attack

Reviews of the modified ASA PS suggest that it can quantify some degree of the amount of physiological reserve that patients possess at the time they are assessed for a surgical procedure, but it should not be used as a sole predictor of operative risk (76,

77). The most significant criticism of the use of this classification system is that it is purely based on systemic disease identified by the patient’s past medical history, current medications, and the amount of limitation that the disease causes to everyday life (76, 77). In the field of surgical anaesthesiology, other factors that often need to be considered include airway difficulty, problems with previous anaesthetics, genetic problems, malignant hyperpyrexia, suxamethonium apnoea, and religious beliefs (76).

Treatment under general anaesthesia plays a significant role in the treatment of patients with special needs, as do different forms of sedation. Factors for assessing risk of anaesthetic complications are thus important considerations for anaesthetists and dental practitioners involved in inpatient treatment of this nature. Australian health regulatory bodies have published several guidelines on these practices (78, 79). In particular, the Australian and New Zealand College of Anaesthetists (ANZCA) has published Guidelines on Sedation and/or Analgesia for Diagnostic and Interventional Medicine, Dental or Surgical Procedures (78). These standards provide definitions for sedation, analgesia, and anaesthesia and set out regulations on the management of patients, staffing, and equipment when these modalities are employed (78).

Despite its shortcomings, the use of the ASA PS may be considered to have potential for assessing patients to be treated by specialists in special needs dentistry units or in general dental practice. Although there has been significant criticism of its use as a clinical tool in anaesthesiology, many of its deficiencies are associated with assessing for the anaesthetic procedure itself, such as airway difficulties and medication- associated problems. While these points are valid, they are not relevant to patients being treated in the dental surgery under local anaesthesia. In the setting of the dental surgery, an assessment tool that assesses the number and severity of medical co-morbidities could potentially provide a structured framework for dentists to use in assessing how a patient’s medical history may influence the suitability of treatment in

different dental settings. This has been a significant area of confusion in assessing case complexity in the past.

A group at the Department of General Pathology and Internal Medicine at the Academic Centre for Dentistry Amsterdam (ACTA) proposed the use of a modified version of the patient classification system used by the American Society of Anesthesiologists to detect medically-compromised patients by using their medical histories (80, 81). The ASA criteria were adapted to form the basis of a risk-related patient-administered questionnaire consisting of six questions. The questionnaires were administered by 47 trained dentists to participating adults. In some cases, it was necessary for the dentist to consult with the patient’s medical physician about incomplete information or the possible implications of medical problems for dental treatment. Participating dental practitioners were asked to assign each patient an ASA category based on their findings. The same medical information was later transferred to a computer by researchers to develop a computer-generated modified ASA score. The aim of the study was to measure the agreement between modified ASA scores assigned by the dentist and that calculated by the computer. Analysing the results from the 2806 participants, moderate agreement (kappa value 0.64, McNemar score 219.7) was found between dentist and computer-assigned scores (80). In general, dentists’ scores were lower than those assigned by the computer (80). Using the developed risk classification, 63.3% of patients were determined to be healthy with the remaining 36.7% having an increased medical risk associated with dental treatment (80).

The authors suggested that both methods of assessment had drawbacks (80). The computer relied on data only with no patient or additional information whereas dentists were potentially confused by the healthy appearance of the patient and thus underestimated the severity of symptoms (80). Likewise, dentists may have had difficulties in applying the classification system appropriately to patient presentations 59

(80). However, they did continue to advocate the importance of a standardised medical questionnaire in determining the medical status of patients receiving dental treatment (80).

Others have also explored aspects of a standardised medical history questionnaire. For example, a group in the Netherlands developed a Medical-Related Risk History (MRRH) questionnaire on the basis of previous validation studies (81). The questionnaire was completed by participating adult patients (18 years and older) and verified by 50 trained dental practitioners. The medical histories assigned patients a “potential risk score” for dental treatment based on the information provided, thus giving dentists a directive for treatment or adjustments for treatment that may be required. Four ASA risk-score categories were deemed of interest to dental practitioners with patients assigned based on responses to the medical questionnaires (Table 6) (81).

Table 6. Results by ASA PC risk score categories with descriptions of each categories and the possible implications for dental treatment (81)

ASA Systemic disease Dental treatment % (N=29,424) I No medical problems reported No interference with dental treatment 78 II Mild-moderate systemic Routine dental treatment with stress 12.7 disease that does not limit daily reduction and preventive measures activities III Moderate systemic disease that Careful modification of dental treatment 5.7 limits daily disease but is not accompanied by stress reduction and incapacitating medical consultation IV Severe systemic disease that Only emergency treatment should be 3.5 limits daily activity and is a provided constant threat to life Medical consultation and hospitalisation for stressful elective treatment are essential

The MRRH was designed so that an affirmative answer on the questionnaire always resulted with the patient being classified as an ASA II category (81). Subsequent questions discriminated between the ASA classes III and IV. Most patients (78.0%) did 60

not report any medical conditions while 17.2% answered yes to one question, 3.6% to two, and 1.1% to three or more questions (81). The most frequently reported medical problems (>3.0%) were hypertension, cardiovascular disease, allergies, and chronic obstructive pulmonary disease (COPD) (81). The most uncommon problems reported (<0.5%) included chronic liver and kidney disease, infectious disease, and malignant tumours (81). The frequency of most conditions increased with age as did the ASA classification (81).

Interestingly, a similar method of assessment was developed by the University of Southern California School of Dentistry to assess medically-compromised patients (82). The RAM-E system was developed on the system of recognition of risk diseases in the medical history (R), assessment of treatment risk (A), safe management of the patient by using simple treatment modification for safety (M), and medical emergency care where required (E) (82). Assessment of the patient’s medical conditions utilised the American Society of Anesthesiologist Physical Status Classification System but provided flexibility for practitioner input. The benefit of this modification would be that it not only encouraged pre-assessment of the patient, but also encouraged a detailed recording of treatment modifications used (stress reduction, ischaemia-based modifications, adjuvants) and their success for future reference (82).

Such modifications included, firstly, stress-reduction elements aimed at reducing pain, anxiety and stress throughout the dental procedure to reduce cardiac stress through ensuring adequate pre-operative rest, use of local anaesthesia, and post-operative pain management (82). Secondly, ischaemia-based modifications, such as intra- operative oxygen and appropriate sedation to adjust treatment for ischaemic condition and finally, adjuvants such as reminders about other possible influences on treatment including allergies, need for antibiotic prophylaxis, pacemakers, and anticoagulants to remind the practitioner of other considerations throughout the procedure (82). 61

The reality is that the literature to date does not provide a distinct definition of what the dental profession considers a medically-compromised patient. An exhaustive list of conditions would change dynamically with advances in understanding of medical conditions and new interventions. Furthermore, the development of such a list denies the acknowledgement of the individual circumstances that present with each patient. This is supported by some who write that systemic disorders and treatments may cause complications in dental and oral health care but that the management of patients with these presentations should take into account not only the severity of the condition and ongoing management, but also those personal factors that make each of our patients unique and individual (83).

Additionally, in considering whether patients are medically-compromised, oral health professionals cannot ignore the relevant aspects of the medical history and medications, but should also consider how this will influence the care they provide. In order to treat these individuals effectively, practitioners must not only have an adequate understanding of the interaction between medical and oral conditions and their respective treatments, but also have the ability and skills to communicate effectively with other medical professionals about these matters (83). Individual health professionals must reflect and assess whether they have the adequate knowledge, skills, and facilities to provide the best care for these patients. This may form part of determining their scope of practice (84). In addition, although patients may initially be suitable to be treated in a general dental setting, the chronicity of many conditions prevalent in developed countries invariably results in the eventual deterioration of the patient’s health circumstances. In these situations, general dental practitioners should be ready and feel comfortable to refer patients when they can no longer provide the best practice care in light of the chronic conditions and their own personal experience.

2.5.3 Prevalence of chronic medical conditions

The World Health Organization 2002 report Preventing chronic diseases: a vital investment projected that 39% of the global burden of diseases in 2005 would be the result of communicable diseases, maternal and perinatal conditions, and nutritional deficiencies (60). The report estimated that cardiovascular disease would contribute 10% of this burden, 5% from cancers, 4% from chronic respiratory conditions, and 1% due to diabetes (60).

The incidence and prevalence of various chronic diseases worldwide and for different regions for 2004 were reported by the World Health Organization’s The Global Burden of Disease study and are presented in Tables 7 and 8 (36). According to this study, diarrhoeal diseases had the highest incidence across all regions and worldwide. Higher worldwide rates of lower respiratory infections were largely due to the high incidence of infections in all regions except Africa while the opposite was the case for the worldwide incidence of malaria which was primarily the result of incidence rates in Africa with significantly lower rates in all other regions. Overall, incidence rates of most conditions were generally higher in Africa, except for tuberculosis which was highest in the western Pacific, and pertussis, measles, and tetanus which were higher in south-east Asia. These two regions also had higher rates of malignant neoplasms than all other regions including Africa (36).

This study reported, by prevalence, that the most common medical conditions worldwide were iron deficiency anaemia, migraines, asthma, and diabetes mellitus (36). Unlike incidence rates, prevalence rates of most conditions were highest in the south-east Asia and western Pacific regions. In particular, the prevalence of tuberculosis, iron deficiency anaemia, migraines, chronic obstructive pulmonary disease, and osteoarthritis were highest in these regions. The prevalence of dementia and Parkinson’s disease were higher in Europe and the Americas. Africa reported the

lowest rates of dementia, Parkinson’s disease, angina, chronic obstructive pulmonary disease, and rheumatoid arthritis but the highest rates of diabetes mellitus (36).

Table 7. Incidence (millions) of selected conditions by WHO regions, 2004 (36)

World Africa Americas Eastern Europe South- Western Mediter- East Asia Pacific ranean Tuberculosis 7.8 1.4 0.4 0.6 0.6 2.8 2.1 Diarrhoeal disease 4620.4 912.9 543.1 424.9 207.1 1276.5 1255.9 HIV 2.8 1.9 0.2 0.1 0.2 0.2 0.1 Pertussis 18.4 5.2 1.2 1.6 0.7 7.5 2.1 Measles 27.1 5.3 00 1.0 0.2 17.4 3.3 Tetanus 0.3 0.31 0.0 0.1 0.0 0.1 0.0 Meningitis 0.7 0.3 0.1 0.1 0.0 0.2 0.1 Malaria 241.3 203.9 2.9 8.6 0.0 23.3 2.7 Lower respiratory 429.2 131.3 45.4 52.7 19.0 134.6 46.2 infections Malignant 11.4 0.7 2.3 0.5 3.1 1.7 3.2 neoplasms Congestive heart 5.7 0.5 0.8 0.4 1.3 1.4 1.3 failure Stroke (first ever) 9.0 0.7 0.9 0.4 2.0 1.8 3.3

Table 8. Prevalence (millions) of selected conditions by WHO regions, 2004 (36)

World Africa Americas Eastern Europe South- Western Mediter- East Asia Pacific ranean Tuberculosis 13.9 3.0 0.5 1.1 0.6 5.0 3.8 HIV infection 31.4 21.7 2.8 0.5 2.0 3.3 1.0 Iron deficiency 1159.3 193.8 66.4 88.5 77.7 462.4 269.0 anaemia Diabetes mellitus 220.5 9.7 46.4 17.9 45.4 44.7 56.0 Depressive disorders 151.2 13.4 22.7 12.4 22.2 40.9 39.3 Bipolar affective 29.5 2.7 4.1 2.1 4.4 7.2 8.9 disorders Schizophrenia 26.3 2.1 3.9 1.9 4.4 6.2 7.9 Epilepsy 40.0 7.7 8.6 2.8 4.1 9.8 7.0 Alcohol use 125.0 3.8 24.2 1.1 26.9 21.5 47.3 disorders Dementia 24.2 0.6 5.0 0.6 7.6 2.8 7.4 Parkinson disease 5.2 0.2 1.2 0.2 2.0 0.7 1.0 Migrainea 324.1 12.6 59.7 16.2 77.3 70.3 87.5 Blindnessb 42.7 7.6 2.9 4.1 2.3 15.7 10.1 Hearing loss 275.7 37.6 31.0 19.5 44.5 89.8 52.9 (moderate or greater)c Angina pectoris 54.0 2.0 6.3 4.1 17.2 16.0 8.2 Stroke survivors 30.7 1.6 4.8 1.1 9.6 4.5 9.1 COPD 63.6 1.5 13.2 3.3 11.3 13.9 20.2 Asthma 234.9 30.0 53.3 15.4 28.8 45.7 61.2 Rheumatoid arthritis 23.7 1.2 4.6 1.3 6.2 4.4 6.0 Osteoarthritis 151.4 10.1 22.3 6.0 40.2 27.4 45.0 a Prevalence of migraine sufferers, not of episodes b Blindness (<3/60 presenting visual acuity) due to glaucoma, cataracts, macular degeneration or refractive errors c Hearing loss threshold in better ear of 41 decibels or greater (measured average for 0.5, 1, 2, 4kHz)

Disability Adjusted Life Years (DALYs) are also commonly used as an indicator of burden of diseases. One DALY represents the loss of the equivalent of one year of full health (36). The estimated burden of chronic diseases worldwide reported by the Global Burden of Disease Study 2019 is shown in Table 9 (85). The list of conditions demonstrates the significant burden associated with chronic medical conditions (85).

Table 9. Leading causes of burden of disease (Disability Adjusted Life Years (DALYs)) (85) Disease or injury % of total DALYs Neonatal disorders 7.3 Ischaemic heart disease 7.2 Stroke 5.7 Lower respiratory infections 3.8 Diarrhoeal diseases 3.2 Chronic obstructive pulmonary diseases 2.9 Road injuries 2.9 Diabetes 2.8 Lower back pain 2.5 Congenital birth defects 2.1 HIV/AIDS 1.9 Tuberculosis 1.9 Depressive disorders 1.8 Malaria 1.8 Headache disorders 1.8 Cirrhosis 1.8 Lung cancer 1.8 Chronic kidney disease 1.6 Other musculoskeletal 1.6 Age-related hearing loss 1.6 Falls 1.5 Self-harm 1.3 Gynaecological diseases 1.2 Anxiety disorders 1.1 Dietary iron deficiency 1.1

The Australian Institute of Health and Welfare published Australia’s Health 2020, which reported that in 2017-18 over 11 million Australians had one or more chronic medical conditions, as defined by the study (86). These conditions included arthritis, asthma, back pain and problems, cancer, cardiovascular disease (including stroke and vascular disease), chronic obstructive pulmonary disease (COPD), diabetes, chronic kidney disease, mental and behavioural conditions (including mood disorders, alcohol and drug problems, and dementia), and osteoporosis (86). Eighty percent of Australians over the age of 65 had more than one of chronic condition during this period, demonstrating the issue of comorbidity in an ageing population (86). Similar

issues of multimorbidity also increased with increasing socioeconomic disadvantage, although no difference was seen based on residential location (86).

Overall, chronic conditions were estimated to contribute around 66% of the total burden of disease in Australia in 2015 (87). Chronic conditions alone were responsible for approximately 51% of all hospitalisations in 2017-18 and contributed to almost 90% of deaths with coronary heart disease, back pain, chronic obstructive pulmonary disease, dementia, and lung cancer classified as the top five diseases causing burden (87).

The most-costly disease groups to health expenditure in Australasia for the 2008-09 period were identified as cardiovascular disease, oral health, mental disorders, and musculoskeletal conditions (88). Their relative proportions of health expenditure during this period are shown in Table 10 and highlight not only the importance of management of these chronic conditions, but also the importance of managing oral health as part of general health (88).

Table 10. Mostly costly disease groups in Australia and New Zealand based on percentage of total health expenditure 2008-09 (88)

Disease groups Amount ($ billion) % of total health expenditure Cardiovascular disease 7.74 10.4 Oral health 7.18 9.7 Mental disorders 6.38 8.6 Musculoskeletal issues 5.67 7.6

2.5.4 Bleeding conditions and blood disorders

Although these chronic conditions are likely to be seen by all oral health professionals, specialists in special needs dentistry may be called on to manage less common bleeding conditions and blood disorders. The potential risks of bleeding can present

challenges to even routine care provided by dentists. Many of the implications for the general health of these patients also extend to and involve the oral cavity.

The Australian Bleeding Disorders Registry (ABDR) is a clinical registry for patients with bleeding disorders. During 2017-18, over 6,000 Australians were listed on this register (89).

Table 11. Number of people in Australia Bleeding Disorders Registry (ABDR) 2017-18 and bleeding condition (89)

Bleeding conditions ABDR (N) Haemophilia A Hereditary 2302 Acquired 74 Haemophilia B Hereditary 541 Acquired <5 Other 162 Other Factor deficiency (Total) 449 Factor V 15 Factor VII 73 Factor X 19 Factor XI 273 Factor XII 18 Factor XIII 24 Platelet disorder 302 Vascular disorders 7 Fibrinogen disorders 91 Von Willebrand Disease Hereditary 2146 Acquired 27 TOTAL 6105

Infectious blood conditions have led an evolution of infection control measures used by all health professionals. Many of these infections, but particularly the human immunodeficiency virus (HIV), can not only seriously affect general health through its effects on the immune system, but also manifest with unique oral manifestations and result in significant changes in the management of oral care. 68

In Australia, the National Notifiable Diseases Surveillance System (NNDSS) maintains records on various infectious diseases throughout the community in the interests of public health and safety, with the primary role of detecting and responding to outbreaks of infectious diseases (90). The Kirby Institute for infection and immunity reported that in 2018 there were estimated to be 28,180 Australians living with HIV, representing a prevalence of 0.14%, with this being higher among gay and bisexual men (8.1%) and marginally higher among people who are intravenous drug users (1.7%) (91). In addition, it is estimated that 96% of those diagnosed were receiving ongoing care, with 89% (22,710 people) receiving antiretroviral treatment (91). During the period, there were estimated to be 143,580 Australians living with hepatitis C and 226,566 with hepatitis B (91).

2.5.5 Cancer

Bleeding conditions and blood disorders are not the only conditions with oral health implications. Cancer, for example, also has a significant impact, not only because it can affect the oropharyngeal region, but also because of the complexities around its management with surgical, chemotherapeutic, and radiotherapeutic modalities that can impact on overall health as well as oral health.

The World Health Organization has reported that cancer is among the leading causes of morbidity and mortality worldwide (36). The World Cancer Report, produced by the International Agency for Research on Cancer, an affiliate organisation of the World Health Organization, reported that in 2018 cancer was either the leading or second leading cause of premature death in 134 countries representing 4.5 million deaths yearly (92). Cancer was the leading cause of death in Canada, USA, Argentina, Chile, most countries in Europe, Australia, New Zealand, Japan, Korea, Singapore, Thailand, and Vietnam (92). 69

Approximately 18.1 million new cases of cancer were diagnosed worldwide in 2018 (92). Table 12 shows the International Agency for Research on Cancer figures on cancer incidence worldwide by region (93). Overall, the Asian region had the highest incidence and mortality rates for cancer (93). Figures by country and trends over time demonstrated increasing inequalities in diagnosis and treatment with these more favourable in more developed countries (92)

Table 12. Estimated age-standardised incidence rates (per 100 000) for cancer diagnosis site and by continent in 2018 (93)

World Africa Latin North Asia Europe Oceania America America Breast 46.3 36.8 44.7 60.3 34.4 74.4 46.3 Prostate 29.3 28.5 45.5 53.4 11.5 62.1 29.3 Lung 22.5 4.9 8.7 21.4 22.7 29.8 22.5 Colorectum 19.7 8.2 13.2 17.8 17.7 30.0 19.7 Cervix uteri 13.1 30.0 23.0 20.5 11.9 11.2 13.1

The Australian Institute of Health and Welfare reported that just under 150,000 Australians are estimated to be diagnosed with cancer in 2020 with breast and prostate cancers the most common diagnoses (94). In addition, during the same year, it is anticipated that approximately 43,000 Australians would die from cancer, with lung and colorectal cancers remaining the leading causes of death (94). Similar to international figures, the five most common cancers in Australia in 2018 were lung, colorectal, breast, brain, and pancreatic cancer (94).

Further, it is projected that 5,021 new cases of head and neck cancer will be diagnosed in Australia in 2020 (94). The 5-year survival rate for head and neck cancer is 71% (94). This is supported by Farah and co-authors who found that for the 27-year period between 1982 and 2008, a total of 60,826 cases of cancer of the lip, oral cavity, and oropharynx were diagnosed in Australia equating to 2.9% of cancers diagnosed and

1.6% of cancer-related deaths (95). The lip was the most common site followed by the tongue, oropharynx, salivary glands, and floor of mouth (95).

2.5.6 Cardiovascular disease

Like cancer therapies, medical interventions for cardiovascular disease can have significant impacts on the way dental treatment is provided to these patients. In addition, interactions between oral health, periodontal disease, and cardiovascular disease have been established. As is the case with general health, advanced cardiovascular disease may also necessitate modifications to oral care provision.

Cardiovascular disease is the leading cause of death worldwide (96). In 2016, it was estimated that 17.9 million people died from cardiovascular disease representing 31% of all global deaths (96). Of these, 85% were attributed to heart attacks and strokes (96).

The Australian Institute of Health and Welfare estimated that 5.6% of the adult population were affected by some form of heart disease in 2020 (97). Of these, 580,300 Australians had a diagnosis of coronary heart disease, 386,900 had a stroke, and 104,900 were diagnosed with heart failure (97). As of 31 December 2018, 5,000 persons living in the Northern Territory, Western Australia, Queensland, and South Australia had a history of rheumatic heart disease with 87% of these cases occurring in indigenous Australians (97). Some 2,400 Australian babies are estimated to be born with congenital heart disease every year (97).

In 2017-18, cardiovascular disease was the principal diagnosis for 11% of hospitalisations in Australia representing 1.2 million hospitalisations (97).

Furthermore, 1.8% of the Australian population identified cardiovascular disease as their main disabling condition (40). As is expected, due to the chronicity of cardiovascular disease, the proportion of people with heart disease in the Australian population steadily increased with age with coronary artery disease ranked as the top disease burden for males aged above 44 years and females aged 65 to 84 (98). These data demonstrate the significant proportion of the Australian population for whom oral health professionals need to consider the impact of their medical status on their dental treatment.

2.5.7 Diabetes mellitus

As is the case with cardiovascular disease, research continues to establish the interactions between diabetes mellitus and oral health. Diabetic conditions are known to have a significant impact on the day-to-day life of individuals affected and in terms of disease burden worldwide (36). The condition itself has implications for multiple body systems that extend beyond impairment of metabolism to impacts on immune function and healing, many of which influence the oral health care of these patients.

The World Health Organization estimates the global adult prevalence of diabetes to be approximately 9% (99). The International Diabetes Federation estimated that this equated to 476 million adults who were living with diabetes worldwide in 2017 with this number projected to increase to 693 million by 2045 (100). The Global Burden of Disease Study 2017 reported that the burden related to diabetes had increased significantly since 1990 and was estimated to be responsible for 67.9 million disability- adjusted life years (101). It remained one of the top ten causes of death globally with the highest observed age-standardised mortality in Oceania (101).

The Australian Bureau of Statistics has estimated that over 5% of adults, or 1.2 million Australians, had diabetes in 2018, although the figure is believed to be an under- estimate as it was based on self-reported data (98). The prevalence of diabetes increased with age and was higher in males and the indigenous population (98).

Diabetes-related illnesses place a significant burden on societies and health care systems. During the 2003-04 period alone, 473,864 hospital visits in Australia had a diabetes-related diagnosis (102). About half (51%) of these cases with the principal diagnosis of diabetes were single-day hospitalisations which were attributed primarily to hypoglycaemic and hyperglycaemic attacks from poor diabetic control (102). In 2016, it was estimated to be responsible for 2.3% of the total burden of disease, the 12th leading cause of disease burden, and contributed to approximately 10% of all deaths (98).

2.5.8 Musculoskeletal and rheumatic conditions

Musculoskeletal and rheumatic conditions can also place significant strain on the lives of individuals as well as on the health care system. Often this is a result of the affected persons seeking medical interventions in an attempt to attain some relief from symptoms. The effects of these conditions extend beyond the symptoms experienced and impact on other aspects of general health, day-to-day functioning, and quality of life. These can extend also to influence their oral health, the care they receive, and their ability to care for themselves.

Rheumatic and musculoskeletal conditions comprise over 150 diseases and syndromes which may include joint diseases, forms of physical disability, spinal disorders, and conditions associated with trauma. As a result, they represent a complex group of

conditions to study. The conditions that most significantly impact on oral health are forms of arthritis and osteoporosis.

The Australian Bureau of Statistics reported that arthritis and musculoskeletal conditions affect about 1 in 3 Australians (98). In 2014-15, back pain and problems were the most common of these conditions followed by arthritis, which affected 3.5 million, with another 801,000 (3.5%) having a diagnosis of osteoporosis (98). On a global level, the World Health Organization reported that approximately 15% of the global Caucasian population aged 50-59 years were affected by osteoporosis with the figure increasing to 70% in those aged over 80 years of age (103).

Similar to international data, the prevalence was higher in women (98). In addition, 79% of people with arthritis and 65% of those with back pain and problems were likely to have at least one other chronic condition, demonstrating the high prevalence of comorbidity in this group of individuals (98). In addition, the level of impairment associated with these conditions was high with 13% of individuals with a disability in Australia in 2015 reporting arthritis as their main long-term health condition causing the disability (38).

Similarly, on a global level, these conditions continue to be an area of concern because of the increased prevalence with age and the ageing population with people living longer. Based on the Global Burden of Disease study, it was estimated that all musculoskeletal conditions combined resulted in 21.3% of the total years lived with disability globally, second only to mental health issues (104). In terms of disability- adjusted life years, these conditions were the fourth greatest burden on the health of the world’s population (104).

Traumatic hip fractures are one of the more common outcomes of osteoporotic disease and a major cause of morbidity and mortality (103). The World Health Organization reported that 20% of cases are fatal with a further 50% resulting in permanent disability (103). It is estimated that 25% of men and 40% of women aged 50 or over in Australia will experience a minimal trauma fracture (105). In 2011-12, 19,000 Australians aged 50 years and over were hospitalised due to an osteoporotic hip fracture (105). Although the rate of these fractures is reported to have decreased over time, the actual number of fractures continues to increase due to the increasing number of older Australians in the population (105).

The morbidity associated with musculoskeletal conditions can significantly impact on an individual’s independence, particularly given these health issues are more likely to affect older adults in the population. Reduced mobility can affect the ability to complete activities of daily living and result in significant barriers to accessing health care. As a result, in addition to the very direct implications of these conditions on oral health care, in particular the use of anti-resorptive therapies in osteoporotic individuals, many aspects of the conditions themselves can have a direct and indirect impact on oral health care, and increase the need for this health care to be adapted to their needs.

2.5.9 Pulmonary conditions

Pulmonary conditions comprise a heterogenous group of conditions that can cause significant problems associated with respiration and normal gas exchange. The significant variation in these conditions and how they are managed mean that impairments of more advanced conditions can require modifications to normal provision of dental care. Likewise, many of the medications used to manage these conditions can cause changes in the oral cavity relevant to all oral health practitioners.

Respiratory conditions are relatively common. In 2016, the World Health Organization estimated that more than 339 million people worldwide suffer from asthma with a further 251 million people living with chronic obstructive pulmonary disease (COPD) (106, 107). According to these same estimates, 24.8 million DALYs and 418,000 deaths were attributable to asthma alone (106). The Australia Bureau of Statistics 2014-15 National Health Survey estimated that approximately 7 million Australians, or almost one third of the population, suffered from a chronic respiratory condition (98). The two most common conditions were hayfever (19%) and asthma (11%) (98). Chronic obstructive pulmonary disease was estimated to affect 460,400 Australians, or 5.1% of the population (98).

In addition to considering the impact of respiratory conditions on oral care and dental treatment, dental practitioners have a role in the treatment of obstructive sleep apnoea. This condition refers to abnormal interruptions in breathing during sleep, resulting in episodes of oxygen desaturation, caused by intermittent upper airway obstruction (108). Re-awakening Australia, a report on the economic cost of sleeping disorders, estimated that approximately 775,000 Australians, or 4.7% of the population over 20 years of age, suffered from obstructive sleep apnoea in 2010 (108). The condition was more common in men with prevalence also increasing with age (108).

2.5.10 Renal and hepatic conditions

The liver and kidneys, like all other body systems, play an important role in maintaining general health. These systems, however, play vital roles in removing toxins and assisting in regulating fluids and electrolytes in the body. Their role in metabolism of medications impacts significantly on everyday medical and dental practice. Likewise, impairment of these vital systems can necessitate significant alterations to normal treatment protocols.

The Australian Institute of Health and Welfare reported that during 2011-12 approximately 1.7 million Australians, of 10% of the population, had some form of chronic kidney disease (109). Prevalence was similar across gender and remoteness of residence but increased with age and socioeconomic disadvantage (109). In 2018, the incidence of end-stage kidney disease in Australia was 11 cases per 100,000 population, representing 8 cases diagnosed every day (110). The leading causes of end-stage kidney disease were diabetes (38%), glomerulonephritis (16%), hypertension (13%), and polycystic disease (6.6%) (86). During the period of 2017-18, chronic kidney disease was responsible for 1.8 million hospitalisations, presenting 16% of all hospitalisations in Australia (110). The total burden of chronic kidney disease in Australia has been increasing and is estimated to be 1.2% of the total burden in 2015 (87).

According to the Kirby Institute, using data from the National Notifiable Disease Surveillance System, there were an estimated 226,566 Australians living with chronic hepatitis B and another 129,640 Australians were living with chronic hepatitis C in 2018 (91). Across both conditions, notification rates and prevalence have decreased in recent years (91). For hepatitis B, this is thought to be due to successful vaccination programs in Australia with the majority of those with hepatitis B (70%) now born overseas (91). For hepatitis C, reductions have been attributed to the introduction of subsidised antiviral therapies in 2016 (91).

End-stage organ failure is the usual outcome of substantial damage to the kidneys or liver with whole organ transplantation representing the only viable long-term management option to maintain normal body function. In being able to do so, however, immunosuppression is required to prevent rejection of the donor organ. Organ transplants, and the resultant immunosuppression, have a significant impact on

the general health and oral care for these patients. According to the Australia and New Zealand Dialysis and Transplant Registry, there were 13,931 Australians receiving dialysis in 2018 with approximately 1700 Australians waiting for an organ transplant (111). In 2019, some 1500 people received an organ transplant in Australia (Table 13) (112).

Table 13. Organ transplantations completed in Australia, 201 9 (112)

Organ Transplants (n) Kidney 857 Liver 308 Heart 183 Lung 113 Pancreas 40 TOTAL 1501

2.5.11 Medications

Medications represent one of the most common therapeutic medical interventions towards maintaining general health. Their use is wide-ranging from the removal of infection to relief of symptoms. Medications are as important an intervention to oral health care as they are to general medicine. In addition, certain medications can impact significantly on the way in which dental treatment is provided.

In addition to the influences of medications on day-to-day treatment of various conditions, review of the use of medications can provide valuable information on the relative impact of different health conditions at a population level. The World Medicines Situation 2011 reported that the five most common classes of medication were those used to treat conditions associated with the alimentary tract and metabolism, cardiovascular system, central nervous system, respiratory system, and sensory organs (113). These medications represented two thirds of the volume of medication used worldwide (113). Although systemic anti-infectives were used more

widely in low-income countries, medications used mainly to treat chronic diseases represented the greatest proportion of increases in volume during the 2000-08 period reflective of the growing burden of chronic diseases (113). In 2006, 78.5% of the global pharmaceuticals expenditure was from high income countries representing only 16% of the world’s population (113). Despite this, poorer countries were reported to spend a greater proportion of health expenditure on medicines than high-income countries with the out-of-pocket expenditure representing the major source of pharmaceutical payments in all but high-income countries due to public health insurance and social security systems (113).

Australia is an example of one such system that provides subsidised prescriptions under the Pharmaceutical Benefits Scheme (PBS) (114, 115). Under this scheme, patient contributions towards the cost of medications are capped at $41.00 from 1 January 2020 (115). These costs are subsidised further for retired Australians over the age of 65 years that meet an income and assets test (pensioners) and other concession patients defined by low income, disability, and other measures of social disadvantage (115). Additionally, a Safety Net Scheme exists to protect patients with high medication needs (115). The Department of Human Services (DHS) maintains records of prescriptions subsidised under this scheme which is reported annually in the Australian Statistics on Medicine report (114).

The most commonly prescribed medications in Australia for 2015, by medication group and individual drug, are presented in Tables 14 and 15 (114). These medications were consistent with findings of the impacts of chronic diseases on the Australian health care system, in particular, the most common chronic conditions (86). Of the ten most commonly prescribed medications, three each are used to treat cardiovascular and alimentary conditions, and one used to treat conditions of the nervous system with the final three medications on the list being anti-infectives (114).

Table 14. Total number of subsidised (PBS) prescriptions in Australia by medication group, 2015 (114)

Medication group PBS prescriptions Cardiovascular system 66,613,110 Nervous system 50,927,262 Alimentary tract 31,769,327 Anti-infectives 14,173,359 Respiratory system 12,042,449 Blood and blood forming 10,019,801 Sensory organs 8,620,689 Musculo-skeletal 7,850,114 Genitourinary system 3,601,733 Hormonal preparations 3,587,541 Anti-neoplastic 3,557,383 Dermatologicals 3,079,839 Anti-parasitic products 604,857 Various 596,042 Other 176,871

Table 15. Top 10 medications by prescription count in Australia, 201 5 (114)

Medication Total number of prescriptions Atorvastatin 10,557,512 Rosuvastatin 9,432,332 Esomeprazole 8,868,265 Paracetamol 7,365,631 Pantoprazole 6,353,909 Perindopril 6,119,841 Amoxycillin 5,864,658 Cefalexin 5,604,590 Metformin Hydrochloride 5,155,883 Amoxycillin with Clavulanic Acid 5,067,228

2.6 Psychiatric conditions

As is the case with medical condition, psychiatric conditions comprise a large and heterogeneous group of conditions. The terms “psychiatric condition”, “psychological condition”, “mental illness”, and “mental disorder” are often used interchangeably. As a result of prominent awareness campaigns, the term “mental health” condition has

more recently become the prominent term when referring to this collection of conditions.

The World Health Organization described mental disorders as a broad range of problems with different symptoms “generally characterised by some combination of abnormal thoughts, emotions, behaviour, and relationships with others” (116). Many individuals affected by these conditions have effective strategies for prevention or to alleviate the suffering caused resulting in the conditions themselves being underdiagnosed. Despite this, the burden of these conditions continues to grow with the World Health Organization raising concerns regarding the “significant impacts on health and major social, human rights, and economic consequences in all countries of the world” (116). Similarly, in Australia, mental health conditions represent one of the most common chronic conditions (86).

Internationally, the Diagnostic and Statistical Manual of Mental Disorders (DSM) is recognised as the authoritative guide in the diagnosis of psychiatric disorders (117). Originally published in 1952, the current edition, DSM 5, is designed as a handbook for health care professionals containing descriptions, symptoms, and criteria for diagnosing mental disorders and providing a common language for clinicians to communicate about their patients (117).

In revising the classification system, DSM-5 defined a mental disorder as “a syndrome characterised by clinically significant disturbance in an individual’s cognition, emotion regulation, or behaviours that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning” (117). The new definition is more consistent with that provided by the World Health Organization in characterising the effects on the individual. However, for the first time, the definition also attempts to attribute these symptoms to a variety of potential aetiologies. The definition 81

retains associations with “significant stress in social, occupational, or other important activities” but previous references to “risks” and impairment of functioning are removed (117). Instead, the new definition attempts to address repeated concerns about the restrictiveness of diagnostic criteria by defining these conditions in such a way that they are associated with behaviours that do not include what would be considered expected or culturally-accepted responses (117).

In Australia, most professional organisations, such as the Royal Australian and New Zealand College of Psychiatrists (RANZCP) and the Australian Psychological Society, use these international resources to provide guidance on definitions and diagnostic criteria for mental conditions (118, 119). One organisation, however, that has produced their own definition is the Mental Health Foundation of Australia defining mental illness as “a health condition that changes a person’s thinking, feelings, or behaviour (or all three) and that causes the person distress and difficulty in functioning” (120). Although succinct in comparison to the DSM-5 definition, it still maintains the three basic principles: that it is a health condition, how it may manifest to the individual, and the possible impacts of these symptoms.

Definitions of mental health have also been provided in Australian legislation. In the state of Victoria, mental health is defined under Section 4 of the Mental Health Act 2014 (Victoria) (121). It defined mental illness as “a medical condition that is characterised by a significant disturbance of thought, mood, perception, or memory” (121). In addition, it outlines that a person is not considered to have a mental illness merely because they express different beliefs or preferences, engage in socially- unacceptable or illegal conduct, are intellectually disabled, use drugs or alcohol, have a particular social, financial, cultural, or racial status, are or have been involved in family conflict, or have previously been treated for a mental illness (121).

The basis of this legal definition is consistent in characterising mental illnesses as affecting aspects of thought, emotion, perception, and social interaction diagnosed based on clinically-defined criteria. Victorian law goes further in a similar manner to that of DSM-5, discussing behaviours that may manifest but is clear in saying that these, by themselves, do not necessarily identify someone suffering from mental illness. These changes in cognition and behaviour can have significant impacts on the ability of these individuals to seek health care and can often have implications to provision of informed consent.

The Global Burden of Disease 2017 study reports that depression is the most common mental health condition globally affecting an estimated 264 million people (85). Other common psychiatric conditions include bipolar disorder (45 million), schizophrenia and other psychoses (20 million), and dementia (50 million) (107). Depressive disorders, self-harm, and anxiety disorders were all ranked within the top 25 leading causes of DALYs with a higher proportion of mental health conditions reported in younger age groups (10-24 years, 25-49 years) (85).

The National Survey of Psychotic Illness 2010 estimated that 0.31% of Australians had a psychotic illness (122). Schizophrenia was the most common of these disorders (47.0%) followed by bipolar and mania (17.5%), schizoaffective disorder (17.5%), and severe depression (8.7%) (122). Unlike other psychological conditions, men were more likely to be affected by psychotic illness, particularly in the 25-34 year old age group (122). These conditions also tended to be associated with other medical comorbidities such as chronic back, neck or other pain (31.8%), asthma (30.1%), heart or circulatory problems (26.8%), and obesity (45.1%) (122). Smoking (66.1%), alcohol abuse (males 58.3%, females 38.9%), and cannabis use (males 63.2, females 41.7%) were all higher than the general population with only 12.9% participating in drug and alcohol treatment programs (122). Almost half (49.5%) of individuals affected by psychosis had attempted suicide at some point in their lifetime compared with 3.7% in 83

the general population (122). Of participants surveyed, 91.6% were taking prescribed medications with the majority (74.0%) taking atypical antipsychotics with clozapine the most commonly prescribed medication (122). Other common medications included other antidepressants (37.4%), mood stabilisers (26.7%), and anxiolytics, hypnotics and sedatives (17.8%) (122).

Two years later, the 2012 Survey of Disability, Ageing and Carers (SDAC) reported that 3.4% of Australians had a psychological disability, which included nervous and emotional conditions which restricted daily activities, mental illness for which help or supervision were required, or a brain injury that resulted in either of the previous conditions (57). Although no gender bias was found, men tended to be affected more in younger age groups whereas the prevalence in women increased with age (57). As a result, state and territory figures reflected age differences in their relative populations with Tasmania and South Australia having the highest prevalence (57). Ninety-six percent of people with a psychological disability required assistance with at least one activity of daily life and had lower rates of participation in education and employment (57). Only 23.2% of people aged 15 to 64 years with a psychological disability were employed with the most common occupations being labourers (28.6%) and professionals (16.7%) (57).

An increase in the prevalence rate in 2009 (2.8%) was largely attributed to a significant increase in the 15-24 year old age group which almost doubled during the period (from 1.2% in 2009, to 2.3% in 2012) with the change largely due to an increase in anxiety and autism-related disorders (123). Psychological disabilities represented 18.5% of all disabilities reported and were also found to be associated with a number of other health conditions including depression (38.7%), arthritis (27.5%), back problems (24.0%), and hypertension (22.7%) (123). Individuals with a psychological disability were 14 times more likely to have dementia compared with other disabilities (123). However, the most common co-morbidity amongst individuals with psychological 84

disability were anxiety-related disorders, including phobias, anxiety disorders, nervous tension, and stress (38.9%) (123).

2.6.1 Dental anxiety and phobia

Dental fear and phobia are both common in the Australian population. Using the Index of Dental Anxiety and Fear (IDAF-4C), in 2008 the prevalence of dental fear was reported to be in the range of 7.8-18.8% while dental phobia was lower and ranged from 0.9-5.4% (124). Phobia was significantly associated with feelings of fear or sickness associated with blood, injection, injuries, and medical procedures (49.2%) (124). Concerns about the cost of dental treatment (64.5%), needles and injections (46.0%), and painful or uncomfortable procedures (42.9%) were identified as common contributors to anxiety associated with dental visits (124). In addition, 44-48% reported a previous aversive experience involving pain or considerable discomfort (124). Anxiety was more common amongst females and those who attended the dentist less frequently (124). These results corroborate previous estimates of dental fear (16.1%) in the Australian population and in other countries (125-132).

2.7 What is a patient with “special needs”?

The definition of “special needs dentistry” in Australia is broad, encompassing individuals with intellectual disabilities, medical issues, physical impairments, or psychiatric conditions (16). This review of the literature pertaining to these conditions and their prevalence in Australia and internationally, provided a picture of the breadth of this population that may fit within this definition and may benefit from care with specialists in this area. However, having these conditions alone does not necessarily make a patient “special needs”. The other key component of the definition of “special needs dentistry” that must be considered is that these conditions may impact on the oral health of these individuals or the manner in which they receive treatment (16). As

a result, what makes a patient “special needs”, or whether an individual requires specialist-level care, is not necessarily determined by a medical condition or diagnosis itself, but how these interact to impact on oral health needs of the individual, the provision of oral health care, and how they interact with the health system.

3.0 Special needs dentistry and the health care system

3.1 International models of health care

Provision of health care is much more than the relationship between a health practitioner and their patient. This relationship represents merely the last piece in the puzzle. Often to reach this point, both the health professional and patient have had to navigate the complexities of the health care systems. Although these systems are established to provide for the health needs of the population, often patients are confronted by barriers to accessing care by the systems themselves. Thus, a basic understanding of the health care system is essential to acknowledge and address these barriers, particularly for special needs populations which may be faced with more barriers than the general population. The World Health Organization defined a health system as “all the activities whose primary purpose is to promote, restore and/or maintain health” including the people, institutions, and resources arranged by established policies with the aim of improving the health of the population they serve (133). Thus, a good health system “delivers quality services to all people, when and where they need them” (98).

Health care systems vary from country to country with funding mechanisms, workforce, policies and facilities determined by the relevant jurisdiction. Despite this, models of health care systems that exist can generally be summarised into four basic models (134):

• The Beveridge model, where universal health care is provided and funded by government taxation; • The Bismarck model, in which an insurance system is financed jointly by employers and employees; • The national health insurance model (Tommy Douglas model), where universal insurance is provided by the private sector but financed by a government-funded insurance program; or • The out-of-pocket model under which medical payments are purely borne by the individual (134).

An exhaustive examination of every country’s health system is beyond the scope of this review, but two examples are provided as a comparison with the Australian health care system, those of the United Kingdom and the United States of America.

3.1.1 Health care in the United Kingdom

The National Health Service (NHS) was launched in 1948 and has grown to become the world’s largest publicly funded health service (135). Formed on the basic principles of universal health care that is free at the point of delivery and provided on the basis on clinical need rather than ability to pay, the service still largely remains free for all UK residents (135, 136). Although originally designed as a single system for the United Kingdom, more recently the system has devolved with funding and administration becoming the responsibility of the separate governments and parliaments in England, Wales, Scotland, and Northern Ireland (135). The system is still funded directly by taxation with a total budget in the range of £143 billion (137). NHS England is the independent body largely responsible for the governance of the health service in England (135). Its role is to establish priorities and the direction of health care as well as commission projects at a national level (135). On a regional level, clinical commissioning groups (CCG) are responsible for the planning and commissioning of health care services in local areas (135).

The NHS has a largely two-tiered structure (135, 136). Providers of primary care are the first point of contact for non-urgent health care in the community and may consist of a wide variety of health professionals, including, but not limited to, general medical practitioners, dentists, and pharmacists (135, 136). The aim of these professionals is to provide community-based care to resolve problems locally, promotion preventive strategies, and provide ongoing care for chronic conditions (135, 136). Patients with more complex needs may be referred for more specialised management that may be based in either the community or hospital setting (135, 136).

As a true universal health care system, dental services are provided under the NHS (135, 136). However, although most health services provided remain free, dental services may attract charges depending on the treatment required (136). Similar co- payments were also introduced for prescriptions and some optical treatments (136). Under the system, patients are charged for a general course of dental treatment based on the procedures required (138). For example, services included under a “Band 1” course of treatment, at a cost of £22.70, include an examination, diagnostic services (including radiographs), preventive advice and care, a scale and polish, as well as treatments for relief of pain (138). “Band 2” courses of treatment include all items from “Band 1” with the addition of fillings and root canal treatment at a cost of £62.10 (138). Finally, “Band 3” includes prosthetic treatments, such as crowns, bridges, and dentures, in addition to all treatments in Bands 1 and 2 at a total cost of £269.30 (138). Treatment charges may be waived for patients under the age of 18 or those under the age of 19 in full-time education, pregnant patients or those who have had a baby in the last 12 months, patients in an NHS hospital or outpatients receiving treatment by a hospital dentist, and those that meet financial disadvantage criteria (138).

In the UK, patients may also seek dental treatment in the private sector. Doing so may include the benefits of wider choices of treatments on offer and more flexible appointment times. Treatment costs, however, are not regulated by the government. Private dental insurance policies are available to assist with out-of-pocket costs (138).

In establishing its Specialty of Special Care Dentistry, commissioning of the specialty also considered how best to adapt existing health services to meet the needs of patients (139). In particular, the need for services “to be integrated and delivered around the needs of patients, not organisations or training programs” was a central tenant of this process (139).

The current model of care involves the use of managed clinical networks in local health districts based on hub-and-spoke models of care (139, 140). As a result, within local networks of primary clinics, centres staffed by specialists or consultants, and able to provide more complex care, were established. In addition to providing specialist care within these local networks, these centres, under the guidance of consultants and specialists, are able to provide support to the extended dental team and opportunities for training to clinicians wanting to extend their scope of practice and skills (139). In addition, it allowed for specialists to guide care within their local networks and for their patient cohorts by assisting with developing relationships with other local health care providers, while also promoting a shared responsibility between primary care providers and specialists for the management of these patients (93).

3.1.2 Health care in the United States of America

The United States of America, in contrast to most developed countries, does not have universal health care (141). As a result, the costs of treatments and medications are primarily borne by the individual (40% of costs) with services provided by a largely

privatised health care sector (141, 142). The average out-of-pocket health care costs for a US resident, including co-payments for visits to doctors, prescription medications, and health insurance, was $1,122 in 2019 (143).

According to the Organisation for Economic Co-operation and Development (OECD), the US spent more on health care per capita ($4092 per capita) than any other country at approximately 17% of gross domestic product; almost double that of the average of other OECD nations and spending in Australia and New Zealand (Table16) (143). However, despite out-performing other OECD countries in prevention, the US had the lowest life expectancy, and the highest rates of suicide, chronic disease burden, obesity, and rates of hospitalisations from preventable causes (143).

Table 16: Total per-capita spending (USD) on health care for OECD nations, 2019 (143).

Country Public Private Out-of-pocket Total New Zealand 3,108 309 506 3,923 United Kingdom 3,107 207 629 3,943 OECD average 3,038 226 716 3,980 Australia 3,132 597 837 4,566 France 4,111 357 463 4,231 Canada 3,466 759 749 4,974 The Netherlands 4,343 376 570 5,289 Sweden 4,569 71 807 5,447 Germany 5,056 192 738 5,986 Norway 5,289 21 877 6,187 Switzerland 4,545 533 2,069 7,147 USA 4,993 4,092 1,122 10,207

For the majority of Americans, health care costs are mediated through third-party insurers that provide plans through tax-free employer-organised schemes (141). These organisations negotiate pricing for services with private health providers through collective bargaining arrangements (141). This often results in schemes that vary greatly in their coverage with significant out-of-pockets costs (144).

As these insurance schemes are only available to the employed, the Federal and State governments provide several publicly-funded schemes to assist the rest of the population (141). The largest of these is Medicare; a federally-funded program for the elderly, aged over 65 years, the disabled, and those with renal failure and amyotrophic lateral sclerosis (ALS) (141). Other programs that exist include Medicaid (a means- tested program for families and individuals with low income), the Children’s Health Insurance Program (CHIP), government-mandated worker’s compensation for work- related injuries, Department of Veterans’ Affairs health care coverage for injured military veterans and current military personnel and their dependents, and federally- funded care for Native Americans (141).

Like medical care, private dental providers are responsible for most oral health care services in the US (144). As a result, treatment costs are generally borne by the patient (144, 145). Limited services are funded by the Federal Government including Early and Periodic Screening, Diagnosis and Treatment (EPSDT) dental services provided to disadvantaged adults and children under Medicaid and the Children’s Health Insurance Program (CHIP) (145, 146). However, the usage of these services is reported to be relatively low due to low participation rates of private dental providers (146). Medicare, by contrast, does not cover any dental procedures unless they are directly associated with another Medicare-covered condition requiring hospitalisation (146). Several federal agencies also provide direct services to disadvantaged populations and to military personnel and their dependents (141, 144). Special care dentistry is not recognised as a specialty in the United States, but hospital clinics do exist to service the needs of these populations with the costs of treatment borne by the patient.

3.2 Health care in Australia

The Australian health care system involves a complex mixture of public and private sector involvement with varying funding models (147). Most medical treatments come under the universal health care system provided for by the national health insurance scheme, Medicare, which is funded by a levy on income tax, similar to many universal health care systems internationally (147). However, oral health care, as is the case with many other allied health services, is classified as an ancillary health service and funded separately to the Medicare scheme (148).

The provision of health care services has traditionally been the responsibility of state and local governments (147). Largely, this situation remains unchanged today. Amendments to the Constitution (Section 51 xxiiiA) in 1946 allowed for “the provision of pharmaceutical, sickness and hospital benefits, medical and dental services” by the Commonwealth government for the first time (149). No amendments were made, however, with regards to state powers resulting in the current situation of overlapping and shared responsibilities between multiple levels of government in Australia (147, 150). The outcome of this has been that in the current health care system, state and territory governments are responsible for (147):

• The management of and shared funding of public hospitals, • Funding and management of community health services, mental health, and home and community care services including ambulance services, and • Licensing and registration of private hospitals, medical practitioners and health professionals.

The Commonwealth Government of Australia is responsible for the following aspects of the health care system (147):

• Medicare, that provides free access to public hospital treatment and rebates for out of hospital services, such as general medical practitioner and medical specialist services, • The Pharmaceutical Benefits Scheme (PBS), a program that subsidises prescription medications for those eligible for Medicare benefits, • Shared funding with state and territory governments for public hospital services, • Means-tested subsidies for private health insurance, • Funding for public health programs and programs for specific populations, • Administration of residential aged care and programs, • Training of the health workforce, • Funding research, and • Regulation of various aspects of the health systems e.g. safety and quality of therapeutic goods, private health insurance sector.

The delivery of health services is primarily the responsibility of state and local governments within Australia, which includes the provision of public services and the regulation of private services (147). Public services for general medical care are either heavily subsidised or free to the patient (bulk-billed) under Medicare arrangements. Services of private health providers are still eligible for Medicare rebates but may also have out-of-pocket costs. Australian residents are encouraged to subscribe to private health insurance cover through the provision of means-tested rebates and levies regulated by the Commonwealth government (147).

In terms of oral health care specifically, all states and territories of Australia provide a public dental service (151). This service is generally in the form of government-funded clinics and hospitals with a limited range of dental treatments provided by government-employed oral health professionals. Some states contract out limited services to private dentists. In addition, most systems have introduced a system of co-

payments and limit services to holders of concession cards or financially- or geographically-disadvantaged members of the community. The extent of services varies greatly between states as does expenditure by governments (151).

These services are funded through the National Health Reform Agreement and the National Partnership Agreement on Public Dental Services; an agreement whereby the Commonwealth Government provides funding to support states and territories in delivering public dental services (151, 152). Funding allocation is fixed each year based on predicted achievement of certain productivity targets (153). Clinical item codes, which are nominated a proportion of funding units, known as Dental Weighted Activity Units (DWAU), are used to determine treatment output. Each DWAU is funded at a dollar value with funds distributed based on monthly clinical output (153). Direct funding from the Commonwealth Government for public dental services across the country is estimated at approximately $300 million each year (152).

In addition to funding these services, the federal government also provides support for oral health care through means-tested rebates for private health insurance (147, 152). Limited funding is provided for the dental treatment of children between the ages of 2 and 18 through Medicare for means-tested families under the Child Dental Benefits Scheme (CDBS) and for orthodontic treatment for children with cleft lip and palate under Medicare (152). Furthermore, free dental treatment is provided for personnel of the armed forces and for veterans through a scheme administered by the Department of Veteran Affairs (DVA) (147).

For Australians ineligible for public dental services, oral health care must be sought from the private sector (147). The cost of private dental treatment is not regulated by the government, but the way treatment is provided is guided by the Australian Dental Association Inc. (ADA), a professional body representing the dental profession, and the 94

Dental Board of Australia and Australian Health Practitioner Regulatory Agency (AHPRA), the peak regulatory bodies for oral health professionals in Australia (154, 155). The ADA produces a schedule of item numbers and the average costs of treatments in the private sector by state on an annual basis (155, 156). A limited range of subsidies have been provided by the Commonwealth Government across different administrations, however, most of the costs of dental care are borne by the individual (147).

3.3 Oral health care for those with special needs in Australia

With the recognition of special needs dentistry as a dental specialty, most of Australia’s public dental services have evolved to provide specialised units dedicated to the management of individuals with special needs. For most states, these specialist services have come to be closely associated with major general hospitals or dental hospitals. Specialist clinics, operated by specialists in special needs dentistry are located in Brisbane, Sydney, Melbourne, and Adelaide. Specialised hospital-based clinics have also been established in Darwin, Perth, and across Tasmania. However, information about these new units and other units in the Australian Capital Territory were not publicly available to the best of the author’s knowledge.

3.3.1 Dental services for individuals with special needs in Victoria, Australia

The largest oral health referral centre in Victoria for public sector dental care is the Royal Dental Hospital of Melbourne (157). The service is composed of several specialist dental departments that treat eligible patients that are referred for specialist care. In addition, departments also exist that are dedicated to primary care, radiology, and day surgery procedures as well as dental teaching clinics.

The Integrated Special Needs Department (ISND) is one department within this service that provides a range of dental assessments of and treatment to special needs patients including those with physical, intellectual, psychological, geriatric, and complex medical issues (158, 159). A range of services are provided including an outpatient service, domiciliary service, mobile dental van catering for special development schools together with inpatient day-surgery services. The unit also has services that provide oral health care to the homeless, mainly through Ozanam House in North Melbourne, the indigenous community, and for incarcerated youths at Melbourne Youth Justice Centre in Parkville (159). Services are provided by a multi-disciplinary dental team lead by specialists in special needs dentistry.

Dental services are also provided at other tertiary referral centres such as the Victorian Comprehensive Cancer Centre (Peter MacCallum Cancer Institute), the Alfred Hospital, the Royal Melbourne Hospital, and Monash Medical Centre, however documentation regarding the types of services provided and patient mix are lacking (160-162). These clinics have no affiliation with Dental Health Services Victoria or the Royal Dental Hospital of Melbourne. No referral centres for individuals with special needs exist outside of metropolitan Melbourne.

3.3.2 Dental services for individuals with special needs in South Australia

The Special Needs Unit (SNU) at the Adelaide Dental Hospital is the main tertiary referral unit within the South Australian Dental Service (SADS) and for adult patients with special needs in South Australia (163). Referrals are accepted for eligible patients from dental practitioners throughout the South Australian Dental Service and private sector as well as other health professionals, such as general medical practitioners and medical specialists (163). Services are provided by a multi-disciplinary dental team lead by specialists in special needs dentistry.

The unit assists in coordinating dental treatment for patients with special needs across a number of specialist clinics in the metropolitan Adelaide region, and outreach and support programs across the state. The Special Needs Unit at the Adelaide Dental Hospital caters for patients from a variety of backgrounds including those with complex medical conditions that impact on their oral health as well as the physically, psychiatrically, and/or intellectually disabled (164). The Special Needs Unit also manages the dental clinic at the Queen Elizabeth Hospital, which provides services for hospital inpatients as well as outpatients. Other outreach programs provided or supported by the specialists and staff from the Special Needs Unit include clinics at Modbury GP Plus and Highgate Park, which provide services for intellectually disabled patients in supported residential care and the community (164). The domiciliary service is not currently operated under the Special Needs Unit but provided by the GP Plus Community Clinics in Marion and Elizabeth.

The specialists at the Special Needs Unit also provide ongoing support to clinicians working throughout the South Australian Dental Service through their Special Needs Network. The provision of dental services is also available at Flinders Medical Centre; however, this clinic is not affiliated with the South Australian Dental Service.

3.3.3 Dental services for individuals with special needs in New South Wales, Australia

Sydney and New South Wales are the only city and state in Australia to have two referral centres for individuals with special needs. The Department of Special Care Dentistry at the Westmead Centre for Oral Health is a tertiary referral centre for patients with special needs (165). Located next to Westmead Hospital, this clinic provides services to a wide variety of patients including those with intellectual and physical disabilities, neurodegenerative diseases, complex medical conditions, psychiatric illnesses, and dental anxiety or dental phobia, and through a wide range

multi-disciplinary clinics and treatment modalities including under local anaesthesia, relative analgesia (nitrous oxide sedation), intravenous sedation, or general anaesthesia (165). The department is also involved in the provision of assessments at residential aged care facilities in the Western Sydney Local Health District and oral health education programs for carers and allied health professionals (165). Services are provided by a multi-disciplinary team lead by specialists in special needs dentistry.

In addition to services provided at Westmead Oral Health Centre, services for individuals with special needs are also available at the Sydney Dental Hospital. The Department of Special Care Dentistry offers specialised services to eligible patients with a range of disabilities and complex additional needs but is not currently staffed by any specialists in special needs dentistry. Common patient groups include those with moderate to severe intellectual disabilities, significant physical disabilities, neurodegenerative diseases, multiple complex medical conditions, severe mental health issues, bariatric patients, and those with profound dental phobias (166). The clinic offers a range of sensory tools, specialised equipment, including bariatric chairs and wheelchair platforms, and treatment modalities including the use of local anaesthesia, relative analgesia, and general anaesthesia (166).

Dental services for patients with additional health care needs may be available at a variety of other hospitals across Sydney, including St Vincent’s Hospital and Royal Prince Alfred (RPA) Hospital although limited information is available about these services.

3.3.4 Dental services for individuals with special needs in Queensland, Australia

There is limited information about dental services available for individuals with special needs in Queensland. Specialised facilities are available at the Oral Health Centre,

Hertson in Brisbane where services are provided by specialists in special needs dentistry and training specialists enrolled at the University of Queensland (167). Other services may be available at Royal Brisbane and Women’s Hospital and other teaching hospitals and public sector dental clinics provided by Oral Health Services, Queensland Health (167). Limited services for patients with special needs may also be available through the dental services provided by James Cook University in Cairns and Townsville (168).

3.3.5 Dental services for individuals with special needs in Western Australia

In addition to conventional adult services provided by Dental Health Services, a variety of specialised services are provided for individuals with special needs in Western Australia but primarily located within Perth. The Special Needs Dental Clinic in North Perth is not serviced by specialists but is the main dedicated and purpose-built facility for individuals with special needs in Western Australia (169). The nature of treatment provided available to these individuals depends on the needs of patients and individual programs but may include routine dental examinations, hygiene procedures, fillings, extractions, dentures, and oral health advice (170). These programs include a domiciliary service for individuals unable to attend a dental clinic, an Aged Care Programme for those in residential aged care facilities participating in the scheme, and treatment for disability services commission clients including routine dental examinations, hygiene procedures, fillings, extractions, dentures, and oral health advice.

In addition, dental clinics at Fiona Stanley Hospital and Royal Perth Hospital accept external referrals in addition to providing care for inpatients and outpatients receiving medical treatment at their facilities. However, unlike other major Australian cities that have clinics affiliated with universities with dental training programs, the Oral Health

Centre of Western Australia (OHCWA) does not offer a specialist service for individuals with special needs (171).

3.3.6 Dental services for patients with special needs in Tasmania, Australia

In addition to the conventional services it provides, Oral Health Services Tasmania also operates three referral-based Special Care Dental Units (SCDU). The original Special Care Dental Unit, located at the Royal Hobart Hospital, was established in 2009, and was soon followed by the establishment of a clinic at the North West Regional Hospital (172). A Special Care Dental Unit has more recently opened at the Launceston General Hospital (172).

These clinics were created to “provide medically necessary dental services for people who have a medical condition or are undergoing medical treatment that impacts on their oral health” with the additional precaution of enabling treatment to be provided within a hospital setting (172). The scope of treatments provided at these units has recently been extended to include routine dental treatment for individuals with complex health needs and aimed at stabilising and maintaining oral health in the context of the individuals (172).

Unlike public dental services in other states that require patients to have a valid Health Care Card or Pensioner Card, this service is available to all regardless of financial status. All treatment, excluding the provision of prosthetics, is provided at no cost for patients under the age of 18, for those who have a Health Care Card or Pensioner Concession Card, are an inpatient of the hospital, or are referred from any medical oncology unit. All other patients are required to pay for treatment based on the schedule produced by the Department of Veterans’ Affairs, which is comparable to average private dental sector fees (172).

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3.3.7 Dental services for patients with special needs in the Northern Territory and Australian Capital Territory

There is no information available about dental services for individuals with special needs in the Northern Territory and Australian Capital Territory.

4. Building the specialty of special needs dentistry: training and workforce

4.1 Training specialists in special needs dentistry

From a review of the literature, and information available to the general public, there appears to be limited information available about dental services for individuals with special needs across Australia. In addition, the availability and scope of services varies significantly between states. Although this may in part reflect differences in the approaches of different health services, it may also be the result of the relative youth of the specialty and the limited specialist workforce. In addition to the need for further research into available services and whether they meet the needs of those with special needs, there is a need for continued growth within the specialty of special needs dentistry to allow services to expand and meet the needs of those with special needs in the Australian population.

In conjunction with efforts to establish and define special needs dentistry, consensus grew within the dental profession of the need to develop a suitable workforce to treat the patients identified (18, 173, 174). In many countries, rudimentary workforces existed resulting in the development of professional groups dedicated to special needs dentistry. Several jurisdictions provided existing “specialists” with the opportunity, under transitional arrangements, to apply to be recognised as specialists based on experience that would be considered equivalent to that which may be reasonably

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expected through a specialty training program (175). Furthermore, countries such as the UK and Australia set out to establish requirements for specialist registration and thereby standards for specialty training programs in their respective countries (20, 174, 176, 177). Others, with pre-existing programs sought to adapt them to meet the new requirements.

Various specialist training programs have been established internationally as formal tertiary education programs. In New Zealand, the Doctor of Clinical Dentistry (Special Needs Dentistry) program (formerly Master of Dental Surgery (Hospital Dentistry)) at the University of Otago has been a long-standing program established prior to recognition of special needs dentistry (178). In Brazil, there are estimated to be approximately 11 specialty training programs in special care dentistry and 18 training programs in geriatric dentistry responsible for training specialists (8, 9). Other courses are reported to exist throughout central and South America, in Argentina, Chile, Peru, Mexico, and Venezuela, as well as throughout Europe, with new courses also emerging throughout South-east Asia (179).

In the United Kingdom, 3-year post-graduate programs have been established for the purposes of specialist training. The professional standards for these programs are outlined by General Dental Council but delivered either through a formal Deanery-led Specialist Training Program and university-affiliated Master or Doctorate level degree or through distance learning programs such as the Diploma in Special Care Dentistry offered by the Royal College of Surgeons of England and Edinburgh. Completion of these programs enables registrars to sit the Tri-collegiate Exit Exam, run jointly by the Royal College of Surgeons of Edinburgh, The Royal College of Physicians and Surgeons of Glasgow, and The Royal College of Surgeons of England to gain a Certificate of Completion in Specialist Training (CCST) (180).

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In the United States of America, specialist status is not recognised and thus specialist training programs do not exist. However, in lieu of these programs, the Special Care Dental Association supports fellowship and practice residency programs in Canada and the United States of America to assist in providing practitioners with extra training to assist with the treatment of special needs populations (181). These post-doctoral training programs in general dentistry are accredited by regulatory bodies in their respective countries. It has been reported that 20 one-year, hospital-based programs exist in Canada and approximately 256 programs throughout the United States (182). These residency or internship programs are not specific to special care dentistry but have components pertaining to experience in treating patients with complex needs, use of medical and psychological sedation, and working in the hospital environment (182). Completion of these programs can be credentialed by the American Board of Special Care Dentistry (ABSCD) as a Diploma in Special Care Dentistry (1, 182).

4.2 Special needs dentistry programs in Australia

In Australia, four post-graduate training programs are accredited by the Australian Dental Council and enable a practitioner to register as a specialist in special needs dentistry (183). These include:

• Doctor of Clinical Dentistry (Special Needs Dentistry) at The University of Adelaide, • Doctor of Clinical Dentistry (Special Needs Dentistry) at The University of Melbourne, • Doctor of Clinical Dentistry (Special Needs Dentistry) at The University of Sydney, and • Doctor of Clinical Dentistry (Special Needs Dentistry) at The University of Queensland.

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4.3 Registration requirements for special needs dentists in Australia

In Australia, specialists use the title of “specialist in special needs dentistry” after registering with the Dental Board of Australia (15, 29). The following criteria must be met in order to qualify for specialist registration (184):

• Completed a minimum of two years general dental practice, and • Meet all other requirements for general registration as a dentist, and • Hold an approved qualification for the specialty, or • Hold another qualification which the Board considers to be substantially equivalent (or based on similar competencies) to an approved qualification for the specialty, or • Hold a qualification relevant to the specialty and have successfully completed an examination or assessment required by the Board.

Dental specialists registered in New Zealand can apply for specialist registration under the Trans-Tasman Mutual Recognition Principle (TTMR) (184, 185).

4.4 Workforce in special needs dentistry

Only limited data is available about the specialist workforce in special needs dentistry. Internationally, figures released by the General Dental Council indicated that as of 31 December 2019, 289 special care dentistry specialists were registered in the United Kingdom (186). In New Zealand, as of 30 September 2015, 8 specialists in special needs dentistry were registered with the Dental Council of New Zealand (187). According to the Dental Board of Australia, as of 30 June 2020, there were 20 registered specialists in special needs dentistry in Australia (188). This number is expected to increase to 24 in 2021. The primary place of practice of these specialists is presented in Table 17 (188).

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Table 17. Specialists in special needs dentistry by state/territory of principle practice, 2020 (188)

State/Territory Number of registered specialists Australian Capital Territory 0 New South Wales 3 Northern Territory 0 South Australia 5 Queensland 3 Tasmania 0 Victoria 7 Western Australia 1 Not specified 1

The available figures demonstrate the limited specialist workforce in special needs dentistry in Australia, particularly when compared with other parts of the world. In addition, with the recognition of the specialty, although these numbers remain low, the total number of registered specialists has, in fact, grown significantly. Although this may raise concerns about the workforce available to manage individuals with special needs, it must be noted that there is no available data regarding other oral health professionals working in the field of special needs dentistry who may supplement the specialist workforce or the number of clinicians in general practice willing and able to treat these patients. To appreciate the need for specialist services requires further investigation into the nature of referrals to specialists and specialist clinics in Australia.

5. Dental service utilisation and individuals with special needs

5.1 Regularity of dental visits by individuals with special needs in Australia

There have only been a limited number of studies in Australia examining the utilisation of dental services by individuals with special needs, and almost solely limited to those on the autism spectrum and/or with physical and/or intellectual disabilities.

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In a relatively recent study, regularity of dental attendance amongst Australians with disabilities was examined by Lopez Silva and co-authors (189). Defining irregular attendance relatively liberally as two or more years since their last dental visit, they used data from the Household, Income, and Labour Dynamics in Australia (HILDA), a longitudinal and nationally-representative study of Australian households. Irregular dental attendance was found to be 1.2 times greater for those with disability, compared with those without disabilities (189). Of concern, the odds of irregular dental attendance were higher, at 1.41 times, for those in the 15-24 years age group (189).

In contrast, Scott and colleagues investigated the oral health of 101 adults with developmental disabilities in the North Shore area of Sydney and found utilisation of dental services was higher than the general population with 65% of their sample having visited a dentist in the last 12 months (190). Utilisation of dental services in this sample was primarily in the public sector (190). Interestingly, despite this and the fact that only 42% of participants felt they needed dental treatment, approximately 90% of their sample were deemed to require some form of dental treatment from oral examinations (190).

Pradhan and colleagues investigated a similar population but in South Australia using a mailed questionnaire to carers to adults aged 18 to 44 years with a diagnosis of autism, brain injury, cerebral palsy, intellectual disability, spina bifida, and/or quadriplegia (191). Based on their sample of 485 participants, 18.6% were deemed irregular dental attenders, which was defined as never visiting the dentist, only visiting for a dental problem, or over two years between dental visits (191). Although there was not a clear distinct age difference as found by Lopez Silva and colleagues, there was a tendency towards irregular dental attendance amongst younger adults (25-34 years of age) (Table 18) (189, 191).

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Table 18. Frequency of irregular dental attendance amongst adults with special needs in South Australia (191)

% 95% confidence intervals P-value Age 18-24 20.4 14.0 - 26.8 0.001 25-34 26.0 19.0 - 33.0 35-44 9.9 5.1 - 14.6 Gender Male 19.4 14.9 - 24.0 0.566 Female 17.3 11.8 - 22.9 Disability Autism 26.5 19.4 - 33.7 0.006 Physical 18.6 12.1 - 25.0 Intellectual 12.6 7.8 - 17.5

In addition, those living with family were more likely to be irregular attenders with a large proportion (61.6%) of those in institutions visiting the dentist every 6 months (Table 19) (191). Interestingly, despite higher dental attendance amongst those living in institutions, these individuals were found to have a higher DMFT index (192).

Table 19. Frequency of dental visiting patterns by residential setting amongst adults with special needs in South Australia (191)

Pattern of dental All (%) Family (%) Community Institution (%) Chi-square P visits (%) value Irregular 18.6 30.4 9.6 5.1 <0.001 Every 2 years 7.7 12.1 5.5 1.0 Every year 32.8 24.1 46.5 32.3 Every 6 months 40.9 33.5 38.4 61.6

5.2 Referrals to specialist services in special needs dentistry in Australia

Much like research into dental attendance patterns of individuals with special needs, there has been limited research into the types of patients that require or have been referred for specialist care. To date, the authors are aware of only one study that has attempted to review referrals to special needs dentistry clinics in Australia. This study

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was an audit of all referrals to the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne between January 1 and June 30, 2013 (193). During this 6-month study period, 688 patient referrals were received and reviewed during this 6- month study period (193).

A number of key features were evident in this study. Firstly, females were more likely to be referred to the unit, patients had a mean age of 52.7 (range 15 to 108 years), and the majority (91.1%) resided in metropolitan Melbourne (193). Over 99% of referrals were for individuals with pensioner concession cards. Interestingly, more than half of the patients referred were not able to self-consent for treatment (55.1%) (193).

Most referrals to the unit were from medical practitioners with dental practitioners being the second largest group (193). Requests for treatment to be undertaken within the Integrated Special Needs Department were the predominant reason for referral. The most common reasons for referral were medical conditions (81.7%), psychological problems (46%), physical disabilities (34.2%), intellectual disabilities (26%), and behavioural problems (14%) (193).

5.3 Barriers to accessing dental care experienced by individuals with special needs in Australia

Studies regarding the barriers to accessing dental care by individuals with special needs in Australia remain limited despite conflicting results about the utilisation of dental services by these populations. Pradhan and colleagues attempted to assess such barriers through a cross-sectional study of carers of 18- to 44-year-old adults with intellectual and physical disabilities in South Australia (191, 194). At total of 485 carers responded to the mailed questionnaire regarding care recipients who had a variety of

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diagnoses including intellectual disabilities (38.5%), autism spectrum disorder (31.7%), and cerebral palsy (19.5%) (191, 192, 194).

The responses of carers in relation to problems with accessing dental care are presented in Table 20 (191). Although individuals with disabilities across all residential settings experienced multiple barriers, the most common barrier was the lack of oral health professionals with adequate skills and willing to treat those with disabilities (191). Cost of treatment and difficulties with travelling to clinics for treatment were also common barriers (191).

Table 20. Problems by carers regarding access to dental care for individuals with disabilities (191)

Problems All Family Community Institution Chi-square p (%) (%) (%) (%) vale Lack of dentists with adequate 19.7 25.8 21.4 4.0 <0.001 skills Cost of treatment 15.3 24.9 10.0 2.0 <0.001 Inconvenient location of clinic 14.7 18.9 17.3 2.0 <0.001 Lack of dentists willing to treat 13.9 18.8 12.9 5.1 0.004 Transport difficulty 12.8 18.8 10.7 3.0 <0.001 Other 7.8 9.9 9.4 1.0 0.017 One or more 43.6 57.3 47.9 8.1 <0.001

The finding regarding lack of training or willingness amongst oral health professionals to manage those with special needs reflects other workforce-related studies conducted in Australia. A study by Derbi and colleagues of the perceptions of general dentists towards treating patients with special needs in Western Australia found only one third of respondents recalled having a special needs dentistry component as part of their training and that about the same proportion (33.3%) felt “incompetent” in managing individuals with special needs (195). This was despite 60.7% of participants stating that they provided treatment to these patients (195).

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Of the 40% of dentists who did not treat patients with special needs, 55.7% reported that this was due to a lack of experience (195). Other barriers reported by dentists included difficulties with behaviour management (46.8%), inadequate staffing (41.8%), and lack of appropriate facilities (46.8%) (195). Of the participants, 29.1% responded that they had no interest in treating individuals with special needs and 26.6% reported that they were reluctant to do so because treating these patients was more time consuming (195).

The groups of patients that dentists felt least comfortable managing were those with complex medical issues (36.6%) and intellectual disabilities (32.6%) (195). However, those that dentists were most likely to refer were individuals with psychological problems which prevented them from accepting conventional treatment, and those with intellectual or behavioural problems that made treatment more complex (195).

The results of that study were consistent with those reported by Yap and colleagues regarding patients with special needs requiring endodontic treatment (196). Amongst general dentists in this study, the most common reasons reported for not completing root canal treatment in this population were limited cooperation from the patient (64.4%) and uncontrolled movements (51.5%) (196). As a result, specialists in special needs dentistry and endodontists were significantly more likely to perform endodontic treatment on patients with intellectual disability (p = 0.001), medical problems (p < 0.001), psychiatric issues (p = 0.006), and behavioural issues (p < 0.001) than general dentists (196).

In addition to finding barriers associated with the dental workforce, cost of treatment, and travel to dental clinics, Pradhan and colleagues also suggested that a lack of understanding about dental problems amongst carers could be a barrier to access of dental care for those with disabilities (194). Despite reporting a relatively low 110

perceived prevalence of impacts on quality of life from dental problems amongst those they cared for (diet 3.0%, sleep 6.1%, behaviour 7.7%, pain and discomfort 9.2%), about 26.5% of carers reported that they did not know whether those they cared for actually had a dental problem (194). In the groups of those that were able to communicate verbally, the negative impacts on quality of life were found to be consistently greater than that reported by their carers particularly within younger age groups. This suggested that carers had limited understanding of the dental problems or the impacts these may have on the quality of life of those for whom they provided care. Similar findings, regarding the lack of training and understanding of carers, but in the aged care sector and in relation to provision of daily oral hygiene for residents, have been reported in the literature (197).

The limited number of studies regarding access to care and utilisation of dental services amongst special needs populations raise some concerns regarding possible barriers to care for individuals with special needs. In addition to conventional barriers, such as cost of treatment and location of services, this appears to be compounded in this population by transportation issues and a poor oral health literacy amongst their carers. Of significant concern is the possible influence that a lack of training amongst oral health professionals may have on the ability of these individuals to access timely and appropriate care. These initial findings highlight the need for further research into utilisation of dental services, the profile of patients requiring specialist care, and barriers that may impact on the oral health of these populations.

6. Concluding remarks and future directions

This review examined the literature relevant to special needs dentistry and the types of patients treated by this specialty in Australia. The definition of the specialty, as recognised by the profession in this country, is provided and compared with those used around the world. In addition, the subgroups of patients treated are examined

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with available international and Australian data presented to provide a picture of their relative prevalence in the population. An overview of the Australian health care system and funding, as well as that pertaining to available services, education, and workforce in special needs dentistry, and the utilisation of services by individuals with special needs in Australia is reviewed.

However, in reviewing this information several questions arise. Despite clear definitions to define special needs dentistry, no published data is available regarding the types of patients treated at specialty dental units other than limited referral information. The lack of detailed information regarding the nature and severity of medical conditions or disabilities of patients being referred for specialist care and thus what level of complexity necessitates specialist-level care over that provided by general dentists highlights a key need for the specialty, now a decade since its recognition, to consider how its scope reflects the needs of patients and the perceptions of the wider dental community. After all, from the data presented, it is evident that the existing specialist workforce is not able to manage all patients with special needs in the Australian population, nor was this ever the intention when the specialty was recognised.

In light of this, a secondary concern that emerges is whether individuals with special needs are able to access the dental care they require or desire. The literature raises a number of potential barriers that may prevent them from accessing dental care, one of which is the adequacy of the dental workforce to meet the current and future needs of this growing population. This is an area of growing concern given the reported level of education and experience in special needs dentistry of general dentists and how this continues to impact on access to dental care for these populations despite the existence of special needs dentistry as a specialty area. It presents a significant challenge for the maturing of special needs dentistry in terms of its relevance and profile as a specialty, but also in relation to the nature and availability of dental 112

services, particularly in the public sector where the vast majority of these patients are likely to access their care.

This study aims to address a number of these issues by beginning to establish a greater understanding of the nature of specialist dental services for patients with special needs and a profile of the patients that oral health professionals feel require specialist level care. In addition, these results may offer opportunities for comparison of specialist services to understand the challenges faced in their provision. It is anticipated that a lack of willingness amongst oral health professionals to treat patients with special needs will be a prominent concern amongst specialists. As a result, avenues to provide greater support for oral health professionals will be explored, within the context and constraints of current public sector dental services, in order to begin to address inequalities in the oral health and access to care experienced by individuals with special needs in Australia.

7. References

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157. Dental Health Services Victoria. The Royal Dental Hospital of Melbourne [cited 20 January 2021]. Available from: https://www.dhsv.org.au/clinic-locations/the- royal-dental-hospital-of-melbourne. 158. Dental Health Services Victoria. Integrated Special Needs [cited 20 January 2021]. Available from: https://www.dhsv.org.au/public-dental- services/referrals/integrated-special-needs. 159. Dental Health Services Victoria. Specialist dental care: Dental Health Services Victoria Victoria, Australia: Dental Health Services Victoria; 2015 [cited 8 November 2015]. Available from: https://www.dhsv.org.au/public-dental- services/specialist-dental-care. 160. Peter MacCallum Cancer Centre. Dental Oncology [Cited 20 January 2021] Available from: https://www.petermac.org/services/treatment/dental-oncology. 161. Alfred Health. Dental Clinic [Cited 20 January 2021]. Available from: https://www.alfredhealth.org.au/services/dental-clinic. 162. Monash Health. Dental (Specialist Clinic, Clayton) [cited 20 January 2021]. Available from: https://monashhealth.org/health-professionals/referrals/dental- specialist-clinic/. 163. South Australian Dental Service. Welcome to the South Australian Dental Service. South Australia: Department of Health and Ageing, Government of South Australia; 2014. 164. SA Health. About Adelaide Dental Hospital [cited 20 January 2021]. Available from: https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+i nternet/services/dental+diagnostic+and+pharmacy+services/dental+services/ad elaide+dental+hospital/about+adelaide+dental+hospital. 165. Western Sydney Local Health District. Special Care Dentistry: WSLHD NSW Australia: NSW Government Health; 2015 [cited 8 November 2015]. Available from: http://www.wslhd.health.nsw.gov.au/Westmead-Centre-for-Oral- Health/Departments-and-Clinics/Special-Care-Dentistry. 166. Sydney Local Health District. Special Care Dentistry [cited 8 November 2015]. Available from: https://www.slhd.nsw.gov.au/oralhealth/services_specCare.html. 167. The University of Queensland. Special Needs Dentistry Field of Study [cited 20 January 2021]. Available from: https://my.uq.edu.au/programs- courses/plan.html?acad_plan=SNDENX5616. 168. JCU Dental. Treatments in Cairns and Townsville [cited 20 January 2021]. Available from: https://www.jcudental.com/treatments. 169. Ability Centre. Future Thinking: Dental Care 2020 [cited 20 January 2021]. Available from: https://futurethinking.abilitycentre.com.au/people-with- physical-disabilities/looking-after-me-overview/dental-care. 170. Government of Western Australia. Special services [cited 20 Janury 2021]. Available from: https://www.dental.wa.gov.au/dental-services/special-services. 171. The University of Western Australia. The Oral Health Centre of Western Australia [cited 20 January 2021]. Available from: https://www.uwa.edu.au/facilities/ohcwa.

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172. Department of Health and Human Services. Special Care Dental Services Hobart Tasmania, Australia: Tasmanian Government Department of Health and Human Services; 2015 [cited 8 November 2015]. Available from: http://www.dhhs.tas.gov.au/oralhealth/welcome_to_oral_health/special_care_ dental_services. 173. Nunn J. Editorial - Working Together. Journal of Disability and Oral Health. 2001;2(1):2. 174. Fiske J. Special care dentistry. British Dental Journal. 2006;200(2):61. 175. General Dental Council. Mediation criteria for specialist list in special care dentistry. 2008. [cited 22 January 2021]. Available from: https://www.bsdh.org/documents/Mediation_criteria.pdf 176. International Association for Disability & Oral Health. Special Care Dentistry Postgraduate Curriculum Guidance. International Association for Disability and Oral Health; 2014. [cited 22 January 2021]. Available from: https://iadh.org/wp- content/uploads/2014/10/iADH-post-graduate-curriculum-2014.pdf 177. Specialist Advisory Committee in Special Care Dentistry. Specialist Training Curriculum. London UK: The Royal College of Surgeons of England, The Faculty of Dentistry; 2007. [cited 22 January 2021]. Available from: https://www.rcseng.ac.uk/careers-in-surgery/trainees/st3-and-beyond/surgical- training-curriculum/ 178. Dental Council of New Zealand. Prescribed qualifications for dental specialists 2014 [cited 15 July 2015]. Available from: http://www.dcnz.org.nz/i-want-to- practise-in-new-zealand/dentists-and-dental-specialists/prescribed- qualifications-for-dental-specialists/. 179. Thompson S, Perry M, Wilson K, Scagnet G, Borromeo GL, Marks L, editors. Continuing Post-Doc Dental Education and Accredited Training in SCD: Global Perspectives. 23rd iADH Congress -Reframing Special Care: A Global Perspective; 2016. Special Care Dentistry Association. 180. General Dental Council. GDC Specialist lists: General Dental Council; [cited 20 January 2021]. Available from: https://www.gdc-uk.org/registration/your- registration/specialist-lists. 181. Special Care Dentistry Association. Education & Courses -Special Care Dental Association; 2015 [cited 2015 15 July]. Available from: http://www.scdaonline.org/?page=Education_Courses. 182. Epstein JB, Tejani A, Glassman P. Assessment of objectives of post-doctoral general dentistry programs in Canada. Special Care in Dentistry. 2000;20(5):191- 4. 183. Australian Dental Council. Accredited dental practitioner programs Melbourne, Australia: Australian Dental Council; [cited 20 January 2021]. Available from: https://www.adc.org.au/index.php/Program-Accreditation/Program-List. 184. Dental Board of Australia. Specialist registration standard. 2010. 185. Trans-Tasman Mutual Recognition Act 1997, (Commonwealth of Australia). [cited 22 January 2021]. Available from: https://www.legislation.gov.au/Details/C2015C00470 186. General Dental Council. GDC Registation Statistical Report 2019. 2020.

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187. Dental Council of New Zealand. Dental Council Workforce Analysis 2013-2015. 2017. 188. Dental Board of Australia. Dental Board of Australia Registrant data. Reporting period: 01 April 2020 to 30 June 2020 [cited 20 January 2021]. Available from: https://www.dentalboard.gov.au/About-the-Board/Statistics.aspx. 189. Lopez Silva CP, Singh A, Calache H, Derbi HA, Borromeo GL. Association between disability status and dental attendance in Australia-A population-based study. Community Dentistry and Oral Epidemiology. 2021;49(1):33-39. 190. Scott A, March L, Stokes ML. A survey of oral health in a population of adults with developmental disabilities: comparison with a national oral health survey of the general population. Australian Dental Journal. 1998;43(4):257-61. 191. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 192. Pradhan A, Slade GD, Spencer AJ. Factors influencing caries experience among adults with physical and intellectual disabilities. Community Dentistry and Oral Epidemiology. 2009;37(2):143-54. 193. Rohani M, Calache H, Borromeo M. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia. Australian Dental Journal. 2017;62(2):173-9. 194. Pradhan A. Oral health impact on quality of life among adults with disabilities: carer perceptions. Australian Dental Journal. 2013;58(4):526-30. 195. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 196. Yap E, Parashos P, Borromeo G. Root canal treatment and special needs patients. International Endodontic Journal. 2015;48(4):351-61. 197. Chalmers JM, Levy SM, Buckwalter KC, Ettinger RL, Kambhu PP. Factors influencing nurses' aides' provision of oral care for nursing facility residents. Special Care in Dentistry. 1996;16(2):71-9.

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Chapter 2. Profile of patients referred to and treated at specialised clinics for individuals with special needs

Introduction:

In recognition of the growing number of individuals with special needs and pressure to ensure equitable access to health care, many public dental services established clinics dedicated to addressing the needs of individuals in these populations. In some states, like Victoria and South Australia, with existing services in this area and newly- recognised specialists upon the establishment of a new clinical specialty in special needs dentistry, referral centres for these patients emerged. In other states, like Tasmania, specialised clinics were established despite the lack of a specialist workforce in special needs dentistry. Such was the appreciation of the additional needs of these individuals and the impact these needs may have on their oral health or the manner in which they received treatment.

Over the last decade, these specialised services have grown and adapted to the needs of their patient populations, but little is known about the types of patient that are referred to or access care through these clinics. This chapter includes a collection of manuscripts that begin to provide an answer to this question.

These manuscripts describe the patients referred to and treated at dedicated clinics for individuals with special needs across three states in south-eastern Australia: the Special Care Dental Units in Tasmania, the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne in Victoria, and the Special Needs Unit at the Adelaide Dental Hospital in South Australia.

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The Special Care Dental Units in Tasmania are hospital-based units operated out of the Royal Hobart Hospital in Hobart and North-West Regional Hospital in Burnie by Oral Health Services Tasmania. Since the completion of data collection, a new clinic has also opened at the Launceston General Hospital. However, unlike similar clinics around Australia, the lack of specialists in special needs dentistry within the state means that all patient care is provided by oral health professionals with no additional qualifications in special needs dentistry.

In contrast, the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne and the Special Needs Unit at the Adelaide Dental Hospital are two of Australia’s most well-established and recognised specialist centres. Both are the only tertiary referral centres for the management of individuals with special needs within the respective public dental systems that service their states and operate with multi- disciplinary teams but with slightly different models of care. In addition to describing the services provided by these units, this chapter also includes manuscripts that describe the patients and treatments provided by these specialist services under general anaesthesia and through domiciliary services.

The results provide an overview of the services available to patients with special needs. In addition, the results develop an initial profile of the types of patients that are referred to, and treated at, specialist services providing an indication of the nature of individuals that oral health professionals may consider to require special management by specialists or at clinics dedicated specifically to addressing their needs.

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Patient referrals to special needs dental units in Tasmania, Australia

Authors: Mathew AWT Lim and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim and Mina Borromeo

Article status: Published by Journal of Disability and Oral Health, 2017

Lim MAWT, Borromeo GL. Patient referrals to special needs dental units in Tasmania, Australia. Journal of Disability and Oral Health 2017; 18(3): 87- 94

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Patient referrals to special needs dental units in Tasmania, Australia

Abstract

Even though Special Needs Dentistry has now been recognised as a dental specialty in Australia for more than a decade little is known about the nature of referrals to units dedicated to treating patients with special needs.

Aims and Objectives: To determine the types of patients referred to special needs dental units staffed by general dentists and the reason(s) for these referrals.

Methodology: Referrals for all patient appointments at Special Care Dental Units in the state of Tasmania during August 2015 were reviewed.

Results: Most referrals were from medical practitioners for the management of oral implications of medical conditions or medications. Hospital referrals originated mainly from oncology and geriatric evaluation and management units. Patients had an average of 3 medical conditions. Referrals relating to medications were generally related to the use of Bisphosphonates and Denosumab, and for chemotherapy patients.

Conclusions: This study provides details of the types of patients referred to special needs dental units. In particular, it provides insight into the awareness of the oral implications of medical conditions and medications on oral health and dental treatments amongst the medical profession and thus the importance of interactions between oral health professionals and other health professionals. Furthermore, the data stimulates discussion about the potential influence of clinic location and workforce on patient referrals.

Introduction

Special needs dentistry (SND), or Special care dentistry, was recognised as a registrable dental specialty in Australia in 2003 and is defined as “the branch of dentistry that is 130

concerned with the oral health care of people with intellectual disability, medical, physical or psychiatric conditions that require special methods or techniques to prevent or treat oral health problems or where such conditions necessitate special dental treatment plans” (1). In doing so, the profession recognised the impact of these conditions on oral health, anticipated dental treatment, or modifications to care provision.

As a result, many of Australia’s public dental services developed specialised units dedicated to the management of these patients, usually affiliated with major general hospitals or dental hospitals. Oral Health Services Tasmania is one such service that operates two referral-based Special Care Dental Units (SCDU) at the Royal Hobart Hospital and North West Regional Hospital to provide dental services for people who “have a medical condition or are undergoing medical treatment that impacts on their oral health” (2). Patients are accepted on referral from both oral and medical health professionals. Services include treatment of outpatients at hospital-based clinics and general anaesthetic services at day surgery units at both the Royal Hobart and Mersey Hospitals. Unlike similar dental services in other states, patients do not need to have a valid health care card or pensioner concession card to receive treatment at these facilities (2). Additionally, due to the lack of specialists in Tasmania, these units are staffed by general dentists with an interest in treating patients with special needs.

To date, limited information is available regarding the types of patients that are referred to and treated at special needs dental clinics both nationally and internationally and thus what constitutes this specialist level of care. This study aims to provide preliminary data on the types of patients referred to specialised units in Tasmania including the source and reason for their referral.

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Material and Methods

The records of all appointments at public hospital special needs dentistry clinics in the state of Tasmania, Australia between 1 August, 2015 and 30 August, 2015 were reviewed. Centres included in the study were Royal Hobart Hospital Special Care Dental Unit and Royal Hobart Hospital Day Surgery Unit in Hobart, North West Regional Hospital Special Care Dental Unit in Burnie, and Mersey Hospital Day Surgery Unit in Latrobe.

A retrospective review of the records of patients with appointments during the study period was conducted by a single investigator who recorded details of patient demographics (gender, date of birth, residential postcode), consent status, health care card and pensioner concession card status, source of referral, reason for referral, and medical history, including medical conditions and current medications. Patients with no referral were excluded from the analysis.

Data were recorded on an Excel spreadsheet (Microsoft Corporation, Seattle WA, USA) using a researcher-developed standardised data collection sheet. Medical conditions and medications were recorded using the World Health Organization International Classification of Disease 10 (ICD-10) and the Anatomical Therapeutic Chemical and Defined Daily Dose (ATC/DDD) classifications (3, 4). Residential postcode was grouped using the Australian Statistical Geography Standard (ASGS) Remoteness Areas Classification 2011 (5). SPSS Statistics Version 23 (IBM Inc, Armonk NY, USA) was used for descriptive analysis of the data.

Ethics approval was obtained from the University of Melbourne Human Research Ethics Committee (Ethics ID 1544156) and the Tasmania Medical Human Research Ethics Committee (Ref No. H0015272).

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Results

In total, 181 patient appointments were reviewed during the study period. 67 patients (37%) had no referral and were therefore excluded from further analysis. Of the patients with no referral, 16 had been previously treated at one of the units with 5 patients having had an appointment more than a year prior. When the medical histories of these patient were reviewed, 18 (27.3%) had multiple medical comorbidities and 27 (40.9%) had a complex medical condition which would justify treatment being completed at a specialised hospital-based unit. However, the remaining 31.8% had no medical history noted in their records.

The majority of appointments (78.95%) were at the Royal Hobart Hospital. 16 patients (14.0%) were treated at the North West Regional Hospital and 8 (7.0%) at the Mersey Hospital Day Surgery Unit (Table 1). Twenty-one appointments (18.4%) represented patients who were newly referred to the unit in August 2015. Just under one third of the appointments (32.5%) were for patients who have been treated at the unit for more than 12 months.

Table 1. Appointments and valid referrals by location of the Special Care Dental Unit.

Location Appointments Valid referrals Royal Hobart Hospital 113 (62.4%) 90 (78.9%) North-West Regional Hospital 60 (33.1%) 16 (14.0%) Mersey Hospital 8 (4.4%) 8 (7.0%) All locations 181 114

Of the 114 patients with referrals, 56.1% were male with the age of patients ranging from 18 to 91 years (mean age 55.75 years) at the time of their appointment (Table 2). The majority of patients (87.7%) met eligibility criteria for public dental care at Oral Health Services Tasmania. Likewise, the majority of patients (93.9%) were able to self- 133

consent for dental treatment and were from inner regional suburbs based on the Australian Statistical Geography Standard (ASGS) Remoteness Areas Classification 2011 (5).

Table 2. Patient demographics for referrals to Special Care Dental Units in Tasmania across all dental services.

Referrals N (%) Gender Male 64 (56.1) A Age <25 years 5 (4.4) 23-34 years 16 (14.0) 35-44 years 11 (9.6) 45-54 years 18 (15.8) 55-64 years 21 (18.4) 65-74 years 24 (21.1) 75+ years 19 (16.7) Eligibility Eligibility for public dental care 100 (87.7) Consent Ability to self-consent 107 (93.9) Remoteness of Inner regional 87 (76.3) residence B Outer regional/remote 27 (23.7) Referral source General dental practitioner 30 (26.3) Medical practitioner 84 (73.7) Type of medical General medical practitioner 13 (11.4) professional or unit Cardiology 7 (6.1) Diabetes clinic 5 (4.4) Accident and emergency 1 (0.9) Endocrinology 1 (0.9) Gastroenterology 1 (0.9) Geriatric medicine 16 (14.0) Haematology 2 (1.8) Infectious diseases 2 (1.8) Oral and Maxillofacial Surgery 7 (6.1) Oncology 20 (17.5) Parkinson’s Disease clinic 1 (0.9) Psychiatric medicine 1 (0.9) Renal 4 (3.5) Respiratory 2 (1.8) Sexual health 1 (0.9) TOTAL 114 AAge categories were based on those used by the World Health Organization (6) BAustralian Statistical Geography Standard (ASGS) Remoteness Areas Classification 2011 (5)

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Only one patient was referred for a second opinion with the remainder referred for management of dental problems (Table 3). The majority of patients (87.8%) were referred because of a medical condition or medication perceived likely to affect their dental treatment with the majority of these referrals coming from medical and allied health professionals. Other reasons for referral included behavioural problems and intellectual disability (4.4%), psychological problems, including anxiety and phobias (3.5%), or physical impairment (2.6%).

Table 3. Referrals to Special Care Dental Units according to primary reason for referral.

Reason of referral Medical Dental All sources (%) Second opinion 1 0 1 (0.9) Behavioural/intellectual disability 1 4 5 (4.4) Psychological problem 1 3 4 (3.5) Physical impairment 2 1 3 (2.6) Medical condition 60 16 76 (66.7) Medication 19 6 25 (21.9) Total 84 30 114

The majority (73.7%) of referrals came from medical professionals and mainly from specialty departments within the Royal Hobart Hospital (Table 2). Oncology referrals accounted for 17.5% of appointments, although the medical histories of patients revealed 31.6% of patients had a history of a malignant neoplasm. One quarter (25%) of these patients had a head and neck cancer. Patients referred and treated at these units had an average of 3.07 medical conditions with other common conditions including a history of diseases involving the circulatory system (42.1%), endocrine, nutritional, and metabolic disorders (31.6%), and diseases of the musculoskeletal system (31.6%). A quarter (25%) of patients referred from the Geriatric Evaluation and Management (GEM) Unit were for assessment and treatment of stroke patients.

However, the most common reason for a referral from medical professionals working in GEM was a history of osteoporosis or an osteoporotic fracture requiring oral 135

assessment prior to the commencement of anti-resorptive therapy (43.8%). Concerns regarding the oral implications of anti-resorptive drugs, such as bisphosphonates or Denosumab, on dental treatment were also the main reason for referrals from dentists that were related to medications. In addition to these medications, other common therapies cited in referrals were novel oral anticoagulant (NOAC) drugs or impending chemotherapy for oncologic reasons (Table 4).

Table 4. Referrals to Special Care Dental Unit for management of oral implications of medications grouped by medical condition.

Medications Referral source Medical (n=19) Dental (n=6) Total (n=25) Osteoporosis Pre-assessment 8 1 9 Bisphosphonates 0 2 2 Denosumab 2 1 3 Multiple myeloma, bone malignancies and other bone conditions Pre-assessment 1 1 2 Bisphosphonates 1 0 1 Denosumab 2 0 2 Other Chemotherapy 5 0 5 Anticoagulants/NOAC 0 1 1

Discussion

Oral Health Services Tasmania established its Special Care Dental Units in 2009 with the view to being able to provide an improved experience of dental care for those with medical conditions that may affect their oral health or the way in which they received treatment (2). Units were established as referral-based clinics associated with major hospitals in the north-west and south of the state and staffed by general dentists employed within the public sector (2). In addition, pre-existing relationships with day surgery units at various hospitals enabled procedures under general anaesthesia to be offered to patients if necessary.

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These clinics have several unique characteristics when compared to special needs dental clinics in other areas of Australia. Firstly, despite the clinic being operated by the state’s public dental sector, patients do not need to meet eligibility criteria for public dental treatment at these clinics; that is to say regardless of socioeconomic status (2). All treatment, excluding the fabrication of prosthetics, is provided at no cost to patients under 18 years of age, for those who have a government-issued health care card or pensioner concession card, are an inpatient of the hospital, or are referred from a medical oncology unit. All other patients are required to pay for treatment based on the fee-for-service schedule produced by the Department of Veterans’ Affairs (2, 7).

Patients are accepted for treatment on referral from either oral health practitioners or medical professionals. Referrals are usually directly from hospital departments, health professionals in the private sector, or dental officers working within the public service and are screened by the Senior Dental Officer in each region. Although these units are located within hospital facilities, they are operated as units external to the hospital itself and under the organisational structure of the state public dental service, Oral Health Services Tasmania.

In addition, the unit is not staffed by registered SND specialists but by experienced dentists with an interest in providing care to patients with special needs. This reflects the limited numbers of SND specialists in Australia with most working in major capital cities that have large SND referral centres (8). Furthermore, the establishment of a unit at the North West Regional Hospital represents the only unit dedicated to the care of patients with special needs in rural or regional Australia.

Definitions of Special Needs Dentistry in Australia have focussed on groups of patients who may have conditions or impairments that either directly affect their oral health or 137

the manner in which they receive dental treatment (1). These conditions may involve medical, psychological, physical, or intellectual impairments (9). Although it has been a recognised dental specialty since 2003, there is little information regarding what conditions and level of impairment necessitate specialist treatment (1). As a result, this study represents some of the first published data on referrals to special needs dental clinics in Australia.

All appointments at Special Care Dental Units in the state of Tasmania for the month of August 2015 were reviewed and those with a referral letter identified and included in the analysis. Rather than review referrals received by the unit, it was decided to retrospectively examine details of referrals associated with the patient’s appointment or course of care. In doing so this methodology allowed analysis of referrals based on attendance or appointments at clinics. This was to enable future comparison of these results to an audit of referrals received which would thereby assist in identifying subpopulations that may be unable to access care due to various barriers thus enabling initiatives to be developed to improve access for these groups.

Despite this intention, one limitation of this study was the relatively high number of appointments for which referrals could not be identified. This represented 37% of the appointments with the majority (65.1%) of those missing associated with patients at the North West Regional Hospital. In addition to clerical errors resulting in referrals not being scanned to the patient’s electronic record, other possible explanations for the absence of referrals in these cases were that the patient was receiving ongoing or long-term review at the unit resulting in no referral being associated with that course of care, or that an urgent internal referral within the dental service enabled an appointment to be made for the patient with normal referral documentation not being completed. Furthermore, with specific reference to the high number of missing referrals at the North West Regional Hospital, this may have resulted from patients being triaged and appointed to the hospital-based clinic because of the perception that 138

medical support may be required for management of the dental problem, such as a patient with a significant facial swelling.

Problems associated with missing referrals or the quality of the referral was not unique to our study and has been discussed in the literature. Previous studies of referrals to specialty dental units have reported approximately 41.2% of referrals to have missing medical information with an average of 1.31 relevant items per referral (10). There is limited information from the data available to account for the absence of referrals particularly for almost one third of these patients who appeared to have no medical details to justify treatment at these units. A review of these patient appointments would be recommended to ensure appropriate referral to these units and ensure improvements in accuracy of medical records. Likewise, the standardisation of referral pathways and medical forms to be used by referring practitioners may increase consistency and prevent the omission of relevant information.

The available data regarding referrals indicated that more than three-quarters of these were to the Royal Hobart Hospital. This is likely due to the relative number of appointments available at the unit and population distribution in the state of Tasmania (11). In addition, the Hobart unit is associated with the Royal Hobart Hospital which is the state’s largest hospital and major referral centre (12). Furthermore, the majority of referrals received were from medical professionals and largely from other hospital departments for the management of oral implications of medical conditions or medications. This was also reflected in those from other dental professionals and was consistent with the limited literature regarding referrals to other special needs dental units in Australia (13).

A smaller proportion of patients were referred for other reasons consistent with the accepted definition of Special Needs Dentistry in Australasia. These individuals with 139

behavioural problems, intellectual impairments, or psychological conditions, such as anxieties or phobias, largely had appointments for treatment under general anaesthesia. The larger proportions of patients referred for management of oral implications associated with medical conditions or medications was reflective of the intended scope of these hospital-based clinics. It is also likely that these referral patterns were influenced by the location of clinics within hospital facilities themselves (14). This physical presence and the increased interaction between oral health and medical and allied health professionals is likely to have increased awareness of the availability of services as well as the potential interactions between medical conditions and related interventions and dental treatment, oral health, and manifestations in the oral cavity.

As a result, this study provides an interesting perspective on the awareness of Special Needs Dentistry amongst the medical profession and, in particular, the role other health professionals feel dentists may play in the management of patients with complex medical problems. The most common referral source amongst medical professionals was the oncology department that was also reflected by the significant proportion of cancer-related diagnoses in the medical histories. Aside from the fact that cancers can affect the head and neck region, surgical, chemotherapy, and radiotherapy treatment regimens can all have impacts on oral health and dental treatment. Some of the most common side effects of chemotherapy and radiation to the head and neck region are oral mucositis and reduced salivary flow, which are associated with opportunistic oral infections and an increased risk of dental caries (15, 16). In addition, extractions completed after irradiation of the jaws can result in an increased risk of developing osteoradionecrosis (17). As a result, patients are often recommended to be reviewed by a dentist prior to commencing any cancer therapy. The high numbers of referrals from hospital oncology units in this sample reflect that the involvement of a dentist in the multidisciplinary management of cancer patients is considered a priority within this medical specialty.

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Amongst the referrals for concerns regarding medications, a large proportion were associated with osteoporosis, or other conditions resulting in low bone mineral density, and current or planned treatment. Bisphosphonates and the monoclonal antibody Denosumab are often used in the management of osteoporosis, multiple myeloma, and bone malignancies. These medications are of concern to dentists because of the associated risks of developing medication-related osteonecrosis of the jaw (MRONJ) (18). Taking an oral bisphosphonate for osteoporosis increased the risk of developing MRONJ with a reported odds ratio of 13.1 (19). The risk is much higher for patients being administered bisphosphonates intravenously or for treatment of malignancies (18). Patients are recommended to have a dental assessment and any significant dental treatment prior to commencing these medications and protocols have been suggested for the management of dental extractions once the medication has been commenced (18). Interestingly, in the present study most referrals in this area were from general medical practitioners and geriatric medicine specialists with only one referral in the sample received from the endocrinology unit.

Diseases of the circulatory system, musculoskeletal system and connective tissues, and endocrine, nutritional, and metabolic conditions were also common amongst the medical histories of referred patients in the present study despite fewer referrals from the cardiology unit and diabetes clinic. These figures are more likely to reflect the prevalence of hypertension and type 2 diabetes mellitus as medical co-morbidities within this medically-compromised patient cohort. This also reflects the prevalence of these conditions in the Australian population (20). Like many of these chronic medical conditions, oral health has been identified as a significant area of health expenditure in Australasia (20). Meeting the oral health needs of these patients is crucial to reducing the cost to society and preventing the potential deterioration of general health amongst these patients.

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In addition to the significant implications many of these chronic conditions can have to oral health, in particular periodontal disease, these results highlight the difficulty faced by many general dental practitioners in treating people with multiple medical comorbidities and polypharmacy. Although only one patient was referred for management because an anticoagulant was prescribed, it is the increasing prevalence of complex medical histories that necessitate the nature of specialty treatment that is being provided by such special needs dental units and dentists with experience in managing complex medical presentations. The results of this reflect data from one study conducted in Western Australia which found that although the majority of general dentists felt comfortable treating patients with complex medical backgrounds, only 7% of general dentists reported being extremely comfortable in treating this cohort of patients (21). Likewise, 82.9% of these dentists reporting being unsure about how to proceed with treatment for patients who are medically complex or compromised at least some of the time (21).

The results of this study also provided an interesting insight into how Special Needs Dentistry is perceived by general dental practitioners in Tasmania. As has been discussed previously, there appears to be significant concern amongst general practitioners regarding the treatment of patients prescribed anti-resorptive agents. This was reflected in patients requiring assessment prior to these therapies by medical professionals with a greater proportion of referrals from oral health professionals once treatment had commenced. Interestingly, despite some concern in the dental profession about the management of patients on novel oral anticoagulants, only one patient was referred to these clinics for this reason.

These findings could be interpreted in several ways. The lower rates of referrals from oral health professionals may reflect the competence of Tasmanian public dental practitioners in treating patients with special needs partly due to the lack of specialists in the state. Alternatively, it may be a reflection on the fact that dentists feel that as 142

the clinic is staffed by general dental practitioners that treatment in these facilities purely offers the advantage of reducing barriers to access of care and the support of a hospital facility. This would be in comparison to a higher level of expertise and care that may be provided if treatment was conducted by a specialist in Special Needs Dentistry.

As a result, this review of patient referrals provides initial data on the types of patients general dental practitioners feel would benefit from treatment being completed in a hospital-based facility. Likewise, it provides insight into the awareness amongst medical and allied health professionals into the influence medical conditions and therapeutic interventions may have on oral health and dental treatment.

This study provides a starting point for future research into the provision of care to patients with special needs. In particular, it provides a profile of patient referrals based on appointments which may assist with identifying unmet or under-represented populations for this service or a methodology for this to be replicated by other clinics. Likewise, comparison of this data to that of other special needs dental units may provide information about the nature of referrals from both dental and medical professionals as well as the influence of clinic location and workforce on the types of patients with special needs referred and treated in dedicated specialist facilities.

Conclusions

Referrals to Special Care Dental Units in Tasmania were more likely to be from medical practitioners and for the management of oral implications of medical conditions or medications. Referred patients had an average of 3 medical conditions and were more likely to be diseases of the circulatory system, malignant neoplasms, endocrine, nutritional, and metabolic disorders, or musculoskeletal problems. Bisphosphonates

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and Denosumab, both medications associated with the treatment of osteoporosis, multiple myeloma, and bone malignancies, and patients requiring or undergoing chemotherapy were the most common reasons for referral due to the potential impact of medications to provision of dental treatment. This study highlights the importance of the relationships between general and oral health and the recognition of this amongst medical and oral health professionals. Likewise, it provides impetus for future research into how the attributes of specialist dental clinics, such as location, scope, or specialist workforce proportions, may influence the types of patients referred for specialist care and the treatment they receive.

References

1. Dental Board of Australia. List of specialties [cited 8 November 2015]. Available from: www.dentalboard.gov.au/.../default.aspx?record=WD10%2F3238&dbid=AP&chk sum=hXwmbYjUdcXv23v2lFcC3w%3D%3D. 2. Department of Health and Human Services. Special Care Dental Services Hobart Tasmania, Australia: Tasmanian Government Department of Health and Human Services; 2015 [cited 8 November 2015]. Available from: http://www.dhhs.tas.gov.au/oralhealth/welcome_to_oral_health/special_care_ dental_services. 3. World Health Organization. ICD-10 Version: 2016: World Health Organization; 2016 [cited 5 June 2016]. Available from: http://apps.who.int/classifications/icd10/browse/2016/en. 4. World Health Organization Collaborating Centre for Drug Statistics Methodology. ATC/DDD Index 2016 Oslo, Norway: Norwegian Institute of Public Health; 2016 [updated 16 December 2015; cited 5 June 2016]. Available from: http://www.whocc.no/atc_ddd_index/. 5. Australian Bureau of Statistics. 1270.0.55.005 Australian Statistical Geography Standard (ASGS): Volume 5-Remoteness Structure, July 2011 Canberra ACT, Australia: Australian Bureau of Statistics; 2013 [updated 18 March 2016; cited 5 June 2016]. Available from: http://www.abs.gov.au/ausstats/[email protected]/mf/1270.0.55.005. 6. Ahmad OB, Boschi-Pinto C, Lopez AD, Murray CJ, Lozano R, Inoue M. Age standardization of rates: a new WHO standard. World Health Organization Geneva; 2001. 7. Department of Veterans' Affairs. Dental and allied health fee schedules Canberra ACT, Australia: Australian Government; 2015 [updated 30 October 2015; cited 5

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June 2016]. Available from: http://www.dva.gov.au/providers/fee- schedules/dental-and-allied-health-fee-schedules. 8. Dental Board of Australia. Dental Practitioner Registrant Data: September 2014: AHPRA, Dental Board of Australia; 2014 [cited 5 June 2016]. Available from: www.dentalboard.gov.au/.../default.aspx?record=WD14%2F15705&dbid=AP&ch ksum=Kg1InZCEe9O93eNlswncfg%3D%3D. 9. Royal Australasian College of Dental Surgeons. Specialist Dental Practice 2014 [cited 2 May 2015]. Available from: http://www.racds.org/RACDSNEW_Content/Education/Specialist_Dental_Practic e.aspx. 10. De Angelis A, Chambers I, Hall G. The accuracy of medical history information in referral letters. Australian Dental Journal. 2010;55(2):188-92. 11. Australian Bureau of Statistics. 3218.0 Regional Population Growth, Australia 2014-15 Canberra ACT, Australia: Australian Bureau of Statistics; 2016 [updated 30 March 2016; cited 5 June 2016]. Available from: http://www.abs.gov.au/AUSSTATS/[email protected]/Latestproducts/3218.0Main%20Fe atures452014- 15?opendocument&tabname=Summary&prodno=3218.0&issue=2014- 15&num=&view=. 12. Department of Health and Human Services. Royal Hobart Hospital Hobart Tasmania, Australia: Tasmanian Government; [cited 5 June 2016]. Available from: http://www.dhhs.tas.gov.au/hospital/royal-hobart-hospital. 13. Mohamed Rohani M, Calache H, Borromeo G. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia: The University of Melbourne; 2014. 14. Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences. 2017;6(6):123-31. 15. Hong CH, Napenas JJ, Hodgson BD, Stokman MA, Mathers-Stauffer V, Elting LS, et al. A systematic review of dental disease in patients undergoing cancer therapy. Supportive Care in Cancer. 2010;18(8):1007-21. 16. Michelet M. Caries and periodontal disease in cancer survivors. Evidence-based Dentistry. 2012;13(3):70-3. 17. Nabil S, Samman N. Risk factors for osteoradionecrosis after head and neck radiation: a systematic review. Oral Surgery, Oral Medicine, Oral Pathology and Oral Radiology. 2012;113(1):54-69. 18. Ruggiero SL, Dodson TB, Fantasia J, Goodday R, Aghaloo T, Mehrotra B, et al. American Association of Oral and Maxillofacial Surgeons position paper on medication-related osteonecrosis of the jaw—2014 update. Journal of Oral and Maxillofacial Surgery. 2014;72(10):1938-56. 19. Borromeo GL, Brand C, Clement JG, McCullough M, Crighton L, Hepworth G, et al. Bisphosphonate Exposure and Osteonecrosis of the Jaw. Journal of Bone and Mineral Research. 2015;30(4):749-50.

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20. Australian Institute of Health and Welfare. Australia's health 2014: Leading types of ill health: Australian Institute of Health and Welfare; 2014 [cited 1 June 2016]. Available from: http://www.aihw.gov.au/australias-health/2014/ill-health/. 21. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4).

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Special Needs Dentistry: Interdisciplinary management of medically- complex patients at hospital-based dental units in Tasmania, Australia

Authors: Mathew AWT Lim and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim and Mina Borromeo

Article status: Published in International Journal of Medical Research and Health Sciences, 2017

Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences 2017; 6(6): 123-131

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Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia

Abstract

Background: Increasing awareness of the interactions between oral and general health has led to the establishment of Special Needs Dentistry as a dental specialty in many countries. This specialty assists with the interdisciplinary management of patients between the medical and dental professions particularly those with complex medical problems, intellectual and physical impairments, and psychiatric conditions that may affect their oral health or the manner in which they receive treatment. However, little is known about the utilisation of specialised services provided to facilitate individuals with these needs.

Aim: The aim of this study was to understand current utilisation of hospital-based dental services established to provide medically-necessary dental care.

Methods: A retrospective review of the demographics and medical status of patients treated at referral hospital-based dental clinics in the state of Tasmania was completed for the month of August 2015.

Results: Patients treated at these units had a variety of medical backgrounds. Most (46.4%) were referred from medical professionals within the hospital. On average, patients treated at these units had 2.56 medical conditions and were taking 3.59 medications each. Many of these were chronic medical conditions known to have an interaction with oral health.

Conclusions: Our results demonstrate the growing recognition of dynamic interactions between oral and general health and the importance of these hospital-based units and interprofessional relationships in providing timely and holistic health care to these patients.

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Keywords: Special needs dentistry, Special care dentistry, Hospital dentistry, Oral health, Dental, Interdisciplinary care

Introduction

Historically, the oral cavity has been treated as separate from general health and health systems in many parts of the world have reflected this divide with minimal interaction between doctors and dentists. More recently, the growing interaction between oral and general health has been recognised, in particular, how one may exacerbate the effects of the other. Special Needs Dentistry (SND) was established as a dental specialty in Australia in 2003 recognising the need for growing interdisciplinary management of patients with complex medical conditions (1, 2). Specialists in this area assist with the provision of appropriate oral health care to individuals with intellectual and physical impairments, psychiatric conditions, medical conditions, and medications that may impact on their oral health or the way in which dental treatment is provided to individuals (1, 2). In many of these situations, these factors may act as barriers to access of ongoing dental care. Additionally, acute oral assessments and timely dental treatment are often required prior to significant medical interventions. Special needs dentists work in collaboration with other health professionals to adapt the dental treatment required in line with the patient’s current medical status and needs.

In recognition of the barriers that exist for many of these patients, many public dental services in Australia have developed initiatives including specialist units at major public or dental hospitals in order to address the treatment needs of these patients. Oral Health Services Tasmania has established Special Care Dental Units (SCDU) associated with the Royal Hobart Hospital and Northwest Regional Hospital (3). These referral- based units accept patients on referral from oral health and medical professionals with

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the aim of removing barriers that often prevent timely dental assessments and treatments based on medical priority (3).

Since the recognition of this dental specialty and the establishment of these clinics, limited information has been published about the types of patients treated at these specialised units. This study aimed to review the medical histories of patients treated at the Special Care Dental Units of Oral Health Services Tasmania to better understand service utilisation. It is hypothesised that the medical status of these patients will reflect the need for acute assessments and treatment involving the input from dentists thereby highlighting the important interaction between general health and the health of the oral cavity.

Methods

A retrospective review was conducted of records of all appointments for dental treatment at the Royal Hobart Hospital Special Care Dental Unit, Northwest Regional Hospital Special Care Dental Unit, Royal Hobart Hospital Day Surgery Unit, and Mersey Hospital Day Surgery Unit between August 1 and August 30, 2015. Information collected included patient demographics (gender, date of birth, residential postcode), the ability to consent for procedures, concession card (low income health care card, pensioner concession card) eligibility, referral source, and the medical history, including medical conditions and current medications. All reviews were conducted by a single examiner.

Data were recorded in an Excel spreadsheet (Microsoft Corporation, Seattle WA, USA) using a standardised data collection form. Medical conditions and medications were classified according to the World Health Organization International Classification of Disease 10 (ICD 10) and the Anatomical Therapeutic Chemical and Defined Daily Dose

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(ATC/DDD) classifications respectively and will be the focus of this paper (4, 5). The Australian Statistical Geography Standard (ASGS) Remoteness Areas Classification 2011 was used to group residential postcodes (6). Descriptive analysis of the data was completed using SPSS Statistics Version 23 (IBM Inc, Armonk NY, USA).

Ethics approval was obtained from the University of Melbourne Human Research Ethics Committee (Ethics ID 1544156) and the Tasmania Medical Human Research Ethics Committee (Ref No. H0015272).

Results

181 appointments were identified during the study periods. Demographic data has been described in Table 1 (7). The average age of patients was 52.3 years (Range: 13- 91 years) with equal numbers of males and females. Most patients (92.8%) had a health care card or pensioner concession card, and were thus eligible for treatment under the public dental system. In addition, the majority had the ability to self- consent for dental procedures (95.6%). Patients were predominantly from inner regional areas (59.1%). Although a significant proportion of the sample had missing referrals (37.0%), the majority of those that were reviewed were from medical professionals (46.4%).

The medical histories of patients had an average of 2.6 medical conditions (Range: 0- 11) (Fig. 1). The five most common medical conditions by body system were diseases of the circulatory system (35.4%), endocrine, nutritional, and metabolic conditions (27.1%), diseases of the musculoskeletal system and connective tissues (26.5%), mental and behavioural disorders (24.3%), and malignant neoplasms (22.7%) (Table 2). Of the conditions involving the circulatory system, hypertensive disease was the most common (50.6%) followed by ischaemic heart disease (12.6%) and cerebrovascular

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disease (12.6%). Diabetes mellitus (67.3%) was the most common of the endocrine, nutritional, and metabolic conditions and diseases of the musculoskeletal system and connective tissues largely comprised of arthropathies (50.0%) or disorders of bone mineral density (46.4%). Oropharyngeal cancers represented 7.1% of cases of malignant neoplasms while the majority were breast cancers (21.4%) followed by bone malignancies (11.9%), testicular and prostate cancers (11.9%), and cancers of the digestive organs (9.5%).

Table 1. Patient demographics for appointments at Special Care Dental Units in Tasmania.

Patient demographics N (%) Gender Male 89 (49.2) Age* <25 years 14 (7.7) 25-34 years 26 (14.4) 35-44 years 25 (13.8) 45-54 years 28 (15.5) 55-64 years 31 (17.1) 65-74 years 36 (19.9) >74 years 21 (11.6) Eligibility Eligible for public dental care 168 (92.8) Consent Ability to self-consent 173 (95.6) Remoteness of Inner regional 107 (59.1) residence† Outer regional 71 (39.2) Remote 3 (1.7) Referral source Medical professional 84 (46.4) Oral health professional 30 (16.6) No referral 67 (37.0) Total 181 (100) *Age categories were based on those used by the World Health Organization (8) †Australian Statistical Geography Standard (ASGS) Remoteness Areas Classification 2011 (6)

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Figure 1. Number of medical conditions reported in the medical history of patients with appointments at Special Care Dental Units in Tasmania.

28 26 24 22 20 18 16 14 12

Frequency(%) 10 8 6 4 2 0 0 1 2 3 4 5 6 7 8 9 10 11 Number of medical conditions

Table 2. Medical conditions of patients with appointments at Special Care Dental Units grouped by body system using the World Health Organization International Classification of Diseases 10 (ICD-10) (4).

Body system N (%) Viral infections of central nervous system 1 (<0.1) Viral infections characterised by skin and mucous membrane lesions 4 (<0.1) Malignant neoplasms 41 (22.7) In situ/benign neoplasms, diseases of blood and blood forming organs, and certain disorders 8 (<0.1) involving the immune mechanism Endocrine, nutritional and metabolic diseases 49 (27.1) Mental and behavioural disorders 44 (24.3) Diseases of the nervous system 26 (14.4) Diseases of the eye and adnexa, diseases of ear and mastoid process 1 (<0.1) (Hearing loss/deaf) Diseases of circulatory system 64 (35.4) Diseases of respiratory system 34 (18.8) Diseases of digestive system 34 (18.8) Diseases of skin and subcutaneous tissue 2 (<0.1) Diseases of the musculoskeletal system and connective tissue 48 (26.5) Diseases of genitourinary system 7 (<0.1) Congenital malformations, deformations and chromosomal abnormalities 3 (<0.1) Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified 3 (<0.1) Physical injuries 4 (<0.1) Other medical procedures 1 (<0.1) Factors influencing health status and contact with health services 17 (0.9) Total 181 (100) 153

Most of the psychiatric and behavioural disorders reported were mood affective disorders (40.0%) and anxiety disorders (23.6%). Individuals with mental and behavioural disorders constituted the largest proportion (37.5%) of patients treated under general anaesthesia. Other medical diagnoses amongst these patients included digestive (18.75%), neural (12.5%), endocrine (6.25%), respiratory (6.25%), cutaneous (6.25%), musculoskeletal (6.25%), and genitourinary conditions (6.25%), and congenital malformations and chromosomal abnormalities (6.25%).

Patients reported taking a total of 650 medications with each taking an average of 3.6 medications (Range 0-15) (Fig. 2). Almost a third of patients (32.6%) were reported to not be taking any medications. The two most commonly prescribed medication groups by number of patients were medications for the nervous system (45.3%) and alimentary tract and metabolism (43.1%) (Table 3). This was also reflected in the number of medications prescribed with those for the nervous system (26.6%), alimentary tract and metabolism (24.6%), cardiovascular system (21.2%), musculoskeletal system (0.1%), and respiratory system (0.1%) being the five most commonly prescribed medication categories.

Figure 2. Number of medications reported in patient medical histories at Special Care Dental Units across Tasmania.

35 30 25 20 15

Frequency(%) 10 5 0 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 Number of medications

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Medication category Number of patients Number of (%) medications (%) Alimentary tract and metabolism 78 (43.1) 160 (24.6) Blood and blood forming organs 19 (10.5) 19 (<0.1) Cardiovascular system 61 (33.7) 138 (21.2) Dermatologicals 1 (<0.1) 1 (<0.1) Genitourinary and sex hormones 8 (<0.1) 10 (<0.1) Systemic hormonal preparations 17 (9.4) 17 (<0.1) Anti-infectives for systemic use 15 (8.3) 18 (<0.1) Anti-neoplastics and immunomodulating agents 18 (9.9) 24 (<0.1) Musculoskeletal system 49 (27.1) 56 (0.1) Nervous system 82 (45.3) 173 (26.6) Respiratory system 18 (9.9) 33 (0.1) Sensory organs 1 (<0.1) 1 (<0.1) Total 181 (100) 650 (100)

Discussion

Special Needs Dentistry (SND) is defined as “the branch of dentistry that is concerned with the oral health care of people with intellectual disability, medical, physical or psychiatric conditions that require special methods or techniques to prevent or treat oral health problems or where such conditions necessitate special dental treatment plans” (2). Following the recognition of the specialty in 2003, many public dental services in Australia established dedicated units to provide specialised dental care to these patients (2). In Tasmania, two referral-based Special Care Dental Units were established from 2009 at the Royal Hobart Hospital and North-West Regional Hospital to meet the oral health treatment needs of these patients. Additionally, these services were aimed at promoting a greater interaction with the medical profession and increasing access to dental care for patients deemed to have medical need for this care. Services provided by these units include treatment of outpatients at hospital- based clinics and general anaesthetic services at day surgery units at both the Royal

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Hobart and Mersey Hospitals (3). Unlike many other dental clinics provided by the public sector, these units do not have low income eligibility criteria based on health care card or pensioner concession card status. Since their establishment little information has been published about the nature of patients referred to or treated at these units or similar units around the country.

Comparing the medical profile of patients treated at the units reviewed in this study with that of published data regarding referrals to other units in Australia is complicated by differences in methodology. Despite this, comparisons indicated that patients treated at the Tasmanian units were more medically-complex than those at comparable units with Tasmanian patients having higher proportions of medical conditions across most categories in the sample examined (9, 10). In particular, patients in this study had higher proportions of neoplasms, metabolic, nutritional, and endocrine conditions, circulatory disease, diseases of the respiratory system, and musculoskeletal and connective tissues conditions. In contrast, other units in Australia and internationally had higher rates of individuals with physical and intellectual disabilities (9, 10). Interestingly, a similar hospital-based unit in Madrid, Spain also showed high levels of medically-compromised patients, however, these had a greater prevalence of blood disorders, infectious conditions, kidney and genitourinary conditions, and autoimmune disorders (10). Further investigation is required to ensure that these patient cohorts are not experiencing barriers to accessing care at the Special Care Dental Units in Tasmania and that it may instead be a reflection of different population demographics.

Conditions prevalent amongst patients treated at the Tasmanian Special Care Dental Units are concordant with chronic diseases that have been reported to place a significant burden on health care systems both internationally and in Australia (11-13). Both the World Health Organization and Australian Institute of Health and Welfare attributed a significant burden of disease to chronic conditions such as cardiovascular 156

disease and cancers (11, 12). Similar results have been reported in New Zealand, Canada, the United States, the United Kingdom, and Ireland (13). Limited population statistics for Tasmania are available regarding those medical conditions that were less common amongst the study sample and thus conclusions cannot be made about the lower prevalence of these in our study. Further investigation would be warranted to elicit if these differences are reflective of differences in disease patterns across the population or whether these patients are currently not receiving care at these units. If the latter is the case, strategies may be indicated to investigate possible barriers in the current referral pathway for these patients or to raise awareness amongst health professionals treating patients with these conditions about the availability of this service and the possible impact of oral health in the overall management of these patients.

Patients with intellectual and physical impairments had a lower prevalence in this study sample in comparison to other studies (9, 10). These conditions may impact on the ability of individuals to maintain their oral health or access oral health care. In our study there was a greater tendency for these patients to be treated under general anaesthesia. This is perhaps reflective of the availability of facilities and clinicians throughout Oral Health Services Tasmania to manage patients with milder impairments with only those that exhibited behaviours not conducive to treatment in the dental chair referred for management under general anaesthesia. Although another possible explanation may be that these individuals did not have co-morbidities that required the support of a hospital facility it is pertinent to recognise that many patients affected by syndromes often do experience multiple medical conditions with multi-system involvement. Hence, their management should be considered in this context beyond their more obvious impairments.

Many of these co-morbidities, as well as chronic medical conditions, can also have specific implications for the dental management of these patients with significant links 157

established between these conditions and oral disease. For example, periodontal disease has been linked to cardiovascular disease, diabetes mellitus, and rheumatoid arthritis (14-17). Although atherosclerotic cardiovascular disease is a complex multi- factorial condition, periodontitis has been shown to increase risk of future atherosclerosis-associated events independent of other well-known risk factors (16). In addition, evidence exists to demonstrate that treatment of periodontal disease reduces systemic inflammation and future risk of cardiovascular disease (16). Dental treatment to reduce gingival inflammation due to periodontal disease has also been shown to improve markers of systemic inflammation and responsiveness to haemodialysis therapy in patients with chronic renal disease (18). Similarly, it has been established that poor glycaemic control in diabetes is associated with periodontal disease and that direct and dose-related bidirectional relationships exist between periodontal severity and diabetic complications (19-21). Furthermore, randomised controlled trials have demonstrated that periodontal therapy can result in a similar clinical impact to the addition of a second pharmacological therapy resulting in approximately a 0.4% reduction in HbA1C in 3 months (20). Similar relationships are being established between the chronic inflammatory states of rheumatoid arthritis and Sjӧgren’s syndrome and periodontal disease with Porphyromonas gingivalis commonly implicated in periodontal disease believed to predispose to more severe forms of both diseases (17, 22, 23). Early research has also suggested a role for these same periodontal pathogens and chronic inflammatory processes in Alzheimer’s disease (24- 27).

Likewise, other conditions, such as cancer, which featured in many patients in the present study, can have significant implications for oral disease and dental treatment. In addition to the potential presence of malignant lesions in the mouth, surgical, radiotherapeutic, and chemotherapeutic treatment of these conditions can result in significant changes to the oral cavity which can in turn impact on quality of life. Surgery can cause significant alterations to the normal form and function of oral structures and require significant rehabilitation, sometimes requiring prosthetic 158

obturation. Both head and neck radiotherapy and chemotherapy have been associated with the development of oral mucositis and dry mouth (28-30). In addition to these acute side effects, radiation can cause long-term damage to the salivary glands resulting in reduced saliva flow and significant morbidity associated with the dry mouth, taste alteration, oral candidal infections, and increased risk of radiation caries (dental decay) (29, 31, 32). Furthermore, risks of osteoradionecrosis are associated with extraction of teeth from within the irradiated field (32). As a result, patients diagnosed with cancer are recommended to have a dental assessment prior to the commencement of their oncology treatment and for ongoing reviews to be completed by dentists experienced in the management of oncology patients with the view to addressing oral side effects and instigating preventive measures thereby mitigating the potential adverse effects (32, 33). This necessity for multidisciplinary management of these patients, including the involvement of a dentist, was demonstrated by the high prevalence of cancer patients being treated at these hospital dental units.

A significant proportion of the burden of disease in developed countries can also be attributed to management of these chronic conditions including the use of medications. An Australian study reported that 87.1% of Australians over the age of 50 took one or more medications within a 24-hour period with 43.3% of these prescribed five or more medications during the same period of time (34). The results of our study were not as high with only 65% of patients taking five or more medications on a regular basis. The discrepancy may lie in the fact that just under half of our sample was under the age of 50. Furthermore, the most commonly reported medication categories in the current study reflected both international and Australian trends of prescribing associated with the diseases of the alimentary tract and metabolism, cardiovascular system, central nervous system, and respiratory system being highly prominent (35, 36).

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Although most medications can be managed by dental practitioners without significant complications, an area of interest within the dental profession is the increasing use of anti-resorptive medications such as bisphosphonates and monoclonal antibodies (e.g. Denosumab), in the management of osteoporosis, reduced bone mineral density, and bone malignancies. Particular concern relates to the predisposition to medication- related osteonecrosis of the jaw (MRONJ). This condition is defined as an area of exposed bone in the maxillofacial region that has persisted for a period of 8 weeks subsequent to a dental intervention or occurring spontaneously and in the absence of other potential bone pathology, such as metastatic bone disease, or previous irradiation to the region in a patient with a history of use of bisphosphonate or other anti-resorptive medications (37, 38). Although the incidence of this condition is believed to be relatively low, recent publications have suggested that patients taking an oral bisphosphonate for management of osteoporosis had an odds ratio of 13.1 for delayed dental healing following an extraction (37). This is thought to be even higher for those being treated with infusions, who have had longer medication exposure, when treatment is for bone malignancies, and where other medical co-morbidities exist, such as those who are immunosuppressed or have concomitant long-term use of corticosteroids (38). Significant morbidity can be associated with MRONJ, which is often recalcitrant to management. As a result, a dental review prior to commencing such medications, regular oral reviews including periodontal management, and avoidance of oral trauma are advocated, reflecting the need for special needs dental clinics (38). Earlier work by the researchers has shown that these patients form a significant proportion of patients in these Tasmanian units often referred due to potential oral complications associated with anti-resorptive medications (39).

Due to well-established guidelines, most dental practitioners are comfortable treating patients prescribed Warfarin. Many however remain uncertain about the best way to manage patients on novel oral anti-coagulants (NOAC) drugs (40). Unlike the International Normalised Ratio (INR) that can be used to assess bleeding risk for warfarinsed patients, there are no tests that have been standardised for assessment of 160

NOACs (41). The literature currently advocates that these drugs should not be ceased and bleeding should be managed primarily with local haemostatic measures (41, 42). For many dental practitioners, concerns arise if patients require dental extractions, and hence management of this group may be best completed by dentists at these special needs dental units due to their clinical experience and the support of hospital facilities including the hospital environment.

In addition to the effects of individual medications, polypharmacy has been known to be associated with reduced saliva flow which poses significant risks for dental disease (43). In general, dental practitioners are trained to treat patients with an awareness of their medical conditions. However, this can become more complex as the number of conditions and medications increases or where the medical conditions begin to influence the nature of treatment required or the manner in which it must be facilitated, comfort in managing such patients declines (44).

This study provides an initial profile of the medical background of patients referred to and receiving care at these units. While this begins to address deficiencies in our current knowledge of the utilisation of these services, the study design does have limitations. All retrospective reviews of medical records will always be limited by the variability of information contained in these records. Furthermore, despite efforts made to try and ensure the time period chosen for this review was representative; this may have introduced unintentional selection bias. Likewise, the limited time period restricted the sample size in this study. Future studies would ideally be conducted prospectively so that information collected could be more accurately standardised and completed over a longer time period to confirm the result of the present study. Likewise, other similar programs and services would be encouraged to complete similar research to better inform the specialty. In doing so, models of care can further be adapted to ensure equitable, timely and accessible dental care for this group of patients. 161

Conclusion

Oral health, along with cardiovascular disease, mental health disorders, and musculoskeletal conditions have been identified as the most costly disease groups to health expenditure in Australasia (13). The links between oral and general health have been established and the evolution of our understanding of many chronic conditions is likely to increase the nature of these interactions. Special needs dental units, such as those established by Oral Health Services Tasmania, offer patients care that is appropriate to both their dental and medical needs and where their medical status may begin to influence their oral condition or the way in which treatment is provided. Increased awareness of the availability of these referral clinics amongst health professionals outside of the oral health sector will continue to foster the growth of this relatively new dental speciality.

This study provides an insight into the medical histories of patients treated at Special Needs Dental Units in Australia. The patients treated at Special Care Dental Units in Tasmania demonstrated significant variation in medical status but, on average, had 2.56 medical conditions and were taking 3.59 medications each. Due to the medical complexity of these patients, it is clear that significant interprofessional relationships between medical and dental professionals are paramount to providing holistic health care. Oral health can no longer be considered as separate from general health and the optimal health outcomes for these patients can be fostered through the development of special needs clinics to assist in removing the traditional barriers between these health professions and ensure timely and appropriate dental care for these patients.

Conflict of interest statement: The authors have no conflicts of interest to declare.

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Acknowledgements: The authors wish to acknowledge the support of the Commonwealth Government of Australia through the Australian Government Research Training Program Scholarship.

References

1. Royal Australasian College of Dental Surgeons. Specialist Dental Practice 2014 [cited 2 May 2015]. Available from: http://www.racds.org/RACDSNEW_Content/Education/Specialist_Dental_Practic e.aspx. 2. Dental Board of Australia. List of specialties [cited 2 May 2015]. Available from: www.dentalboard.gov.au/.../default.aspx?record=WD10%2F3238&dbid=AP&chk sum=hXwmbYjUdcXv23v2lFcC3w%3D%3D. 3. Department of Health and Human Services. Special Care Dental Services Hobart Tasmania, Australia: Tasmanian Government Department of Health and Human Services; 2015 [cited 8 November 2015]. Available from: http://www.dhhs.tas.gov.au/oralhealth/welcome_to_oral_health/special_care_ dental_services. 4. World Health Organization. ICD-10 Version: 2016: World Health Organization; 2016 [cited 5 June 2016]. Available from: http://apps.who.int/classifications/icd10/browse/2016/en. 5. World Health Organization Collaborating Centre for Drug Statistics Methodology. ATC/DDD Index 2016 Oslo, Norway: Norwegian Institute of Public Health; 2016 [updated 16 December 2015; cited 5 June 2016]. Available from: http://www.whocc.no/atc_ddd_index/. 6. Australian Bureau of Statistics. 1270.0.55.005 Australian Statistical Geography Standard (ASGS): Volume 5-Remoteness Structure, July 2011 Canberra ACT, Australia: Australian Bureau of Statistics; 2013 [updated 18 March 2016; cited 5 June 2016]. Available from: http://www.abs.gov.au/ausstats/[email protected]/mf/1270.0.55.005. 7. Lim MAWT, Borromeo GL. Dental treatment received by medically-compromised patients treated at Special Needs Dental units in Tasmania, Australia. (Submitted for publication). 8. Ahmad OB, Boschi-Pinto C, Lopez AD, Murray CJ, Lozano R, Inoue M. Age standardization of rates: a new WHO standard. World Health Organization Geneva; 2001. 9. Rohani M. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia. Melbourne Vic, Australia: The University of Melbourne; 2014. 10. Monteserín-Matesanz M, Esparza-Gómez GC, García-Chías B, Gasco-García C, Cerero-Lapiedra R. Descriptive study of the patients treated at the clinic “Integrated Dentistry for Patients with Special Needs” at Complutense University 163

of Madrid (2003-2012). Medicina oral, patologia oral y cirugia bucal. 2015;20(2):e211. 11. World Health Organization. Preventing chronic diseases: a vital investment: WHO global report. 2005. 12. Australian Institute of Health and Welfare. Australian Burden of Disease Study 2011: Australian Institute of Health and Welfare; 2011 [cited 1 June 2016]. Available from: http://www.aihw.gov.au/burden-of-disease/. 13. Australian Institute of Health and Welfare. Australia's health 2014: Leading types of ill health: Australian Institute of Health and Welfare; 2014 [cited 1 June 2016]. Available from: http://www.aihw.gov.au/australias-health/2014/ill-health/. 14. Humphrey LL, Fu R, Buckley DI, Freeman M, Helfand M. Periodontal disease and coronary heart disease incidence: a systematic review and meta-analysis. Journal of General Internal Medicine. 2008;23(12):2079-86. 15. Scannapieco FA, Bush RB, Paju S. Associations between periodontal disease and risk for atherosclerosis, cardiovascular disease, and stroke. A systematic review. Annals of Periodontology. 2003;8(1):38-53. 16. Tonetti MS, Dyke TE. Periodontitis and atherosclerotic cardiovascular disease: consensus report of the Joint EFP/AAP Workshop on Periodontitis and Systemic Diseases. Journal of Clinical Periodontology. 2013;40(s14). 17. Bartold P, Marshall R, Haynes D. Periodontitis and rheumatoid arthritis: a review. Journal of Periodontology. 2005;76(11-s):2066-74. 18. Siribamrungwong M, Puangpanngam K. Treatment of periodontal diseases reduces chronic systemic inflammation in maintenance hemodialysis patients. Renal Failure. 2012;34(2):171-5. 19. Tunes RS, Foss-Freitas MC, Nogueira-Filho GdR. Impact of periodontitis on the diabetes-related inflammatory status. Journal of the Canadian Dental Association. 2010;76:1-7. 20. Chapple IL, Genco R. Diabetes and periodontal diseases: consensus report of the Joint EFP/AAP Workshop on Periodontitis and Systemic Diseases. Journal of Clinical Periodontology. 2013;40(s14). 21. Mealey BL, Rethman MP. Periodontal disease and diabetes mellitus. Bidirectional relationship. Dentistry Today. 2003;22(4):107-13. 22. Maresz KJ, Hellvard A, Sroka A, Adamowicz K, Bielecka E, Koziel J, et al. Porphyromonas gingivalis facilitates the development and progression of destructive arthritis through its unique bacterial peptidylarginine deiminase (PAD). PLoS Pathogens. 2013;9(9):e1003627. 23. Fuggle NR, Smith TO, Kaul A, Sofat N. Hand to Mouth: A systematic review and meta-analysis of the association between rheumatoid arthritis and periodontitis. Frontiers in Immunology. 2016;7:1-10. 24. Ide M, Harris M, Stevens A, Sussams R, Hopkins V, Culliford D, et al. Periodontitis and Cognitive Decline in Alzheimer’s Disease. PloS One. 2016;11(3):e0151081. 25. Singhrao SK, Harding A, Poole S, Kesavalu L, Crean S. Porphyromonas gingivalis periodontal infection and its putative links with Alzheimer’s disease. Mediators of Inflammation. 2015;2015:1-10.

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26. Kamer AR, Craig RG, Dasanayake AP, Brys M, Glodzik-Sobanska L, de Leon MJ. Inflammation and Alzheimer's disease: possible role of periodontal diseases. Alzheimer's & Dementia. 2008;4(4):242-50. 27. Singhrao SK, Harding A, Chukkapalli S, Olsen I, Kesavalu L, Crean S. Apolipoprotein E Related Co-Morbidities and Alzheimer’s Disease. Journal of Alzheimer's Disease. 2016(Preprint):1-14. 28. McGowan D. Chemotherapy-induced oral dysfunction: a literature review. British Journal of Nursing. 2008;17(22):1422-6. 29. Chambers MS, Garden AS, Kies MS, Martin JW. Radiation‐induced Xerostomia in patients with head and neck cancer: Pathogenesis, impact on quality of life, and management. Head & Neck. 2004;26(9):796-807. 30. Lalla RV, Bowen J, Barasch A, Elting L, Epstein J, Keefe DM, et al. MASCC/ISOO clinical practice guidelines for the management of mucositis secondary to cancer therapy. Cancer. 2014;120(10):1453-61. 31. Wijers OB, Levendag PC, Braaksma MM, Boonzaaijer M, Visch LL, Schmitz PI. Patients with head and neck cancer cured by radiation therapy: A survey of the dry mouth syndrome in long‐term survivors. Head & Neck. 2002;24(8):737-47. 32. Hancock PJ, Epstein JB, Sadler GR. Oral and dental management related to radiation therapy for head and neck cancer. Journal of the Canadian Dental Association. 2003;69(9):585-90. 33. McGuire DB, Correa MEP, Johnson J, Wienandts P. The role of basic oral care and good clinical practice principles in the management of oral mucositis. Supportive Care in Cancer. 2006;14(6):541-7. 34. Morgan TK, Williamson M, Pirotta M, Stewart K, Myers SP, Barnes J. A national census of medicines use: a 24-hour snapshot of Australians aged 50 years and older. Medical Journal of Australia. 2012;196(1):50-3. 35. World Health Organization. The World Medicines Situation 2011. Geneva, Switzerland: World Health Organization; 2011. 36. Mabbott V, Storey P. Australian Statistics on Medicines 2014. Canberra, Australia: Pharmaceutical Benefits Scheme; 2015. 37. Borromeo GL, Brand C, Clement JG, McCullough M, Crighton L, Hepworth G, et al. Bisphosphonate Exposure and Osteonecrosis of the Jaw. Journal of Bone and Mineral Research. 2015;30(4):749-50. 38. Ruggiero SL, Dodson TB, Fantasia J, Goodday R, Aghaloo T, Mehrotra B, et al. American Association of Oral and Maxillofacial Surgeons position paper on medication-related osteonecrosis of the jaw—2014 update. Journal of Oral and Maxillofacial Surgery. 2014;72(10):1938-56. 39. Lim MAWT, Borromeo GL. Patient referrals to special needs dental units in Tasmania, Australia. Journal of Disability and Oral Health. 2017;18(3):87-94. 40. Oral and Dental Expert Group. Therapeutics guidelines: oral and dental. Version 2. Version 2 ed. Melbourne, Australia: Therapeutic Guidelines Limited; 2012. 41. Thean D, Alberghini M. Anticoagulant therapy and its impact on dental patients: a review. Australian Dental Journal. 2016;61(2):149-56. 42. van Diermen DE, van der Waal I, Hoogstraten J. Management recommendations for invasive dental treatment in patients using oral antithrombotic medication,

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including novel oral anticoagulants. Oral surgery, oral medicine, oral pathology and oral radiology. 2013;116(6):709-16. 43. Moore PA, Guggenheimer J. Medication-induced hyposalivation: etiology, diagnosis, and treatment. Compendium of continuing education in dentistry (Jamesburg, NJ: 1995). 2007;29(1):50-5. 44. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4).

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Utilisation of dental services for people with special health care needs in Australia

Authors: Mathew AWT Lim, Sharon AC Liberali, and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim, Sharon Liberali, and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim, Sharon Liberali, and Mina Borromeo

Article status: Published in BMC Oral Health, 2020.

Lim MAWT, Liberali SAC, Borromeo GL. Utilisation of dental services for people with special health care needs in Australia. BMC Oral Health 2020; 20: 360. https://doi.org/10.1186/s12903-020-01354-6

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Utilisation of dental services for people with special health care needs in Australia

Abstract

Background: To explore the profile of patients and treatment delivered at specialist referral centres for individuals with special needs.

Methods: A cross-sectional audit was conducted of the health records of all patients with appointments at two of Australia’s largest referral centres for patients with special needs, the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne and the Special Needs Unit at the Adelaide Dental Hospital, for the month of August 2015.

Results: The profile of patients treated at these specialist units demonstrates the diversity of individuals with additional health care needs that general dentists feel require specialised oral health care. The Adelaide-based clinic had a greater proportion of complex medical patients in comparison to those treated in Melbourne who were more likely to have a disability or psychiatric condition and were less likely to be able to self-consent for treatment. Interestingly, despite similar workforce personnel numbers, there were approximately twice as many appointments at the Special Needs Unit in Adelaide than the Integrated Special Needs Department in Melbourne during the study period which may have reflected differences in workforce composition with a greater use of dental auxiliaries at the Adelaide clinic.

Conclusions: The results of this study provide an initial profile of patients with special needs referred for specialist care in Australia. However, the differences in patient profiles between the two units require further investigation into the possible influence of service provision models and barriers to access of care for individuals with special needs and to ensure equitable access to health care.

Key words: Delivery of Health Care, Dental Care for Aged, Dental Care for Chronically Ill, Dental Care for Disabled, Health Services Accessibility

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Background

Individuals with special needs, ranging from those with disabilities to those with complex health issues, commonly report experiencing problems with accessing routine dental care (1-3). Worryingly, despite increasing advocacy for these patient groups, improvements to university training programs, and increasing information about the links between oral and systemic health, these individuals continue to experience problems with accessing dental care largely due to the reluctance of many oral health professionals to treat them (2, 4, 5).

In order to address this ongoing issue, Australia and New Zealand were amongst the first countries to establish special needs dentistry as a registrable dental specialty and, in doing so, recognise the growing group of individuals within our adult population with additional health care needs, and how this can impact on their oral health or ability to access health care (6, 7). Previously, many of these individuals were managed by paediatric dental specialists who continued to provide care to children with special needs (8). Consequently, special needs dentistry has evolved to be defined as a speciality that “supports the oral health care needs of people with an intellectual disability, medical, physical or psychiatric conditions that require special methods or techniques to prevent or treat oral health problems, or where such conditions necessitate special dental treatment plans” (9).

Despite this positive move forward, special needs dentistry remains a relatively new dental specialty and little is known about the utilisation of referral-based services provided by the specialty in countries like Australia, New Zealand, or the United Kingdom (10-12). This information is vital to ensuring adequate access to dental services for these individuals as well as informing other countries who may be considering whether the recognition of such a specialty is necessary. In Australia, 169

government-funded tertiary dental facilities in several major cities have established referral-based clinics specialised in and dedicated solely to the management of patients with special needs. The five major referral centres across the country include specialist departments at the Royal Dental Hospital of Melbourne in Melbourne, Victoria, the Adelaide Dental Hospital in Adelaide, South Australia, the Sydney Dental Hospital and Westmead Oral Health Centre in Sydney, New South Wales, and the University of Queensland Oral Health Centre in Brisbane, Queensland. Although the organisation of community dental services and hospital dental clinics vary between states, the specialist workforce at these specialised clinics provides support to their own staff and the wider public dental system in managing the oral health needs of the eligible population of individuals with special needs.

This study will examine the patients treated and services provided by two of the largest and most established specialist units in Australia: the Integrated Special Needs Department (ISND) at the Royal Dental Hospital of Melbourne, Victoria and the Special Needs Unit (SNU) at the Adelaide Dental Hospital, South Australia. In addition to establishing a valuable profile of the types of patients with special needs referred for specialist care in this country, comparison between these two units with different service models, may assist in developing a greater understanding of how differences in service provision may influence access to dental care and the nature of dental care provided for individuals with special needs.

Methods

A cross-sectional review was conducted of all patient appointments at referral-based specialist units for patients with special needs at the Royal Dental Hospital of Melbourne and Adelaide Dental Hospital between August 1, 2015 and August 31, 2015. Both are the major referral centres for the oral health care of eligible patients with additional health care needs in their respective states. At the Royal Dental

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Hospital of Melbourne appointments included those provided by the Integrated Special Needs Department (ISND), Domiciliary Service, and patients treated on dedicated ISND general anaesthetic lists at the Day Surgery Unit located at the Royal Dental Hospital of Melbourne. At the Special Needs Unit (SNU) in Adelaide, appointments included those provided at the specialist unit at the Adelaide Dental Hospital (ADH) as well as dental clinics at The Queen Elizabeth Hospital (TQEH), Highgate Park, and the Modbury GP Plus Superclinic.

The patients treated during the audit period were identified from electronic appointment books. Patient records were reviewed for demographic information (gender, date of birth), ability to consent, eligibility for public dental care, reason for referral, medical history, and treatment received.

Within the Australian setting, individuals are generally only able to access government- funded public dental services based on level of socio-economic disadvantage except in special circumstances which can vary between systems. For example, individuals in South Australia who are receiving treatment at certain public hospitals may be able to access public dental care only whilst they remain inpatients. Eligibility for public dental care is otherwise usually determined by whether an individual holds an Australian government-issued concession health care card or pensioner card which were the criteria for eligibility used in this study.

The audit of clinical records was conducted by a single investigator with data recorded using a standardised data collection sheet developed by the research team. Medical conditions and medications were recorded using the World Health Organization International Classification of Disease 10 (ICD-10) and the Anatomical Therapeutic Chemical and Defined Daily Dose (ATC/DDD) classifications (13, 14). All medical conditions, not just the primary reason for referral, were recorded. SPSS Statistics 171

Version 23 (IBM Inc, Armonk NY, USA) was used for data analysis. Although this analysis was primarily descriptive, statistical tests, including chi-square tests and confidence intervals, were used where required with statistical significance reported at the level of p<0.05.

As all data obtained from patient records was deidentified, and due to the impractical nature of contacting each individual patient, it was deemed that consent for access to individual records was not required by the relevant human research ethics committees. Ethics approval for this project was obtained from the Melbourne Dental School Human Ethics Advisory Group and University of Melbourne Human Research Ethics Committee (Ethics ID 1544156), Dental Health Services Victoria (DHSV) (ID 297), SA Health Human Research Ethics Committee (HREC Ref No. HREC/15/SAH/141), and Central Adelaide Local Health Network/South Australian Dental Service Evaluation and Research Unit (LNR SSA Ref No. AU/16/4353215).

Results

During the study period, 1908 appointments were reviewed across the two centres with approximately two-thirds of these appointments (64.6%) affiliated with the Special Needs Unit (SNU) in Adelaide. A full breakdown of the number of appointments by clinic is provided in Table 1.

During the study period, repeat appointments for the same patient represented approximately one quarter of appointments in the Victorian group (n=171, 25.3%) and almost half of appointments in the South Australian cohort (n=570, 46.2%). 14.4% (n=97) of appointments at the RDHM in Melbourne were for initial visits for new referrals in comparison to 6.9% (n=82) at the SNU in Adelaide.

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Appointments were also reviewed in relation to the oral health professional conducting the appointment (Table 1). Although there were comparable numbers of full-time equivalent staff across the two services (RDHM=6.5 FTE, SNU=6.2 FTE), there was some variation in terms of workforce personnel, particularly the greater use of dental auxiliaries in Adelaide. Regardless, across both states more than half of all appointments were with general dentists (RDHM: 54.2%, SNU: 54.6%). The second most common oral health practitioner, in terms of appointment numbers, were specialists in special needs dentistry across all clinics except for the Domiciliary service in Victoria where 29.2% of appointments were conducted by dental prosthetists (denture technicians with additional training to provide direct patient care) and more than half (58.1%) by general dentists.

Royal Dental Hospital of Melbourne Special Needs Unit, Adelaide ISND Dom Total ADH TQEH Other Total RDHM SNU Specialist* 103 (23.5) 13 (5.5) 116 344 (34.6) 0 (0.0) 30 (63.8) 374 Training specialist* 0 (0.0) 14 (5.9) 14 36 (3.6) 1 (0.5) 3 (6.4) 40 General dentist 229 (52.2) 137 (58.1) 366 478 (48.1) 191 (99.0) 4 (8.5) 673 Hygienist 7 (1.6) 0 (0.0) 7 102 (10.3) 0 (0.0) 10 (21.3) 112 Prosthetist 2 (0.5) 69 (29.2) 71 0 (0.0) 0 (0.0) 0 (0.0) 0 Dental student 0 (0.0) 0 (0.0) 0 32 (3.2) 0 (0.0) 0 (0.0) 32 Other specialty 20 (4.6) 1 (0.4) 21 0 (0.0) 0 (0.0) 0 (0.0) 0

Cancelled 78 (17.8) 2 (0.9) 80 1 (0.1) 1 (0.5) 0 (0.0) 2 appointments Total appointments 439 236 675 993 193 47 1233

Patients treated 368 213 579 688 111 45 844 ISND: Integrated Special Needs Department + Day Surgery Unit, Dom: Domiciliary dental services; RDHM: Royal Dental Hospital of Melbourne, ADH: Adelaide Dental Hospital; TQEH: The Queen Elizabeth Hospital; Other: Highgate Park and Modbury GP Plus Superclinic, SNU: Special Needs Unit. *Refers to specialists and training specialists in special needs dentistry. Note: Some patients had more than one appointment scheduled during the study period

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Patient demographics were reviewed for each of the clinics. There was no difference in gender or mean age between those treated in South Australia (55.1 years, σ 15.5) and Victoria (55.3 years, σ 22.0), however, it was clear that older patients were more likely to be treated at certain clinics. In particular, the domiciliary service treated patients that were significantly older than in any other clinic with more than half (57.2%) aged over 75 years (Table 2). Just under one third (n=207, 31.9%) of referrals to RDHM were for domiciliary care.

Patients treated were also examined with respect to their eligibility for public dental care, defined as having an Australian government-issued concession health care card or pensioner card. A significantly greater proportion of patients treated by Adelaide- based clinics did not meet eligibility criteria (Table 3). Likewise, the proportion of patients able to self-consent for procedures was significantly greater in South Australian clinics (Table 3). In addition, the ability to self-consent was less likely for patients treated at Highgate Park/Modbury GP Plus Superclinic (n=1, 2.1%) and amongst those treated by the domiciliary service (n=76, 32.2%) in comparison to those treated at the ISND (n=246, 56.0%), Adelaide Dental Hospital (n=889, 89.5%), or The Queen Elizabeth Hospital (n=192, 99.5%).

Patient groups were also compared on the basis of referrals. Where a reason for referral could be identified from the patient records (n=1830, 95.9%), these were divided into four categories: medical, psychological, disability, and domiciliary care. Patient records where no referral could be identified were excluded from the analysis. ‘Medical’ referrals were defined as those where a medical condition or medication was identified as the primary reason for referral. Referrals that cited anxiety, phobia, or another psychiatric diagnosis likely to impact on dental treatment were categorised as ‘psychological’. Those that identified intellectual or physical disabilities as the primary reason were categorised as ’disability’ referrals.

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There were vastly different profiles with regards to referral reason between the two states. Higher rates of psychological and disability-based referrals were seen by ISND in Melbourne whereas the vast majority of patients treated by SNU in Adelaide were for medical reasons (Table 4). When divided by clinic, the South Australian results demonstrated a greater proportion of patients referred for medical reasons were treated at the hospital-based clinics: Adelaide Dental Hospital and The Queen Elizabeth Hospital (Table 4).

Royal Dental Hospital of Melbourne Special Needs Unit, Adelaide ISND Dom Total ADH TQEH Other Total RDHM SNU <25 76 (17.3) 2 (0.8) 78 (11.6) 21 (2.1) 6 (3.1) 1 (2.1) 21 (2.1) 25-34 61 (13.9) 3 (1.3) 64 (9.5) 100 (10.1) 9 (4.7) 0 (0.0) 100 (10.1) 35-44 77 (17.5) 5 (2.1) 82 (12.1) 147 (14.8) 7 (3.6) 3 (6.4) 147 (14.8) 45-54 82 (18.7) 25 (10.6) 107 258 (26.0) 37 (19.2) 13 (27.7) 258 (15.9) (26.0) 55-64 72 (16.4) 29 (12.3) 101 226 (22.8) 36 (18.7) 16 (34.0) 226 (15.0) (22.8) 65-74 39 (8.9) 37 (15.7) 76 (11.3) 155 (15.6) 42 (21.8) 11 (23.4) 155 (15.6) 75+ 32 (7.3) 135 (57.2) 167 86 (8.7) 56 (29.0) 3 (6.4) 86 (8.7) (24.7) Total 439 236 675 993 193 47 1233

Mean 45.6 73.4 55.3 53.5 62.9 57.2 55.1 (95% (43.0-47.3) (71.4-75.5) (52.6-54.5) (60.5- (53.0-61.3) CI) 65.3) ISND: Integrated Special Needs Department and Day Surgery Unit; Dom: Domiciliary Dental Service; RDHM: Royal Dental Hospital of Melbourne; ADH: Adelaide Dental Hospital; TQEH: The Queen Elizabeth Hospital; Other: Highgate Park and Modbury GP Plus Superclinic, SNU: Special Needs Unit.

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RDHM (n (%)) SNU (n (%)) Eligible 649 (96.1) 1186 (81.1)*

Self-consent 322 (48.4) 1082 (89.9)* Family member 321 (48.3) 104 (8.6) Other mPOA 7 (1.1) 1 (0.1) Section 42K 15 (2.3) 2 (0.2) Other 0 (0.0) 14 (1.2) Total 665 1203 * Statistically significant (p<0.05) Other mPOA: Other medical power of attorney, Section 42K: Application process for provision of consent by the Office of Public Advocate in the absence of an identifiable medical treatment decision maker.

Royal Dental Hospital of Melbourne Special Needs Unit, Adelaide Referral reason ISND Dom Total ADH TQEH Other Total SNU RDHM Medical 112 (27.6) 10 (35.7) 122 (28.1) 781 (80.0) 135 (87.7) 0 (0.0) 916 (77.8) Psychological 117 (28.8) 6 (21.4) 123 (28.3) 47 (4.8) 17 (11.0) 0 (0.0) 64 (5.4) Disability 177 (43.6) 12 (42.8) 189 (43.5) 148 (15.2) 2 (1.3) 47 (100.0) 197 (17.6) Total 406 28 434 976 154 47 1177

No medical 231 (52.6) 195 (82.6) 426 (63.1) 24 (2.4) 19 (9.8) 11 (23.4) 54 (4.4) history (n (%)) No medication 80 (18.2) 22 (9.3) 102 (15.1) 3 (0.3) 0 (0.0) 0 (0.0) 3 (0.2) list (n (%))

Number of 2.9 3.0 2.9 2.5 3.1 1.9 2.6 medical conditions 95% CI 2.7-3.2 2.4-3.6 2.7-3.1 2.4-2.6 2.8-3.3 1.6-3.3 2.5-2.7

Number of 2.3 2.0 2.2 3.6 4.1 2.7 3.6 medications 95% CI 1.9-2.6 1.5-2.5 1.8-2.4 3.4-3.8 3.6-4.5 1.7-3.7 3.5-3.8 ISND: Integrated Special Needs Department and Day Surgery Unit; Dom: Domiciliary dental service, RDHM: Royal Dental Hospital of Melbourne; ADH: Adelaide Dental Hospital; TQEH: The Queen Elizabeth Hospital; Other: Highgate Park and Modbury GP Plus Superclinic. 176

Medical conditions and medications were also reviewed in patient records. Records with no medical history or medication list dated within the 12 months prior to the appointment date were excluded from further analysis (Table 4). When the two states were compared, patients treated in Melbourne had a higher mean number of medical conditions (2.9, σ 1.8 vs. 2.6, σ 11.5; p<0.05) while those in Adelaide were taking more medications (3.6, σ 3.3 vs. 2.2, σ 3.4; p<0.05).

A profile of the recorded medical diagnoses of patients treated across the two specialist units, coded and grouped using ICD-10 categories, is provided in Table 5 (13). All medical diagnoses, not just the primary condition for referral, were included. A much higher proportion of patients treated at SNU in Adelaide had an infectious disease diagnosis or a history of malignant neoplasm. In contrast, there were higher proportions of patients with diseases affecting the nervous system and musculoskeletal system and connective tissues as well as those with mental and behavioural problems, congenital conditions, and sensory disturbances to hearing or sight treated in Melbourne.

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Body system RDHM (%) SNU (%) Infections and parasitic diseases 4.1 33.2 Malignant neoplasms 4.4 24.3 Blood and blood-forming organs 5.8 4.1 Endocrine, nutritional, and metabolic 27.1 22.9 Mental and behavioural 61.8 25.8 Nervous system 28.2 13.3 Eye and ear 3.9 0.6 Circulatory system 34.9 36.0 Respiratory system 15.1 18.0 Digestive system 17.0 12.9 Skin and subcutaneous tissue 2.3 2.0 Musculoskeletal system and connective tissue 25.0 14.1 Genitourinary system 4.8 4.7 Congenital abnormalities and conditions 9.0 3.9 originating in the perinatal period Physical or brain injuries 2.7 2.1 Note: More than one medical condition could be coded per patient

Dental treatment received at appointments was also compared between clinics. Treatment was categorised into six groups (Diagnostic, Periodontics, Restorative, Endodontics, Oral surgery, Other) based on the item numbers recorded for the appointment. The Other category primarily consisted of treatments involved in denture fabrication. Treatment did not differ significantly between the Melbourne and Adelaide clinics overall although a greater proportion of treatments in the Oral Surgery and Other categorises were provided at the ISND (Melbourne, Victoria). The frequency of endodontic procedures at SNU (Adelaide, South Australia) was double that completed at ISND (Melbourne, Victoria). The number of patients that failed to attend their dental appointment was higher in Adelaide with the number of failed appointments at the Adelaide Dental Hospital (33.6%) more than double that of the ISND (Melbourne, Victoria) (14.4) (Table 6).

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Royal Dental Hospital of Special Needs Unit, Adelaide Melbourne ISND Dom Total ADH TQEH Other Total RDHM SNU Diagnostic 186 89 (45.4) 275 393 60 (34.5) 32 (68.1) 485 (49.5) (48.1) (57.0) (53.3) Periodontics 73 (19.4) 17 (8.7) 90 (15.7) 101 7 (4.0) 26 (55.3) 134 (14.7) (14.7) Restorative 69 (18.4) 12 (6.1) 81 (14.1) 138 44 (25.3) 8 (17.0) 190 (20.0) (20.9) Endodontics 7 (3.6) 0 (0.0) 7 (1.2) 9 (1.3) 18 (10.3) 0 (0.0) 27 (3.0) Oral surgery 33 (8.8) 27 (13.8) 60 (10.5) 10 (1.5) 16 (9.2) 0 (0.0) 26 (2.9) Other 39 (10.4) 54 (27.6) 93 (16.3) 2 (0.3) 1 (0.6) 0 (0.0) 3 (0.3)

FTA 63 (14.4) 40 (16.7) 103 304 19 (9.8) 0 (0.0) 323 (15.3) (33.6) (26.2) ISND: Integrated Special Needs Department and Day Surgery Unit, Dom: Domiciliary service, RDHM: Royal Dental Hospital of Melbourne, ADH: Adelaide Dental Hospital, TQEH: The Queen Elizabeth Hospital, Other: Highgate Park and Modbury GP Plus Superclinic, SNU: Special Needs Unit, FTA: Failed to attend appointment

Discussion

Countries have sought to address issues relating to access to care for individuals with special needs in different ways with Australia and New Zealand leading many parts of the world in recognising special needs dentistry as a dental specialty (7). However, despite a number of specialised clinics having been established across Australia over the last 15 years, little is known about the utilisation of these services.

The results of this cross-sectional audit of two of Australia’s largest and most established referral centres for the dental management of individuals with special needs; the Integrated Special Needs Department (ISND) at the Royal Dental Hospital of Melbourne (RDHM) in Melbourne, Victoria and the Special Needs Unit (SNU) in Adelaide, South Australia, provide an initial understanding of the profile of patients 179

referred for specialist care and the treatment they receive. Despite the expected homogeneity of the populations serviced by these clinics, there were, in fact, differences when the profile of patients was compared. In particular, patients treated in Melbourne were more likely to have been referred because of either a physical or intellectual disability and were generally from older age groups. In contrast, those treated in Adelaide were more likely to be referred because of the impact of a medical condition on their oral health or dental treatment with a greater proportion not meeting conventional eligibility criteria for public dental care in Australia.

The difference in reason for referral between the two centres was of particular interest. The existing literature regarding referrals of patients with special needs in Australia is limited. A previous audit of referrals to RDHM (Melbourne, Victoria) found that the majority of patients (81.7%) were referred for medical reasons with a much smaller proportion due to behavioural issues (14.0%) or intellectual disability (21.0%) (10). The contrast with the results presented here is a consequence of differences in methodology with Rohani et al. allowing for patients to be referred for multiple reasons (10). The results of our study were consistent with the more common findings in the literature that general dentists tend to feel least comfortable with treating individuals with intellectual disabilities or behavioural problems and are thus more likely to refer them for specialist care (2-5).

The higher proportion of disability patients managed by the Melbourne unit may be the result of a number of reasons the first of which may be the influence of services offered, particularly the internal access to general anaesthetic lists at RDHM in comparison to Adelaide. Given the benefit of this modality in assisting in the provision of dental care to those who may not be able to accept conventional dental treatment, commonly those behavioural and compliance issues as has been described in the literature, this may be unsurprising compared to the proportion in the Adelaide clinic (15). 180

In a similar manner, the results demonstrate clearly how the domiciliary service in Melbourne improves access to dental care for older members of the community who may find it difficult attending a dental clinic. In the context of an aging population, and particularly for dependent older adults in residential aged care facilities, such modalities are important ways in which health care provision can be adapted to improve access to these individuals who experience poorer oral health and greater unmet treatment need (16-19).

The second reason for the lower proportion of disability patients at the Adelaide clinic is likely to be a reflection of the concerted efforts made by the unit to support clinicians in the community dental clinics through its ‘Special Needs Network’. This initiative allows specialists to work in close collaboration with upskilled dentists in the community allowing patients with disabilities to be able to access care closer to home and for only more complex cases to be referred to specialists either at the Adelaide Dental Hospital or outreach clinics such as Modbury GP Plus Superclinic.

In a similar manner, the higher proportion of patients with complex medical issues treated at SNU in Adelaide may also be a result of the proximity of the Adelaide Dental Hospital to the Royal Adelaide Hospital. Although the RDHM sits close to Melbourne’s biomedical precinct, several of Melbourne’s tertiary- and quaternary-referral hospitals have their own dedicated dental clinics reducing the need to refer to external facilities.

The medical profile of patients treated at the SNU in Adelaide is relatively characteristic of patients referred for specialist dental care in Australia and internationally (11, 12, 20, 21). In addition, the number and range of comorbid medical conditions and medications across the two centres provides an indication of the complexity of managing the oral health care needs of these individuals in the context of their overall health status. 181

Of particular interest and concern are the almost 20% of patients treated at the Adelaide clinic who do not meet conventional eligibility criteria for public dental care with similar proportions reported at other hospital-based clinics in Australia (11, 12). In many cases, these individuals have access to a course of specialist dental treatment in the public dental systems in preparation for significant medical interventions but do not receive ongoing care as they do not meet financial disadvantage criteria. The chronicity and long-term side effects of many of these medical conditions and interventions, such as is the case with head and neck cancer patients, place these individuals at increased risk of dental disease and raises the question of whether these individuals are able to access appropriate and necessary dental care in the private dental sector where specialist care of this nature is limited. The anecdotal experience of specialists has been that many are referred back many years later with significant deterioration of their oral health despite care from their general dental practitioners.

The results of this study also reported for the first time on the nature of treatments completed at specialty clinics for those with special needs in Australia. Overall, although the nature of treatment provided between the two units was similar there was some variation in the procedures completed at the hospital-based clinics potentially reflecting differences in the relationships between specialty units at the respective facilities or the reluctance of other specialists to manage individuals with disabilities as has been discussed in the literature (22). The findings reinforce the need for clinicians working with individuals with special needs to be highly skilled across all areas of dentistry to be able to meet the treatment needs of their patients.

An interesting finding was the difference in number of appointments and patients seen between the two services despite having comparable numbers of full-time equivalent staff. These findings are somewhat a reflection of the nature of services provided at

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each clinic. For example, less patients are treated on general anaesthetic lists due to higher number of treatments completed in a single session and domiciliary visits require allowances for travel between patients. These factors need to be considered in funding models for dental services as conventional metrics of patient numbers and treatment codes may not reflect the additional time and complexity of managing patients with special needs.

Similarly, these differences also highlight the importance of effective use of the workforce in managing demand for services for individuals with special needs. The Adelaide clinic used a model whereby different clinicians managed the treatment for the same patient. This allowed specialists to focus on the needs of more complex patients while being supported by general dentists, oral health therapists, and dental hygienists in their relative areas of experience and scope of practice. In contrast, patients in Melbourne generally saw a single clinician for the entirety of their care. The merits of each model should be considered in the context of how access to care is impacted by the limited number of clinicians willing to treat patients with special needs but also what may be beneficial based on individual patient needs.

In addition, another interesting finding was that there was a significantly higher number of patients that failed to attend appointments at the Adelaide clinic. The existing literature suggests that non-attendance at appointments is more likely to be associated with socioeconomic disadvantage with reasons often provided including illness, dental anxiety, forgetfulness, and a lack of understanding about the importance of ongoing care (23-25). Given the degree of medical complexity of patients treated at the SNU, many of these could be viable explanations given a larger proportion of appointments were for ongoing care in comparison to more appointments being for new referrals in Melbourne. Regardless, further investigations are required to ensure attendance at this clinic was not reflective of other barriers to accessing care, such as problems with transportation, that have been proposed for individuals with special 183

needs (4). There were, however, deficiencies in the current study. These largely pertained to the period of the clinical audit being limited to one month and the restriction to only two referral centres due to other centres declining to be involved in this study. Another was the relatively high rates of incomplete medical histories within the patient records reviewed. Although this may have influenced the medical profile of patients in the current study, of greater concern was the possible impact on safety of patient care given the complexity of individuals with special needs and how vital a knowledge of their medical issues can be to their oral health and treatment provision (26).

The lack of compliance in taking medical histories potentially echoes concerns from within the special needs community that oral health professionals continue to have inadequate training and experience in managing individuals with special needs. The results of this study provide an interesting initial profile of the types of patients referred to two of the largest and most well-established specialist units in Australia for treatment and reflect, to a certain extent, how the wider dental profession defines an individual with ‘special needs’ requiring specialist level care. It reinforces the vital and important work completed by the limited specialist workforce and some of the challenges they face in meeting the health care demands of the growing group of individuals in the population with additional health care needs. Ultimately, reflecting on the profile of patients referred for specialist care in Australia should prompt other countries to consider whether their health care systems are currently meeting the needs of these individuals or that establishing a specialty in special needs dentistry is certainly part of the solution to address issues relating to access to care for the growing number of individuals with special needs in our community.

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Conclusions

This study provides an initial profile of patients with special needs referred for specialist care at two of Australia’s largest referral centres: the Integrated Special Needs Department in Melbourne and the Special Needs Unit in Adelaide. In addition to highlighting the medical complexity of this group of patients, the results also suggest that service provision models and workforce may influence referrals and access to care, particularly the use of domiciliary services for functionally-dependent older adults. Differences between the two centres raise the need to consider if, in fact, these reflect potential barriers to access of care for patients with special needs. Regardless, this study demonstrates the important role this specialty plays in managing the oral health needs of this complex group of patients.

Abbreviations

ADH: Adelaide Dental Hospital

ISND: Integrated Special Needs Department

RDHM: Royal Dental Hospital of Melbourne

SNU: Special Needs Unit

TQEH: The Queen Elizabeth Hospital

Declarations

Ethics approval and consent to participate: Ethics approval was obtained from the

Melbourne Dental School Human Ethics Advisory Group and University of Melbourne

Human Research Ethics Committee (Ethics ID 1544156), Dental Health Services Victoria

(DHSV) (ID 297), SA Health Human Research Ethics Committee (HREC Ref No.

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HREC/15/SAH/141), and Central Adelaide Local Health Network/South Australian

Dental Service Evaluation and Research Unit (LNR SSA Ref No. AU/16/4353215).

Informed consent was not obtained from individual participants as this was acknowledged to be unreasonable and withdrawal may potentially impact on the validity of the results of this study. This process was acknowledged by the relevant ethics committees with permission and support provided by each of the participating facilities.

Consent for publication: Not applicable

Availability of data and materials: The datasets used and analysed during this study are available from the corresponding author on reasonable request.

Competing interests: The authors declare that they have no competing interests.

Funding: This research was supported by the Australian Government Research

Training Program Scholarship. The funding body had not influence on study design, collection, analysis, or interpretation of data, or writing of the manuscript.

Author contributions: ML was responsible for data collection and analysis and was a major contributor in writing the manuscript. All authors (ML, SL, GB) were involved in the study design and read and approved the final manuscript.

Acknowledgments: Not applicable

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References

1. Nelson LP, Getzin A, Graham D, Zhou J, Wagle EM, McQuiston J, et al. Unmet dental needs and barriers to care for children with significant special health care needs. Pediatric Dentistry. 2011;33(1):29-36. 2. Pradhan A, Spencer A, Slade G. Factors influencing oral health of adults with physical and intellectual disabilities in various living arrangements. Australian Dental Journal. 2007;52(S4). 3. Pradhan A, Slade GD, Spencer AJ. Factors influencing caries experience among adults with physical and intellectual disabilities. Community Dentistry and Oral Epidemiology. 2009;37(2):143-54. 4. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 5. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 6. New Zealand Dental Association. Specialisation 2013 [cited 2 May 2015]. Available from: https://www.nzda.org.nz/pub/index.php?id=337&no_cache=1. 7. Dental Board of Australia. List of specialties [Available from: www.dentalboard.gov.au/.../default.aspx?record=WD10%2F3238&dbid=AP&chk sum=hXwmbYjUdcXv23v2lFcC3w%3D%3D. 8. Borromeo G, Bramante G, Betar D, Bhikha C, Cai Y, Cajili C. Transitioning of special needs paediatric patients to adult special needs dental services. Australian Dental Journal. 2014;59(3):360-5. 9. Royal Australasian College of Dental Surgeons. Specialist Dental Practice 2014 [cited 2 May 2015]. Available from: http://www.racds.org/RACDSNEW_Content/Education/Specialist_Dental_Practic e.aspx. 10. Rohani M, Calache H, Borromeo M. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia. Australian Dental Journal. 2017;62(2):173-9. 11. Lim MAWT, Borromeo GL. Patient referrals to special needs dental units in Tasmania, Australia. Journal of Disability and Oral Health. 2017;18(3):87-94. 12. Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences. 2017;6(6):123-31. 13. World Health Organization. ICD-10 Version: 2016: World Health Organization; 2016 [cited 5 June 2016]. Available from: http://apps.who.int/classifications/icd10/browse/2016/en. 14. World Health Organization Collaborating Centre for Drug Statistics Methodology. ATC/DDD Index 2016 Oslo, Norway: Norwegian Institute of Public Health; 2016 [updated 16 December 2015; cited 5 June 2016]. Available from: http://www.whocc.no/atc_ddd_index/.

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15. Lim MAWT, Borromeo GL. The use of general anesthesia to facilitate dental treatment in adult patients with special needs. Journal of Dental Anesthesia and Pain Medicine. 2017;17(2):91-103. 16. Fiske J, Lewis D. The Development of Standards for Domiciliary Dental Care Services: Guidelines and Recommendations. Gerodontology. 2000;17(2):119-22. 17. Silva M, Hopcraft M, Morgan M. Dental caries in Victorian nursing homes. Australian Dental Journal. 2014;59(3):321-8. 18. Chalmers J, Carter K, Fuss J, Spencer A, Hodge C. Caries experience in existing and new nursing home residents in Adelaide, Australia. Gerodontology. 2002;19(1):30-40. 19. Chalmers JM. Oral health promotion for our ageing Australian population. Australian Dental Journal. 2003;48(1):2-9. 20. Monteserín-Matesanz M, Esparza-Gómez GC, García-Chías B, Gasco-García C, Cerero-Lapiedra R. Descriptive study of the patients treated at the clinic “Integrated Dentistry for Patients with Special Needs” at Complutense University of Madrid (2003-2012). Medicina oral patologia oral y cirugia bucal. 2015;20(2):e211. 21. Ahmad MS, Shafie NE, Redhuan TM, Mokhtar IW. Referral pattern and treatment needs of patients managed at a Malaysian special care dentistry clinic. Journal of International Oral Health. 2019;11(5):299. 22. Yap E, Parashos P, Borromeo G. Root canal treatment and special needs patients. International Endodontic Journal. 2015;48(4):351-61. 23. Listl S, Moeller J, Manski R. A multi-country comparison of reasons for dental non-attendance. European Journal Oral Sciences. 2014;122(1):62-9. 24. Herrick J, Gilhooly MLM, Geddes DAM. Non-attendance at periodontal clinics: forgetting and administrative failure. Journal of Dentistry. 1994;22(5):307-9. 25. Collins J, Santamaria N, Clayton L. Why outpatients fail to attend their scheduled appointments: a prospective comparison of differences between attenders and non-attenders. Australian Health Review. 2003;26(1):52-63. 26. De Angelis A, Chambers I, Hall G. The accuracy of medical history information in referral letters. Australian Dental Journal. 2010;55(2):188-92.

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Oral health of patients with special needs requiring treatment under general anaesthesia

Authors: Mathew AWT Lim and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim and Mina Borromeo

Article status: Published in Journal of Intellectual and Developmental Disability, 2018

Lim MAWT, Borromeo GL. Oral health of patients with special needs requiring treatment under general anaesthesia. Journal of Intellectual and Developmental Disability 2018 May 29: 1-6.

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Oral health of patients with special needs requiring treatment under general anaesthesia

Abstract

Background: General anaesthesia remains a vital modality to facilitate dental treatment for patients with special needs but there is limited literature to describe the types of patients requiring this form of care and the treatment they receive.

Method: A cross-sectional clinical audit was conducted of patients treated under general anaesthesia at the Day Surgery Unit of the Royal Dental Hospital of Melbourne during August 2015.

Results: The majority of patients had an intellectual disability and were referred due to their inability to tolerate conventional dental treatment. These patients demonstrated high levels of treatment need requiring an average of 2 fillings and 6 extractions.

Conclusions: Although these results demonstrate the value of general anaesthesia in treating patients with intellectual disabilities, the level of treatment need identified raises concerns about current approaches to oral health for this cohort. Greater efforts are required towards preventive oral care for patients with special needs.

Keywords: dental anxiety; dental treatment; general anaesthesia, intellectual disability; oral health; special needs dentistry

Introduction

Patients with special needs encompass a diverse group including those with intellectual and physical disabilities, psychiatric conditions, and complex medical conditions (1, 2). In many circumstances, these factors do not occur in isolation but rather with several compounding factors thereby complicating the manner in which

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they receive oral health care. As a result, special techniques or treatment modalities are often required to manage their oral health (1, 2).

The Integrated Special Needs Department at the Royal Dental Hospital of Melbourne is a unit that specialises in the care of these patients. The unit employs individuals who specialise in the care of these individuals and, in addition, has specialised equipment and access to dedicated general anaesthesia services.

General anaesthesia (GA) is a medically-induced state involving loss of consciousness in order to facilitate complex procedures (3, 4). Medications are used to produce amnesia, analgesia, muscle paralysis, and sedation and allow surgical procedures to be performed that would otherwise likely cause significant pain, potential physiological exacerbations, and result in unpleasant memories of the experience (4). In dentistry, GA is most commonly used to facilitate the removal of wisdom teeth but has also been described to facilitate the treatment of patients with special needs, in particular, those with intellectual disabilities that are unable to tolerate conventional dental treatment (3, 5, 6). Despite this, little has been published about the types of treatments these individuals receive.

This pilot study aims to review the types of patients with special needs treated under GA at the Royal Dental Hospital of Melbourne Day Surgery Unit and the treatment that they received. It is hypothesised that patients unable to tolerate conventional dental treatment due to lack of compliance or anxiety issues are most likely to be treated under GA. Additionally, the treatment provided will reflect significant levels of unmet treatment need.

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Material and methods

As part of a clinical audit of patients treated by the Integrated Special Needs Department of the Royal Dental Hospital of Melbourne, the records of all special needs patients treated at the Day Surgery Unit between August 1, 2015 and August 30, 2015 were reviewed. This cross-sectional audit was completed by a single researcher and included all appointments at the Day Surgery Unit during the study period in order to determine which patients met the inclusion criteria. For the purposes of this study all patients on dedicated Special Needs Dentistry lists were included as well as any patients treated on Community dentistry, Paediatric dentistry, or Oral surgery lists that had been referred from or previously treated at the Integrated Special Needs Department. The review of records for these patients involved patient demographics (gender, date of birth, residential postcode), ability to consent, health care and pensioner card status, referral details, medical history, including medical diagnoses and current medications provided by the patient’s medical practitioner, and dental treatment completed.

A standardised data collection sheet was developed by the researchers for the purpose of this study. Data were recorded on an Excel spreadsheet (Microsoft Corporation, Seattle WA, USA) by a single investigator. Medical conditions and medications were recorded using the World Health Organization International Classification of Disease 10 (ICD-10) and the Anatomical Therapeutic Chemical and Defined Daily Dose (ATC/DDD) classifications (7, 8). Residential postcode was grouped using the Australian Statistical Geography Standard (ASGS) Remoteness Areas Classification (9). Dental treatments were categorised based on item numbers recorded by the treating clinician. The Australian Schedule of Dental Services and Glossary (11th Edition) was used to define and appropriately categorise treatments completed into these treatment groups (10). SPSS Statistics Version 23 (IBM Inc, Armonk NY, USA) was used for descriptive analysis of the data.

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Ethics approval was obtained from the University of Melbourne Human Research Ethics Committee (Ethics ID 1544156) and Dental Health Services Victoria (DHSV) (ID 297).

Results

Amongst the 283 patients who received treatment at the Royal Dental Hospital of Melbourne Day Surgery Unit during the month of August 2015, 22 had special needs. Despite representing only 7.8% of the patients treated, allocated general anaesthetic sessions represented 12.4% of the total theatre time for that month. Surgical time for individual patients ranged from 60 to 150 minutes with an average of 103.2 minutes.

The demographic and treatment details of these patients are summarised in Table 1. The majority were referred from specialists in Special Needs Dentistry (45.5%) and general dentists (45.5%) with the remainder (9.0%) referred from training specialists. Insufficient compliance for treatment in the dental chair was the most common reason for referral. Only one of the patients with a history of intellectual disability or behavioural problems was able to self-consent for treatment and just under half (46.7%) were able to tolerate a pre-operative assessment examination in the dental surgery.

The treatments provided for these patients are also described in Table 1. Most patients (63.6%) were only able to tolerate having radiographs while under anaesthesia. The majority of patients (81.8%) had a dental clean completed with 83.3% also requiring some form of other treatment; on average, requiring 2.2 fillings and 5.6 extractions.

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Table 1. Summary of demographics and treatment details of special needs patients treated at the Royal Dental Hospital of Melbourne Day Surgery Unit.

Gender Age Residence Consent Reason Medical history EUA Xray Clean Filling Extraction Male 27 M Family Behaviour ID, ASD, Epilepsy Y 5 Y 3 1 Male 63 IR Other Behaviour ID, Epilepsy Y 5 N 0 0 Male 49 M Family Behaviour ID, OCD, Deaf, Epilepsy, Y 6 Y 0 4 Cerebral palsy, Hepatitis B Female 54 M Family Behaviour ID N 0 Y 0 2 Male 39 M Family Behaviour ID, Down Syndrome, Y 6 Y 0 9 Osteoarthritis Male 31 M Family Behaviour Cerebral palsy, GORD N 4 Y 4 7 Female 30 M Self Medical Hepatitis C, Bipolar N 0 N 0 3 affective disorder, Anxiety Male 29 M Self Phobia High cholesterol, N 5 Y 6 14 Depression, HIV, Scoliosis, Osteoarthritis, Hepatitis C, Kidney stone, Herpes simplex, Fibromyalgia Female 64 M Family Behaviour Fragile X syndrome, Y 5 Y 1 3 Epilepsy Female 39 IR Self Medical Asthma, TIA N 2 Y 5 4 Female 20 M Self Medical Depression, N 0 N 0 30 Osteoporosis, Autoimmune hepatitis Male 52 M Family Behaviour ID, Epilepsy N 9 Y 3 0 Female 59 M Family Behaviour ID, Hypertension, Y 0 N 0 17 Ischaemic heart disease, Asthma, GORD, Osteoarthritis, Type 2 Diabetes mellitus, Non- alcoholic steatohepatitis, Schizophrenia Male 51 IR Family Behaviour ID, Epilepsy Y 5 Y 0 0 Male 36 M Family Behaviour ASD, GORD N 3 Y 3 3 Male 30 M Family Behaviour Chromosomal N 4 Y 0 0 abnormality, ID Female 24 M Self Phobia Dental phobia, Y 0 Y 10 6 Anaemia, Bipolar affective disorder, Asthma Male 56 M Family Behaviour ID, Hypertension, Y 7 Y 0 0 Scoliosis Female 35 M Family Behaviour Chromosomal N 5 Y 3 1 abnormality, ID Female 54 M Family Behaviour ID N 0 Y 4 1 Female 38 M Self Phobia Hypertension, Sleep N 0 Y 0 11 apnoea, PTSD, Depression Female 30 M Self Behaviour Chromosomal N 0 Y 6 6 abnormality, ID

ASD: Autism spectrum disorder, EUA: Examination under anaesthesia, GORD: Gastroesophageal reflux disease, ID: Intellectual disability, IR: Inner regional, M: Metropolitan, OCD: Obsessive compulsive disorder, PTSD: Post-traumatic stress disorder, TIA: Transient ischaemic attack 194

Discussion

This study provides an initial profile of the types of patients with special needs in Australia who require dental treatment under GA with the majority of these patients having an intellectual disability. This was consistent with the available international literature and suggested indications for the use of GA in dentistry (3, 5, 11-17).

In addition, although previous Australian studies have demonstrated the extent of unmet treatment need in those with intellectual and physical disabilities, the current study quantified the degree of these unmet needs in terms of actual treatment received (18, 19). Worryingly, the extent of dental disease was so significant in the current cohort that only five patients in the sample did not have a tooth extracted during their GA procedure and only four did not require any treatment other than scaling to remove dental plaque and calculus.

These results and the available literature indicate that the extent of untreated oral diseases is being significantly underestimated for those with disabilities, and more so for those who are non-verbal or demonstrate care resistant behaviours (20). Although it may be expected that patients receiving treatment under GA would have higher treatment needs, the impact of lack of cooperation was identified in our study with the high proportion of patients who were unable to accept simple procedures, such as an oral examination or dental x-rays, prior to the anaesthetic procedure.

Many patients with disabilities rely heavily on their carers to provide assistance with activities of daily living, such as basic oral hygiene, and these can be complicated by lack of cooperation and care resistant behaviours. However, levels of oral disease have also been considered to be a reflection of the lack of training and awareness of the importance of oral hygiene amongst carers (21, 22).

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Programs to promote the importance of oral care amongst carers have been shown to significantly improve both oral hygiene and oral health (23, 24). Likewise, performing regular oral care can prevent the development of care resistant behaviours (25). This conditioning may improve compliance for daily oral care and increase the ability to complete simple oral examinations or preventive procedures. Although there has been significant advocacy from members of the dental profession for greater training of carers, this lack of awareness remains a significant barrier to the improving the oral health of patients with special needs (26, 27).

Unfortunately, this lack of awareness can also impact on these individuals receiving timely dental care with visits to the dentist considered a low priority. Given that individuals with disabilities often rely on their carers to organise appointments with health professionals based on their perceived needs, this has led to a significant underestimation of the levels of dental disease and resulted in these individuals being left with untreated decay and periodontal disease. This has been complicated by carers largely being unsure about the impacts of oral disease on care recipients, particularly for individuals who were non-verbal (20). Often, by the time these issues are symptomatic they may be quite advanced necessitating more invasive dental treatments as shown in our results.

Most certainly, barriers also exist within the dental profession with many general dentists feeling uncomfortable with treating patients that demonstrate some lack of compliance towards conventional dental care (28). An unwillingness to treat patients with special needs can result in significant waiting times for both specialist care and GA procedures during which the decay or periodontal disease have progressed to the point where extractions are the only viable option. The question remains: are we

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willing to consider this the standard of care for the oral health for individuals with intellectual disabilities in this country given that these oral diseases are preventable?

Despite these challenges, simple and regular visits to an oral health professional should be considered the foundation of managing the oral health of these patients. These visits may increase patient familiarity with oral care and facilitate simple preventive measures. Likewise, more early recognition of oral disease may enable preventive measure to be employed or and more effective use of resources such as GA facilities.

There is no question that GA will remain an essential and useful modality for treating patients who are unable to tolerate conventional dental treatment. For some, it may be the only way to complete necessary oral health care, however, it must be used judiciously.

Every GA procedure comes with risks and adverse effects and these are reported to be higher in those with disabilities and medical comorbidities (29-33). In particular, those with cerebral palsy experience the highest rates of complications with most involving airway issues (29). Likewise, many of these patients have multiple medical comorbidities which may impact on functional reserve and increase the rate of complications (34-36). Given that some patients may only be able to accept dental treatment through this modality, greater research is required to understand the impact of repeated procedures and whether any increased risk is associated with its use as a means of routine assessment and dental treatment (6, 33).

Additionally, further research and experience is required in Australia to consider the appropriateness of other sedation modalities that may be able to facilitate simpler

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procedures. Relative analgesia, using nitrous oxide, has a long and successful history for managing those with special needs and is currently widely used to manage dental anxiety (37-40). However, greater consideration should be given to other techniques, such as the use of intranasal Midazolam, and how it may be used to reduce the need for GA procedures in those with special needs (41-43).

For many clinicians who provide care to patients with special needs, treatment under GA is not a panacea for their oral health needs. Although it may form an essential part of any solution, the need for extensive treatment essentially represents a failure to meet the ongoing needs of these patients. Greater efforts are required at all levels to ensure that these individuals attain ideal levels of oral health that translate to optimal oral function and absence of pain. These should include initiatives that extend from the home to the dental surgery and include greater carer training in provision of basic oral care.

Conclusion

This cross-sectional audit of treatment provided under general anaesthesia to patients with special needs at the Royal Dental Hospital of Melbourne confirmed that this modality is essential to conducting dental procedures for those unable to accept treatment in the dental chair. Many of these patients had intellectual disabilities, were unable to self-consent for procedures, or tolerate a dental assessment prior to the procedure. Worryingly, the results demonstrated significant levels of treatment need with patients often requiring a clean as well as several fillings and extractions.

Although the results reaffirm the importance of general anaesthesia as a treatment modality in the oral care of patients with special needs, it raises questions about whether the current care provided is acceptable. Greater resources and focus should

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be placed on preventing the need for these services rather than settling on them as a solution. Likewise, greater advocacy is required to ensure optimal oral health is possible for all individuals with special needs within our community for the sake of their general well-being and quality of life.

References

1. Dental Board of Australia. List of specialties. [cited 2 May 2015]. Available from: www.dentalboard.gov.au/.../default.aspx?record=WD10%2F3238&dbid=AP&chk sum=hXwmbYjUdcXv23v2lFcC3w%3D%3D. 2. Royal Australasian College of Dental Surgeons. Specialist Dental Practice 2014 [cited 2 May 2015]. Available from: http://www.racds.org/RACDSNEW_Content/Education/Specialist_Dental_Practic e.aspx. 3. Dougherty N. The dental patient with special needs: A review of indications for treatment under general anesthesia. Special Care in Dentistry. 2009;29(1):17-20. 4. Press CD. General Anesthesia 2015 [updated 30 November 2015; cited 17 April 2017]. Available from: http://emedicine.medscape.com/article/1271543- overview. 5. Glassman P. A review of guidelines for sedation, anesthesia, and alternative interventions for people with special needs. Special Care in Dentistry. 2009;29(1):9-16. 6. Lim MAWT, Borromeo GL. The use of general anesthesia to facilitate dental treatment in adult patients with special needs. Journal of Dental Anesthesia and Pain Medicine. 2017;17(2):91-103. 7. World Health Organization. ICD-10 Version: 2016: World Health Organization; 2016 [cited 5 June 2016]. Available from: http://apps.who.int/classifications/icd10/browse/2016/en. 8. World Health Organization Collaborating Centre for Drug Statistics Methodology. ATC/DDD Index 2016 Oslo, Norway: Norwegian Institute of Public Health; 2016 [updated 16 December 2015; cited 5 June 2016]. Available from: http://www.whocc.no/atc_ddd_index/. 9. Australian Bureau of Statistics. 1270.0.55.005 Australian Statistical Geography Standard (ASGS): Volume 5-Remoteness Structure, July 2011 Canberra ACT, Australia: Australian Bureau of Statistics; 2013 [updated 18 March 2016; cited 5 June 2016]. Available from: http://www.abs.gov.au/ausstats/[email protected]/mf/1270.0.55.005. 10. Australian Dental Association. The Australian Schedule of Dental Services and Glossary (11th Edition). St Leonards NSW, Australia: Australian Dental Association; 2016.

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11. Hennequin M, Faulks D, Roux D. Accuracy of estimation of dental treatment need in special care patients. Journal of Dentistry. 2000;28(2):131-6. 12. Hulland S, Sigal MJ. Hospital‐based dental care for persons with disabilities: a study of patient selection criteria. Special Care in Dentistry. 2000;20(4):131-8. 13. Lim MAWT, Borromeo GL. Patient referrals to special needs dental units in Tasmania, Australia. Journal of Disability and Oral Health. 2017;18(3):87-94. 14. Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences. 2017;6(6):123-31. 15. Prabhu NT, Nunn JH, Evans D, Girdler N. Development of a screening tool to assess the suitability of people with a disability for oral care under sedation or general anesthesia. Special Care in Dentistry. 2008;28(4):145-58. 16. Savanheimo N, Sundberg SA, Virtanen JI, Vehkalahti MM. Dental care and treatments provided under general anaesthesia in the Helsinki Public Dental Service. BMC Oral Health. 2012;12(1):1. 17. Voytus ML. Evaluation, scheduling, and management of dental care under general anesthesia for special needs patients. Dental Clinics of North America. 2009;53(2):243-54. 18. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 19. Pradhan A, Spencer A, Slade G. Factors influencing oral health of adults with physical and intellectual disabilities in various living arrangements. Australian Dental Journal. 2007;52(S4). 20. Pradhan A. Oral health impact on quality of life among adults with disabilities: carer perceptions. Australian Dental Journal. 2013;58(4):526-30. 21. Cumella S, Ransford N, Lyons J, Burnham H. Needs for oral care among people with intellectual disability not in contact with Community Dental Services. Journal of Intellectual Disability Research. 2000;44(1):45-52. 22. Sumi Y, Nakamura Y, Nagaosa S, Michiwaki Y, Nagaya M. Attitudes to oral care among caregivers in Japanese nursing homes. Gerodontology. 2001;18(1):2-6. 23. Frenkel H, Harvey I, Newcombe RG. Improving oral health in institutionalised elderly people by educating caregivers: a randomised controlled trial. Community Dentistry and Oral Epidemiology. 2001;29(4):289-97. 24. Shekar BC, Reddy C, Manjunath B, Suma S. Dental health awareness, attitude, oral health-related habits, and behaviors in relation to socio-economic factors among the municipal employees of Mysore city. Annals of Tropical Medicine and Public Health. 2011;4(2):99. 25. Jablonski RA, Therrien B, Mahoney EK, Kolanowski A, Gabello M, Brock A. An intervention to reduce care‐resistant behavior in persons with dementia during oral hygiene: a pilot study. Special Care in Dentistry. 2011;31(3):77-87. 26. Chalmers JM, Pearson A. Oral hygiene care for residents with dementia: a literature review. Journal of Advanced Nursing. 2005;52(4):410-9.

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27. Chalmers JM, Hodge C, Fuss JM, Spencer AJ. The Adelaide dental study of nursing homes 1998. 2000. 28. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 29. Boynes SG, Moore PA, Lewis CL, Zovko J, Close JM. Complications associated with anesthesia administration for dental treatment in a special needs clinic. Special Care in Dentistry. 2010;30(1):3-7. 30. Caputo AC. Providing deep sedation and general anesthesia for patients with special needs in the dental office‐based setting. Special Care in Dentistry. 2009;29(1):26-30. 31. Enever G, Nunn J, Sheehan J. A comparison of post‐operative morbidity following outpatient dental care under general anaesthesia in paediatric patients with and without disabilities. International Journal of Paediatric Dentistry. 2000;10(2):120- 5. 32. Loyola-Rodriguez JP, Aguilera-Morelos AA, Santos-Diaz MA, Zavala-Alonso V, Davila-Perez C, Olvera-Delgado H, et al. Oral rehabilitation under dental general anesthesia, conscious sedation, and conventional techniques in patients affected by cerebral palsy. Journal of Clinical Pediatric Dentistry. 2004;28(4):279-84. 33. Messieha Z. Risks of general anesthesia for the special needs dental patient. Special Care in Dentistry. 2009;29(1):21-5. 34. Hosking M, Lobdell C, Warner M, Offord K, Melton L. Anaesthesia for patients over 90 years of age. Outcomes after regional and general anaesthetic techniques for two common surgical procedures. Anaesthesia. 1989;44(2):142-7. 35. Jin F, Chung F. Minimizing perioperative adverse events in the elderly†. British Journal of Anaesthesia. 2001;87(4):608-24. 36. Pedersen T, Eliasen K, Henriksen Ea. A prospective study of mortality associated with anaesthesia and surgery: risk indicators of mortality in hospital. Acta Anaesthesiologica Scandinavica. 1990;34(3):176-82. 37. Collado V, Hennequin M, Faulks D, Mazille M-N, Nicolas E, Koscielny S, et al. Modification of behavior with 50% nitrous oxide/oxygen conscious sedation over repeated visits for dental treatment a 3-year prospective study. Journal of Clinical Psychopharmacology. 2006;26(5):474-81. 38. Faulks D, Hennequin M, Albecker‐Grappe S, Manière MC, Tardieu C, Berthet A, et al. Sedation with 50% nitrous oxide/oxygen for outpatient dental treatment in individuals with intellectual disability. Developmental Medicine & Child Neurology. 2007;49(8):621-5. 39. Hennequin M, Manière M-C, Albecker-Grappe S, Faulks D, Berthet A, Tardieu C, et al. A prospective multicentric trial for effectiveness and tolerance of a N2O/O2 premix used as a sedative drug. Journal of Clinical Psychopharmacology. 2004;24(5):552-4. 40. Stanley W, Drum M, Nusstein J, Reader A, Beck M. Effect of nitrous oxide on the efficacy of the inferior alveolar nerve block in patients with symptomatic irreversible pulpitis. Journal of Endodontics. 2012;38(5):565-9.

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41. Burstein AH, Modica R, Hatton M, Gengo FM. Intranasal midazolam plasma concentration profile and its effect on anxiety associated with dental procedures. Anesthesia Progress. 1996;43(2):52-7. 42. Fukuta O, Braham R, Yanase H, Kurosu K. The sedative effects of intranasal midazolam administration in the dental treatment of patients with mental disabilities. Part 2: optimal concentration of intranasal midazolam. The Journal of Clinical Pediatric Dentistry. 1993;18(4):259-65. 43. Manley M, Ransford N, Lewis D, Thompson S, Forbes M. Retrospective audit of the efficacy and safety of the combined intranasal/intravenous midazolam sedation technique for the dental treatment of adults with learning disability. British Dental Journal. 2008;205(2):E3-E.

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Dental treatment for patients with special needs provided by domiciliary dental services

Authors: Mathew AWT Lim and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim and Mina Borromeo

Article status: Submitted for publication to Journal of Dental Science, Oral and Maxillofacial Research on 16 December 2020

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Dental treatment for patients with special needs provided by domiciliary dental services

Abstract

Objective: To determine a profile of the types of patients treated by domiciliary dental services and the nature of treatments these patients receive.

Background data: Developed countries are faced with the challenges of ageing populations with individuals living for longer with multiple medical comorbidities. As these individuals become more functionally dependent, it is more difficult for them to access conventional health care. In order to adapt to the needs of this growing group, health care systems, including dental services, have implemented initiatives to adapt to their needs, such as domiciliary dental services, in an attempt to increase access to health care.

Materials and methods: A retrospective review was conducted of all patient appointments conducted by the domiciliary service operated by the Integrated Special Needs Department (ISND) at the Royal Dental Hospital of Melbourne for the month of August 2015.

Results: Patients treated by domiciliary dental services were generally older than those treated at dental hospital facilities and most were referred from residential aged care facilities. The most common treatments received were examinations and procedures associated with denture fabrication.

Conclusions: These results demonstrate the importance of domiciliary dental services to access of care for functionally-dependent older adults.

Keywords: Dental care for disabled, Domiciliary, Geriatric dentistry, Dental treatment

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Introduction

The success of modern medicine has led to the need for health care systems to adapt to the changing needs of the population. In particular, many developed countries are faced with the challenges of ageing populations. In Australia there are a growing proportion of older adults with multiple medical comorbidities and these individuals are living for longer in the community before moving into residential aged care facilities. On a smaller scale, these same problems are being experienced in patients with special needs; many of whom will outlive the parents who act as their main carers. These individuals will require transition to replacement parental caring roles in supported residential facilities. The growing functional dependence of these adults can significantly impact on their ability to access health care and, as a result, health care systems will need to adapt to these changing demands.

One way in which oral health care providers have attempted to adapt to these changing needs has been domiciliary dental services. Domiciliary dental care aims to provide dental care to individuals who may find it difficult or impossible to access normal dental services (1). Although these services have largely catered for patients in residential aged care facilities it should not be seen as confined to this group but rather any individuals that are unable or have difficulty in attending a dental clinic. Treatment in this setting is accomplished by providing dental treatment at their place of residence, or a location convenient to the patients with suitable requirements, using portable equipment and materials (2).

There are a growing number of public and private domiciliary dental services operating in Australia facilitating greater access to dental care for individuals that are homebound, in supported residential facilities, or unable to attend a conventional dental clinic for other reasons such as insufficient supports to enable travel to a dental clinic or complicating factors, including psychiatric, anxiety, or behavioural issues,

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which may make treatment more amenable away from the conventional dental setting. In Victoria, the largest public domiciliary dental service is operated by the Royal Dental Hospital of Melbourne. The service is provided by clinicians affiliated with the hospital’s Integrated Special Needs Department and includes specialists in special needs dentistry, post-graduate specialists-in-training in special needs dentistry, general dental practitioners, and dental prosthetists. Although operated by the Dental Health Services Victoria as a public dental service, it is available to all patients. Likewise, unlike many other states, this single service coordinates and provides all domiciliary dental care across the state.

Thus far little is known about the types of patients receiving their oral health care through domiciliary dental services in Australia and the treatment that they receive. The international literature is also limited in the reporting of utilisation of these services (3). The present study aims to begin to address these deficiencies by reviewing the domiciliary dental service provided by the Royal Dental Hospital of Melbourne Integrated Special Needs Department. In particular, patient demographics and treatment details will be analysed to develop a better understanding of current service utilisation and treatment provision. It is hypothesised that patient demographic will reflect the growing needs of these services amongst functionally-dependent older adults in residential aged care facilities and that treatment will reflect the significant unmet treatment needs of these individuals.

Material and Methods

A cross-sectional review was conducted of all patient appointments with the domiciliary service operated by the Integrated Special Needs Department (ISND) at the Royal Dental Hospital of Melbourne between August 1, 2015 and August 30, 2015. The review of records included details of patient demographics (gender, date of birth, residential postcode), consent status, health care and pensioner card status, source of

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referral, reason for referral, and medical history, including medical conditions and current medications. A single researcher was responsible for the review of records and data collection.

Data were recorded on an Excel spreadsheet (Microsoft Corporation, Seattle WA, USA) using a standardised data collection sheet developed by the researchers. Medical conditions and medications were recorded using the World Health Organization International Classification of Disease 10 (ICD-10) and the Anatomical Therapeutic Chemical and Defined Daily Dose (ATC/DDD) classifications (4, 5). Residential postcode was grouped using the Australian Statistical Geography Standard (ASGS) Remoteness Areas Classification 2011 (6). SPSS Statistics Version 23 (IBM Inc, Armonk NY, USA) was used for descriptive analysis of the data. Ethics approval was obtained from the University of Melbourne Human Research Ethics Committee (Ethics ID 1544156) and Dental Health Services Victoria (DHSV) (ID 297).

Results

The domiciliary service provided 236 patient appointment during the month of August 2015 accounting for just over one third (33.8%) of all appointments with the Integrated Special Needs Department in that month. The demographics of patients treated by the domiciliary services are provided in Table 1.

Although gender distribution, remoteness of residence, and eligibility for public dental care were relatively comparable between patients treated at the Integrated Special Needs Department and on the domiciliary service, other patient characteristic differed quite significantly. The mean age of patients treated by the domiciliary service was 73.44 years (Range 19-99) and age distribution was skewed towards those in the oldest

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age group with just under three quarters of all patients (73.2%) aged 65 years and older.

Patient details Domiciliary N (%) RDHM N (%) Gender Male 106 (44.9) 226 (50.6) Age groupsa <25 years 2 (0.8) 76 (17.0) 25-34 years 3 (1.3) 60 (13.4) 35-44 years 5 (2.1) 75 (16.8) 45-54 years 25 (10.6) 84 (18.8) 55-64 years 29 (12.3) 75 (16.8) 65-74 years 37 (15.7) 39 (8.47) >74 years 135 (57.2) 38 (8.5) Ability to self-consent Yes 76 (32.2) 249 (55.7) Remoteness of residenceb Metropolitan 209 (88.6) 350 (78.3) Regional 27 (11.4) 97 (21.7) Eligibility for public dental care Not eligible 16 (6.8) 4 (0.9) Eligible 214 (90.6) 442 (98.9) DVA 6 (2.5) 1 (0.2) Referral source Medical professional and allied health professionals 17 (7.8) 107 (23.9) Oral health professional 23 (10.5) 200 (44.7) Supported residential facility 111 (50.7) 41 (9.2) Carers and family 65 (29.7) 70 (15.7) Self-referral 3 (1.4) 9 (2.0) Reason for referral Behavioural problem or intellectual disability 14 (6.4) 158 (35.3) Psychological problems 5 (2.3) 118 (26.4) Physical disability 1 (0.5) 16 (3.6) Medical condition or medication 10 (4.6) 112 (25.1) Domiciliary care 186 (84.9) 21 (4.7) Second opinion 3 (1.4) 2 (4.5) a Age categories were based on those used by the World Health Organization (7). b Residential postcodes were categorised using the ASGS Remoteness Areas Classification 2011 (6).

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Only 32.2% of patients were able to self-consent for procedures, almost half the rate as treated at the Integrated Special Needs Department, with most having consent provided by a family member (61.4%) and a small percentage (0.8%) had other medical power of attorney arrangements. 2.5% of patients had no substitute decision maker and thus requiring the treating clinician to provide notification of treatment to the Office of Public Advocate.

Most referrals (84.9%) were specifically for domiciliary dental care with these completed primarily by nursing staff at residential facilities (50.7%), including supported residential services and residential aged care facilities. 29.7% of referrals were also from carers and family. This was in contrast to the tendency for referrals to the Integrated Special Needs Department to come from health professionals. Oral health professionals were more likely to refer patients to the domiciliary service than general and allied health practitioners. Reasons for referral were similar to those for the Integrated Special Needs Department when specific referral for domiciliary dental care was excluded.

Most patients (80.1%) had only a single appointment with the domiciliary service during the review period. However, 22 patients had two appointments and 4 patients had 3 appointments. The majority of appointments were with dentists (58.9%) followed by prosthetists (29.2%), specialists-in-training (5.9%), and specialists (5.5%).

The dental treatments completed on domiciliary visits are reported in Table 2. 16.1% of all appointments were cancelled by either the patient or clinician. Most patients (43.1%) received only an examination. The remainder of appointments were equally split between receipt of dental treatment, including fillings (31.6%), cleans (21.1%), and dental extractions (47.4%), or denture fabrication procedures.

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The treatments performed by clinician type are shown in Table 3. The majority of denture work was completed by prosthetists. Specialists had the highest rate of appointment cancellations (23.1%) but were also the most likely to perform treatment during an appointment.

Table 2. Dental treatment completed on domiciliary visits conducted by the Integrated Special Needs Department, Royal Dental Hospital of Melbourne.

Treatment completed Number of appointments (%) Examination Only 85 (36.0) Dental treatment 56 (23.7) Periodontal therapy 17 (7.2) Restorative treatment 11 (4.7) Combination of periodontal and restorative treatment 1 (0.4) Extractions 27 (11.4) Denture fabrication procedures 56 (23.7) Cancelled appointments 38 (16.1) Invalid 1 (0.4) Total 236 (100.0)

Table 3. Treatment completed on domiciliary visits by clinician type.

Clinician type Examination Dental Dentures Cancellation Treatment SND Specialist 4 6 0 3 SND Specialist-in-Training 9 5 0 0 Dentist 65 35 3 26 Dental prosthetist 8 0 52 9

Discussion

Australia, like many developed countries, is faced with the challenges of an ageing population and adapting existing health care services to the needs of the growing proportion of older individuals living with chronic medical conditions and disabilities. Australians now have a life expectancy of 82.4 years; an increase of approximately three decades over the last century (8, 9). In 2014, Australians aged 65 years and older

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represented 15% of the overall population compared to just 8% in 1964 (10). Furthermore, 270,559 of these individuals, or 7.8% of all Australians aged 65 years and older, were living in residential aged care facilities (11).

Domiciliary dental care has been proposed as a way in which dental services may be adapted to the needs of functionally-dependent older people living in residential aged care facilities or in the community. This model of care involves providing dental treatment at the patient’s permanent or temporary place of residence using portable equipment and materials (2). As a result, these services aim to remove barriers to access of care that exist for individuals for whom it may be impossible, unreasonable, or impractical to receive conventional dental care at a dental clinic (1).

This study aimed to review the utilisation of the domiciliary dental service provided by the Integrated Special Needs Department of the Royal Dental Hospital of Melbourne to better understand the types of patients being treated and the treatments they were receiving. Despite the growing availability of both private and public domiciliary services, there has been little published in the literature regarding specifically the provision of these services (12, 13). Likewise, poor awareness of the availability of these services has been reported in the literature (1).

Our results reflected the fact that these services were largely aimed at the functionally-dependent older people in nursing homes. Despite the sample population having ages ranging from 19 to 99 years, the mean age of patients treated was 73.4 years and just under three quarters of the sample was aged 65 years or older with over half (57.2%) aged over 74 years. Comparing this to the demographics of patients treated at the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne demonstrated the ability of these services to provide increased access to care to the frail elders. Although residence type was not recorded, 50.7% of patients 211

with appointments were originally referred by staff at a residential facility which included supported residential care and aged care facilities.

Although this form of dental care is commonly associated with use amongst patients living in residential aged care facilities, it is most certainly not confined to this population. Domiciliary dental services may also be relevant for individuals with physical disabilities that pose difficulties with mobility or transportation, those with psychiatric problems, such as agoraphobia, or may involve provision of dental treatment at hospitals, palliative care units, or facilities for the homeless (1).

Even though the vast majority of patients in our sample were referred specifically for domiciliary care, the remaining 15.1% provided examples of individuals for whom it was deemed more appropriate or amenable for care to be provided in a domiciliary setting. Review of the original referral reasons for these patients showed 6.4% were originally referred due to behavioural problems or developmental delay, 4.6% because of concerns about medical conditions that may impact on care, 2.3% because of psychological issues, and 0.5% due to physical impairments.

Domiciliary dental care can offer several advantages for this group of patients. In addition to reducing reliance on carer and transport arrangements, it has also been suggested that anxiety may be reduced as a result of treatment being completed in a more familiar environment (1). Interestingly, although it may be expected that physical impairments would be higher in the sample of patients treated by domiciliary services due to problems with accessing conventional dental care; this did not appear to be the case in our sample. The low proportions of these individuals may reflect improved access for the individuals to many facilities as required by legislation and building regulations, particularly those dedicated to the treatment of patients with special needs. 212

Commonly suggested barriers to access of care for individuals that seek domiciliary services include the financial cost of treatment, transportation, and poor health that prevents individuals from seeking care in a normal dental setting (14). In terms of financial cost, domiciliary services provided by the Royal Dental Hospital of Melbourne are available to all patients on referral to the unit. Patients that meet normal eligibility criteria for public dental care receive this treatment at no cost (15). Eligibility is primarily income-tested and based on receipt of government-issued health care or pensioner concession cards (15). Patients who do not meet these criteria may also access the service with a nominal, subsidised fee incurred for each appointment (15). The results of our study showed that the vast majority of patients (93.1%) met normal eligibility criteria for public dental care potentially demonstrating very low usage of this public service by private patients.

Although previous studies have identified impaired mobility and transportation issues as a major barrier to access of conventional dental care, our results indicated that only 11.4% that accessed these services lived in non-metropolitan areas (14, 16). Even though it would be anticipated that distance to a dental facility would be considered a significant factor influencing use of this service, the results indicate that this does not appear to be the case. This may reflect the nature of centralisation of major health services to metropolitan areas in Melbourne necessitating such individuals in regional areas who have significant medical issues to have adequate supports to be able to access this care. Alternatively, it may indicate the availability of appropriate services to meet treatment needs locally for these patients or the lack of awareness of domiciliary services as distance from the dental hospital increases. Given the potential influence of these factors and that they have not been elucidated as part of this study, it would be pertinent for these to be examined in future research.

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This study also hoped to provide some insight into the medical background of patients being treated through domiciliary services but was limited by documentation of medical histories. Dental Health Services Victoria guidelines were used to guide what was considered a valid medical history in our review (17). On reviewing the paper- based case notes of the patients treated throughout the 236 appointments in August 2015, 195 (82.6%) had no evidence of any medical history recorded within the 12 months of the appointment. This included copies of medical summaries provided by general medical practitioners. Of these, 169 had no medical conditions documented by the clinician even though medical conditions had previously been reported in the referral information. Similarly, 61.0% (n=144) had no medications recorded by the clinician even though the patient had been taking medications at the time of referral. 13.6% (n=32) had no medication list recorded by the clinician or provided as part of the referral possibly indicating that patients were not prescribed any medications or that no historical or current record existed of medications.

These results raised concerns amongst the authors given that poor health limiting access to conventional dental services has been previously cited as a significant influencing factor in seeking dental care through domiciliary services (14). As a result, it would be expected that these patients would be more medically-compromised that patients conventionally treated by community dental services and hospitals. In addition, it would be expected that clinicians working as part of a special needs dental unit would be acutely aware of the importance of maintaining an up-to-date and accurate medical history because of the influence these conditions and medications may have on various dental treatments.

If these medical histories were taken to be an accurate reflection of medical status, patients treated by the domiciliary services would have an average of 0.58 (SD 1.44) medical conditions and be taking 1.98 (SD 3.88) medications. These results would suggest that these patients were much less medically-complex than those treated at 214

other special needs dental units in Australia (18, 19). Likewise, these results were not consistent with Australian studies that have reported much higher rates of medication usage in Australians. One study reported that 87.1% of Australians over the age of 50 were regularly taking one or more medications within a 24-hour period and that 43.3% of these were prescribed five or more medications during the same period of time (20).

In addition to the changes in population demographics and the morbidities associated with increased age that have driven changes in health service provision, changing patterns of dental disease in these groups are also a significant consideration in the development of domiciliary dental services. Public health measures, such as water fluoridation, and improvements in oral health awareness and treatments have resulted in increased retention of natural teeth rather than edentulism and complete dentures which were previous commonplace within the older population (21). Although generally viewed as an indication of the success of modern dentistry, it poses new challenges in the treatment of older adults and, in particular, those that are functionally dependent.

Although there have been significant declines in dental caries across the population, changes to lifetime dental caries experience and increased retention of teeth have resulted in an increased prevalence of root caries in older populations (21). Limited Australian data indicates this is a significant problem for residents of aged care facilities (22, 23). Similarly, retention of teeth has resulted in higher rates of periodontal disease in the older population with figures as high as 44% in 55-75 year olds presenting with moderate to severe periodontitis (21). Oral mucosal lesions, such as candidosis (thrush), are also more common in older populations (24).

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A number of risk factors associated with increased age and loss of functional dependence are linked to these conditions. Polypharmacy commonly causes dry mouth. The reduction of protective factors associated with the lack of saliva and oral clearance, and resultant changes in the commensal oral flora, then play a role in the increased risk of many oral conditions (25). Gingival recession associated with periodontal disease results in exposure of tooth root surfaces making oral hygiene more difficult. It is well recognised that rigorous oral hygiene is paramount to the prevention and stagnation of root caries and periodontal disease. Likewise, routine professional maintenance is required for the management of these conditions (12, 13). This is further complicated by the fact that less than one third of residents in aged care facilities are able to complete their own oral hygiene leaving this responsibility to be undertaken by already busy care workers who often feel like they have been inadequately trained in this area (13).

Although levels of dental disease were not examined in our study, almost half of all appointments (47.4%) were for provision of treatment. Of this group, 47.4% were for dental extractions and 21.1% were for restorations, indicating a significant burden of dental disease amongst patients accessing these services. Likewise, the remainder (31.6%) receieved periodontal treatment indicating the important role these services provide in assisting with oral hygiene amongst these patients. Service provision in our study appeared to be consistent with that reported in the literature (3).

Previous studies have demonstrated the importance of managing levels of untreated dental disease in the ageing because of the significant impact on quality of life (26). Likewise, in recent years, growing links between dental disease and systemic health have been reported throughout the literature indicating the importance of oral health to general health (27, 28). In particular there is growing recognition of the importance of oral hygiene to risk of aspiration pneumonia for residents of aged care facilities (29).

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A recent systematic review identified poor oral hygiene as a potentially modifiable risk factor for mortality in one in ten of these deaths (29).

Despite the growing treatment needs of functionally-dependent older adults in the population, the provision of domiciliary dental care in Australia and overseas is relatively low amongst general dental practitioners (3, 12, 13). Commonly reported barriers to provision of these services include time, poor remuneration, concerns about infection control, emergency drugs, and lack of suitable equipment, and difficulties with transporting adequate instruments and equipment to provide the desired level of care (3, 13). Furthermore, most clinicians felt a general sense of loss of control when completing dental treatment outside of the dental surgery and these combined models of care may be required to improve levels of service availability in the community (1, 3).

In light of the growing complexity of treatment required by the medically- compromised patients, some have advocated for the use of a ‘mix and match approach’ to treatment, thus enabling dental treatment to be provided with a combination of surgery-based and domiciliary care (1, 3). In this manner, regular reviews and simple treatments, such as provision of scaling to assist with hygiene, may be completed in the domiciliary setting thus affording these individuals improved access to care (1). Dental auxiliaries, such as oral health therapists and dental hygienists, are likely to play a vital role in this area into the future. However, technically-challenging or complex procedures may still be completed at the dental surgery if well-planned and kept to a minimum. The nature of procedures completed at the surgery may be determined by availability of suitable equipment or patient safety concerns associated with the procedure (e.g. need for high volume suction due to dysphagia issues, bleeding concerns for anticoagulated patients) (1). Combined models of care such as these may assist with clinicians overcoming some of the challenges they experience in completing domiciliary dental care. 217

Other challenges often faced by clinicians providing domiciliary services include the reliance on carers and staff to organise referrals and appointments for these patients and issues associated with obtaining informed consent for treatment. A proportion of functionally-dependent adults may be incapable of providing consent as was confirmed for the majority (67.8%) of patients in our study. Obtaining consent from substitute decision makers can be frustrating and time consuming for clinicians. Likewise, in situations where patients do not have an appointed decision maker, like 2.5% of patients in our sample, clinicians are required to make every effort to identify individuals who may be able to provide this consent before seeking approval for treatment through mechanisms identified in local legislation. Likewise, discussions with family can result in unrealistic expectations being placed on practitioners to complete dental treatments which may be inappropriate for this patient cohort.

Most certainly domiciliary dental care can present many challenges to dentists. In addition to those discussed, provision of care can be physically-demanding for the clinician and have significant associated initial costs to ensure suitable equipment is available to provide this care (1). The results of this study, however, demonstrate the importance of such services in providing access to oral health care to many members of the community who are unable to access conventional services at dental clinics. Our results, and those published throughout the literature, suggest domiciliary dental care is likely to be a necessary part of how dental services adapt to the growing number of functionally-dependent adults living in the community and residential aged care facilities.

Conclusions

Domiciliary dental appointments accounted for one third of all appointments provided by the Integrated Special Needs Department of the Royal Dental Hospital of 218

Melbourne in the month of August 2015. These services were largely provided to functionally-dependent older adults who were most commonly referred by supported residential facilities and lacked the capacity to consent for procedures. Examinations were the most commonly completed procedure at domiciliary appointments with the remainder being used to provide some form of dental treatment or facilitate fabrication of a dental prosthesis. These results demonstrate the importance of such services in assisting in the ongoing health care of functionally-dependent older adults who may be unable to access conventional dental care independently or lack the support networks to assist them to access the oral health care they need.

Acknowledgements

The authors wish to acknowledge the support of the Commonwealth Government of Australia through the Australian Government Research Training Program Scholarship.

References

1. Fiske J, Lewis D. Domiciliary dental care. Dental Update. 1999;26(9):396-402, 4. 2. Fiske J, Lewis D. The Development of Standards for Domiciliary Dental Care Services: Guidelines and Recommendations. Gerodontology. 2000;17(2):119-22. 3. Sweeney M, Manton S, Kennedy C, Macpherson L, Turner S. Provision of domiciliary dental care by Scottish dentists: a national survey. British Dental Journal. 2007;202(9):E23-E. 4. World Health Organization. ICD-10 Version: 2016: World Health Organization; 2016 [cited 5 June 2016]. Available from: http://apps.who.int/classifications/icd10/browse/2016/en. 5. World Health Organization Collaborating Centre for Drug Statistics Methodology. ATC/DDD Index 2016 Oslo, Norway: Norwegian Institute of Public Health; 2016 [updated 16 December 2015; cited 5 June 2016]. Available from: http://www.whocc.no/atc_ddd_index/. 6. Australian Bureau of Statistics. 1270.0.55.005 Australian Statistical Geography Standard (ASGS): Volume 5-Remoteness Structure, July 2011 Canberra ACT, Australia: Australian Bureau of Statistics; 2013 [updated 18 March 2016; cited 2016 5 June]. Available from: http://www.abs.gov.au/ausstats/[email protected]/mf/1270.0.55.005.

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7. Ahmad OB, Boschi-Pinto C, Lopez AD, Murray CJ, Lozano R, Inoue M. Age standardization of rates: a new WHO standard. World Health Organization Geneva; 2001. 8. Organisation for Economic Co-operation and Development. OECD Health Statistics 2016. Paris, France: OECD; 2016. 9. Australian Bureau of Statistics. Life Tables, States, Territories and Australia, 2013- 2015. Canberra ACT, Australia: ABS; 2016. ABS cat. no 3302.0.55.001. 10. Australian Bureau of Statistics. Australian Demographic Statistics Dec 2014. Canberra ACT, Australia: ABS; 2015. Cat. no. 3101.0. 11. Australian Institute of Health and Welfare. Aged Care Canberra ACT, Australia: AIHW; 2017 [cited 14 April 2017]. Available from: http://www.aihw.gov.au/aged- care/. 12. Hopcraft M, Morgan M, Satur J, Wright F. Dental service provision in Victorian residential aged care facilities. Australian Dental Journal. 2008;53(3):239-45. 13. Chalmers J, Hodge C, Fuss J, Spencer A, Carter K, Mathew R. Opinions of dentists and directors of nursing concerning dental care provision for Adelaide nursing homes. Australian Dental Journal. 2001;46(4):277-83. 14. Strayer MS. Perceived barriers to oral health care among the homebound. Special Care Dentistry. 1995;15(3):113-8. 15. Dental Health Services Victoria. Specialist dental care: Dental Health Services Victoria Victoria, Australia: Dental Health Services Victoria; 2015 [cited 8 November 2015]. Available from: https://www.dhsv.org.au/public-dental- services/specialist-dental-care. 16. Bedi R, Devlin H, McCord JF, Schoolbread JW. Provision of domiciliary dental care for the older person by general dental practitioners in Scotland. Journal of Dentistry. 1992;20(3):167-70. 17. Dental Health Services Victoria. Dental Record Documentation Policy and Procedure. Melbourne Vic, Australia: Dental Health Services Victoria; 2014. 18. Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences. 2017;6(6):123-31. 19. Rohani M. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia. Melbourne Vic, Australia: The University of Melbourne; 2014. 20. Morgan TK, Williamson M, Pirotta M, Stewart K, Myers SP, Barnes J. A national census of medicines use: a 24-hour snapshot of Australians aged 50 years and older. Medical Journal of Australia. 2012;196(1):50-3. 21. Slade G, Spencer A, Roberts-Thomson K. Australia's dental generations: the National Survey of Adult Oral Health 2004-06. AIHW cat. no. DEN 165. Canberra, Australia: Australian Institute of Health and Welfare; 2007. 22. Hopcraft MS, Morgan MV, Satur JG, Wright F. Edentulism and dental caries in Victorian nursing homes. Gerodontology. 2012;29(2):e512-e9.

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23. Chalmers J, Carter K, Fuss J, Spencer A, Hodge C. Caries experience in existing and new nursing home residents in Adelaide, Australia. Gerodontology. 2002;19(1):30-40. 24. Van der Waal I. Potentially malignant disorders of the oral and oropharyngeal mucosa; terminology, classification and present concepts of management. Oral Oncology. 2009;45(4):317-23. 25. Silva M, Hopcraft M, Morgan M. Dental caries in Victorian nursing homes. Australian Dental Journal. 2014;59(3):321-8. 26. Vargas CM, Kramarow EA, Yellowitz JA. The oral health of older Americans: Centers for Disease Control and Prevention, National Center for Health Statistics Hyattsville, MD; 2001. 27. Cullinan M, Ford P, Seymour G. Periodontal disease and systemic health: current status. Australian Dental Journal. 2009;54(s1):S62-S9. 28. Singhrao SK, Harding A, Poole S, Kesavalu L, Crean S. Porphyromonas gingivalis periodontal infection and its putative links with Alzheimer’s disease. Mediators of Inflammation. 2015;2015:1-10. 29. Sjögren P, Nilsson E, Forsell M, Johansson O, Hoogstraate J. A systematic review of the preventive effect of oral hygiene on pneumonia and respiratory tract infection in elderly people in hospitals and nursing homes: effect estimates and methodological quality of randomized controlled trials. Journal of the American Geriatric Society. 2008;56(11):2124-30.

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Chapter 3. Barriers within specialist services to providing dental care for individuals with special needs

Many questions arose from the review of dental services available for individuals with special needs, particularly given these were a first attempt at profiling patients receiving specialist care in Australia. The results also highlighted differences in the services available between the three states and some variability between the patients managed in each setting. This raised questions about the lack of standardisation of specialist services and how this could impact on equitable access to dental care for such vulnerable populations.

Therefore, this chapter presents a manuscript that explored this issue further to seek the views of the workforce at specialist clinics and to understand their perspectives towards the ongoing barriers and challenges to providing specialist care to individuals with special needs in the public dental system. Given that these perspectives have not previously been studied and the limited workforce at these clinics, qualitative methods were employed to enable the interview and emerging themes to provide a deeper insight into the views of participants.

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Challenges associated with providing specialist dental care for individuals with special health care needs

Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim, Sharon Liberali, and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim, Sharon Liberali, Hanny Calache, Peter Parashos and Mina Borromeo

Article status: Submitted for publication to Medicina oral patologia oral y cirugia bucal on 15 January 2021

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Challenges associated with providing specialist dental care for individuals with special health care needs

Abstract

Individuals with special needs continue to experience poorer oral health and difficulties with accessing dental care. This is despite dental specialties and dedicated clinics having been established in several countries to address these unmet needs. Qualitative semi-structured interviews were used to identify challenges and barriers to providing care to these vulnerable populations from the perspectives of clinicians and managers working at these specialist clinics. Participants raised concerns that existing services were unable to meet the needs of these populations due to the under- resourcing of these clinics and long waiting lists. Identifying ways to encourage more dentists to treat individuals with special needs was seen as crucial to addressing issues of access to timely and appropriate oral health care for individuals with disabilities and special health care needs.

Keywords: access to health care, dentistry, disabled persons, healthcare disparities, oral health, vulnerable populations

Introduction

In Australia and internationally there is a growing appreciation of the oral health issues faced by individuals with special needs. In order to address these growing issues, Australia and New Zealand led many parts of the world in establishing a dental specialty aimed at advocating for, and meeting the needs of, these individuals. Upon its recognition in 2003, ‘Special Needs Dentistry’ was defined as the branch of dentistry ‘concerned with the oral health care of people with an intellectual disability, medical, physical or psychiatric conditions that require special methods or techniques to prevent or treat oral health problems or where such conditions necessitate special dental treatment plans’ (1). In response, many public dental systems across Australia

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also established specialist units in major metropolitan centres. Many were affiliated with tertiary education institutions in the hope that this would also contribute to improvements in the training of oral health professionals.

Unfortunately, Australians with special needs still continue to experience poorer oral health and poorer access to dental care compared to those without these additional health care needs. Almost 40% of those with intellectual and physical disabilities are still reported as having untreated dental caries (decay) and periodontal (gum) disease (2-4). Likewise, their dental attendance is reported to be less than the rest of the population with some of this attributed to the unwillingness of dentists to treat this group of patients (3, 5-7). In addition, even those able to access dental treatment under general anaesthesia required an average of two restorations (fillings) and five dental extractions further demonstrating the level of unmet dental treatment need (8).

Research into the profile of patients referred to, and managed at, specialist units appears to reflect the ongoing tendency for general dentists to refer these individuals regardless of the complexity of their presentation (9-12). However, given the limited number of registered specialists in Special Needs Dentistry in Australia and the increasing number of those in the population who may require their services, little has been done to understand the problems within our public dental systems that may be contributing to these oral health disparities.

As a result, this project aimed to investigate the challenges faced by staff working at two of Australia’s largest and most-established referral centres for individuals with special needs: the Integrated Special Needs Department (ISND) at the Royal Dental Hospital of Melbourne (RDHM) and the Special Needs Unit (SNU) at the Adelaide Dental Hospital (ADH). The objective of this work was to determine the ongoing

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challenges and barriers within the public dental system which may be contributing to the oral health disparities of those with special needs.

Research process

Qualitative methods were used to gain insight into the experiences of staff providing specialist dental care to patients with special needs. Purposive sampling involved inviting specialists in Special Needs Dentistry and management staff from the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne and the Special Needs Unit at the Adelaide Dental Hospital to participate in a semi- structured interview. Questions (Appendix 1) explored the challenges of providing oral health care to patients with special needs at specialist services and perceived barriers to providing the level of care they felt was required. Interviews were completed in person or by phone, or similar media, depending on the preference of the participant. The interviews were digitally audio recorded and transcribed before being checked for accuracy.

Inductive thematic analysis was used allowing for common themes to emerge from the responses of the participants. An initial reading was completed of each transcript to ensure accuracy of the transcription against the recording and gain familiarity with the content prior to coding using qualitative data analysis software (NVivo (QSR International)). This coding was completed initially to identify views relating to the challenges of providing oral health care to individuals with special needs. Review of this initial coding allowed for further refining of the emerging themes from responses. Ethics approval was obtained from the Melbourne Dental School Human Research Ethics Advisory Group (ID 1544156.2).

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Results

Four staff members from the Royal Dental Hospital of Melbourne (Participants 1-4) and three from the Adelaide Dental Hospital (Participants 5-7) participated in interviews (78% response rate). Participants were either specialists in special needs dentistry (n=5; Participants 1-3, 5-6) or managers (n=2; Participants 4 and 7) with some undertaking both administrative and clinical roles in their relevant clinics.

All participants agreed that there were ongoing challenges in providing specialist-level dental care for individuals with special needs. Although there were a variety of concerns, there were three prominent themes that emerged from the interviews that will be considered in more detail:

1. Services may not be reaching those requiring specialist care, 2. Specialist services were under-resourced to meet current demand, and 3. General dentists needed to be supported to manage patients with special needs.

1. Services may not be reaching those requiring specialist care

All participants acknowledged the diversity of the patients with special needs and recognised that dedicated services for these populations were likely to differ between locations. When asked about these differences, they felt these were reflective of local health care systems and the historic origins of each unit. For example, those working at RDHM acknowledged that they were less likely to manage patients with complex medical issues due to the existence of hospital-based dental clinics in some of Melbourne’s tertiary and quaternary referral hospitals. Regardless, they felt that this group of patients continued to be the strongest influencing factor for current services.

“And from my understanding there are mainly two drivers. One … the sheer nature of the environment, the needs of the patients where you’re working 227

and the influence of governments. The other comes from the different interests of those who were there at that time: the particular flavours of those who set things up, a home strength as such.” (Participant 1)

“There’s always historically been the hospital clinics…So the medically- complex patients historically were not always seen at the dental hospital as they were seen in the external clinics…which to a certain extent, that’s still the case.“ (Participant 2)

“It’s the medically complex group I think that we’re not really dealing with. Those really acute sort of situations” (Participant 3)

“I always thought it grew out of a community need…I just kept acquiring more and more and more (patients)…It developed as a clinic because I just got too many patients… So that's how it went from organic to structured mainly by the sheer demand from the community.” (Participant 6)

In addition, participants felt it was important to ensure that specialist services adapted to the changing needs of the community. In particular, services needed to consider groups beyond traditional definitions of ‘special needs dentistry’ who may benefit from access to these services.

“Look it's a tricky one in terms of where the boundary of special needs is … for example, homeless people … When you look at the definition of Special Needs then technically they're not ‘special needs’. But when you actually start working with homeless people you realise that a lot of them do have mental health issues, they do have disabilities, or, you know, they do have drug and alcohol problems and things like that that somehow makes their treatment more complex … a special needs environment will actually help.” (Participant 2)

Furthermore, clinicians raised concerns about restrictive financial eligibility criteria for public dental services, which they felt did not necessarily reflect the additional health 228

care needs of individuals. Also, the location of referral centres may disadvantage many and impact on their ability to receive specialist care.

“Your ‘above income’ patients. That’s the other group who sometimes don’t get treatment at that level because they’re not eligible for public services and there’s really nowhere private set-up for them to go…This is not about poor people versus rich people. This is about sick people versus healthy people.” (Participant 6)

“Certainly country Victoria doesn’t get the same access … I think it’s inequitable … some people get better quality care at that level than other.” (Participant 2)

“In the country and rural areas. We've got a real gap. The infrastructure is not what we need there yet” (Participant 7)

2. Specialist services are under-resourced to meet current demand

Another significant concern was the ability of current services to meet the needs of the individuals. Participants referenced inadequate resourcing as impacting on their ability to provide appropriate and timely care to patients and to meet their treatment needs. In providing examples, although long-waiting lists were only raised by participants from Melbourne, the limited access to general anaesthetic facilities was common concern across both units.

“The waiting list has blown out enormously in the last couple of years to a point where I think it a genuine barrier to getting timely care.” (Participant 2)

“The waiting lists is a big factor that perhaps comes back to efficiency and access to care.” (Participant 3)

“We are limited… with generally anaesthetic facilities … patient care is suffering. No matter how we try to categorise the patients and give priority where needed, timely care is still not available.” (Participant 5)

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“And I have known patients who have waited 3 years for a general anaesthetic so it’s not unusual. So can we fix that and how much more money would be needed to fix that? … no idea … a fortune. And I can’t see it changing.” (Participant 1)

For many of the participants there was an underlying feeling that these limited resources were a reflection of the lack of priority given to these populations within public dental services despite the growing recognition of their oral health needs and these groups being highlighted as priority areas in the National Oral Health Plan (13).

“Special needs is sometimes just about tokenism. Then we have all the other barriers: the funding, the waiting lists. Certainly the waiting lists is a big factor that perhaps comes back to efficiency and access to care” (Participant 3)

Clinicians provided several other examples that suggested that those with special needs were often an afterthought in the planning and provision of services across both units.

“The hospital environment is a real issue … a big building, brightly lit, garish yellow colours everywhere, and bright lights. The waiting area are extremely noisy and crowded. We have patients with autism and severe anxiety and post-traumatic stress thrown in with everybody else in … what seems crowded and chaotic situation.” (Participant 2)

“I think a limiting factor is the physical environment of this hospital … there’s nothing really adapted to our patients ... what we have is really an after-thought.” (Participant 3)

“The current dental hospital was forced to fit itself into a certain structure. We weren’t able to design a structure which we thought could be better.” (Participant 6)

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3. General dentists need to be supported to manage patients with special needs

Unfortunately, participants also felt that the lack of priority given to individuals with special needs and the specialist services for them was also reflective of attitudes towards these patients within the wider public dental system. As a result, a recurring theme was that they perceived that much of the pressure placed on specialist services was due to general dentists being unwilling to treat those with special needs. Insufficient support or productivity pressures resulting from funding models were perceived to be significant barriers to dentist providing care in the public dental system.

“But part of it is going to be the funding model because if these patients are going to take too much time they're likely to be referred because of the time. So I think it's something that has to be worked through.” (Participant 2)

“I think that some of the problems lie in the lack of support clinicians feel. Particularly in smaller community dental clinics and private practice. What they lack is that mentoring, that reassurance, that guidance.” (Participant 3)

“I think that we could be receiving less referrals. I think some of them are people who just don't want to even consider looking at a patient with disabilities and that's inappropriate … The problem with that is that you can't make a dentist do special needs. They have to want to do it.” (Participant 5)

“I think one of the main issues is we have a lot of patients on the wait list … patient load is going to increase. Especially if we consider the aging population … we just don’t have the workforce... There just aren’t enough dentists in our unit to meet the demand.” (Participant 4)

“So starting to have discussions … that because a person listed a particular medical condition, that was not an automatic referral…By the same token, 231

these people are more and more the patients in people's waiting rooms … They're not going to be the rare occurrence. … the longer that we live, the more complex we become.” (Participant 7)

In addition, several clinicians identified a lack of preventive focus in oral health, both in the public dental system but also in the wider community. As a result, they felt the oral health of these vulnerable populations was being neglected and that this was part of the reason for the pressure on specialist services due to the complexity of their needs.

“I don't see a preventative message is getting integrated well enough … And I think that's a challenge probably for the whole profession, not just special needs. But given that the oral health state of people with special needs; it's worse than the general population. It's more perhaps a more pressing need than even the general population.” (Participant 2)

“We have so many patients who are complicated to treat, but incredibly easy to prevent the disease. Treating disease in this group become very resource heavy particularly when you require more experienced clinicians to do the treatment. What we need is to have a workforce working efficiently towards prevention.” (Participant 3)

Discussion

Individuals with special needs continue to experience poorer oral health and difficulties with accessing dental care. This appears to be despite the dental profession establishing a specialty recognising their more complex healthcare needs. Whilst this may have assisted in increasing the specialist workforce able to manage their more complex needs, the results of this study suggest that their crucial work may partly be hampered by the under-resourcing of these services (14).

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In this setting, inadequate resourcing appeared to be central to many of the barriers encountered by specialist services in providing dental care to those with special needs. Clinicians raised two key examples in inadequate access to general anaesthetic facilities and waiting lists, although this varied slightly between the two units. However, inadequate workforce and funding were cited by all participants throughout their interviews as other confounding factors. Regardless, it was apparent that the primary concern of clinicians appeared to be not only their ability to provide dental care to their patients in a manner which they felt was conducive to improving their oral health at that individual level, but also at the wider population level.

Unfortunately, despite the efforts of clinicians to “just do the best we can with what we have”, their concerns that the system may be failing patients at both of these levels can be seen in the literature. In particular, the significant level of untreated disease in those receiving treatment under general anaesthesia, at the same facilities involved in this study, not only highlighting the degree of unmet need at the individual level because of waiting lists, but also the lack of preventive focus for oral health in these populations, both within public dental services and the wider community (8). Other examples are seen throughout the literature with reference to other special needs populations such as functionally-dependent older adults in residential aged facilities and those with chronic medical conditions (15, 16).

One of the participants highlighted the compounding nature of this lack of prevention and timely care, suggesting that those who may already present with challenges in their dental treatment were then further complicated when they also had more severe dental problems. One specialist noted that this combination was “very resource heavy” and that “what we need is to have a workforce working efficiently towards prevention”. Part of the problem is likely to be the manner in which public dental services have traditionally been funded; primarily for ‘interventions’ measured in notional units of clinical activity (Dental Weighted Activity Units (DWAUs)) (17). As a 233

result, in a specialist service dedicated to managing patients who may take longer to treat, because of the complexity of their conditions or their inability to tolerate ‘conventional’ dental care due to compliance issues, the additional time to provide a single treatment, a filling, for example, is not reflected in any additional funding for the complexity of the case. In addition, in these specialist services, where prevention may be the primary focus, the lack of ‘treatment intervention’ in these circumstances is likely to be reflected in less funding for the appointment than the filling or extraction it was aimed at preventing. As a result, specialist services for those with disabilities and additional health care needs are inadvertently likely to be disadvantaged in terms of funding.

Furthermore, given that community dental services are funded in the same manner, there is no incentive for the general dentist to attempt treatment on patients who may take more time to manage, particularly where these clinicians may be asked to justify their apparent lack of ‘productivity’ based on these measures. Although this was perceived to be a reason contributing to the lack of willingness of dentists to manage patients with special needs, thereby resulting in referrals to specialist services, these barriers require further investigation.

Despite a much greater awareness and advocacy for the rights of individuals with special needs in the last few decades (18), the reflections of a number of participants, primarily from Melbourne, was that current initiatives, including specialist oral health care services for these patients, were more of an act of ‘tokenism’ rather than a true understanding of the needs of these vulnerable populations. This also extended to concerns about the culture of the organisation and the failure to foster an inclusive environment recognising the diversity and vulnerability of populations that traditionally access public dental services: “And from the patient’s point of view, the impersonality of when you … go upstairs and into this reception area where you feel squashed or confined … The receptionists, they haven’t got enough of them and so 234

everyone has to be rushed through. No one has got enough time to explain things. An awful lot should be done for the patient.” Although it is unlikely that the reasons for these apparent deficiencies can be confirmed, any ‘sense’ that this is the case should be a cause for concern and should stimulate all organisations to reflect on the environment and culture they foster.

Ironically, the question arises whether by creating a specialty dedicated to enhancing the care and understanding of individuals with special needs that the dental profession has inadvertently fostered a system whereby dentists are able to ‘decline’ providing dental care because it is ‘too difficult’, and instead direct patients into a system where they are expected to be provided with specialist care, which is instead under- resourced and likely to be unable to meet their needs or actually improve their oral health. This is despite the diligent efforts of the many oral health professionals that dedicate their careers to this pursuit in specialist units and who are faced with this seemingly insurmountable challenge on a daily basis. The reality is that this research, and the current available literature, do not allow for these questions to be answered but should raise concerns for those with special needs, the oral health profession, and disability sector, particularly with the likely growth of these population in the future. Further research is required into not only the oral health needs of those with special needs, but also the barriers faced by clinicians in treating these patients or how complexity tools may be incorporated into referral systems to determine appropriate level of care for these patients.

Regardless, the answer to these issues is likely to revolve around the need for greater resources to be dedicated to ensuring general dentists are willing and able to manage more patients with special needs at the primary care level and with a greater focus and awareness of prevention in these services and the disability sector. Part of this may be additional training and experience as well as ongoing support from specialists, but any barriers or disincentives in the public dental system need to be addressed. In this 235

manner, specialist services, even with the limited specialist workforce, can be reserved to provide timely care to those with the more complex needs.

Acknowledgements: Mathew Lim would like to acknowledge the support of the Australian Government Research Training Scholarship and the Rowden White Scholarship from the University of Melbourne.

Statement of interests: Sharon Liberali declares that she is the Director of the Special Needs Unit at the Adelaide Dental Hospital. No potential competing interest was reported by other members of the research team.

Appendix 1. Question guide used for semi-structured interviews

1. Can you tell me about your current role at (clinic)? 2. Can you tell me about the services your clinic provides? 3. Do you know how the clinic was established or evolved into a specialist service? 4. What do you feel are some of the ongoing challenges to providing dental services for patients with special needs at your clinic? 5. Do you feel there are factors that impact on what you can provide for your patients? 6. What do you see as some of the challenges facing your clinic moving into the future?

References

1. Dental Board of Australia. List of specialties. Available from: www.dentalboard.gov.au/.../default.aspx?record=WD10%2F3238&dbid=AP&chk sum=hXwmbYjUdcXv23v2lFcC3w%3D%3D.

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2. Pradhan A, Spencer A, Slade G. Factors influencing oral health of adults with physical and intellectual disabilities in various living arrangements. Australian Dental Journal. 2007;52(S4). 3. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 4. Pradhan A. Follow-up of Special Olympics athletes post oral health screenings. Journal of Disability and Oral Health. 2015;16(2):49-53. 5. Lopez Silva CP, Singh A, Calache H, Derbi HA, Borromeo GL. Association between disability status and dental attendance in Australia-A population-based study. Community Dentistry and Oral Epidemiology. 2021;49(1):33-39. 6. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 7. Yap E, Parashos P, Borromeo G. Root canal treatment and special needs patients. International Endodontic Journal. 2015;48(4):351-61. 8. Lim MA, Borromeo GL. Oral health of patients with special needs requiring treatment under general anaesthesia. Journal of Intellectual & Developmental Disability. 2019;44(3):315-20. 9. Lim MAWT, Borromeo GL. Patient referrals to special needs dental units in Tasmania, Australia. Journal of Disability and Oral Health. 2017;18(3):87-94. 10. Lim MAWT, Borromeo GL. Special Needs Dentistry: Interdisciplinary management of medically-complex patients at hospital-based dental units in Tasmania, Australia. International Journal of Medical Research and Health Sciences. 2017;6(6):123-31. 11. Rohani M, Calache H, Borromeo M. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia. Australian Dental Journal. 2017;62(2):173-9. 12. Lim MAWT, Liberali SA, Borromeo GL. Utilisation of dental services for people with special health care needs in Australia. BMC Oral Health. 2020;20(360). 13. Oral Health Monitoring Group. Healthy Mouths Healthy Lives. Australia's National Oral Health PLan 2015-2024. Adelaide SA, Australia: COAG Health Council; 2015. 14. Dental Board of Australia. Dental Board of Australia Registrant data. Reporting period: 01 April 2020 to 30 June 2020. 2020. 15. Silva M, Hopcraft M, Morgan M. Dental caries in Victorian nursing homes. Australian Dental Journal. 2014;59(3):321-8. 16. Australian Research Centre for Population Oral Health. Chronic disease and use of dental services in Australia. Australian Dental Journal. 2011;56(3):336-40. 17. Australian Government Department of Health. National Partnership on Public Dental Services for Adults. 2017. 18. The Hague. Convention on the International Protection of Adults, (13 January 2000).

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Chapter 4. Barriers experienced by oral health professionals when providing dental care for individuals with special needs

The previous chapter explored barriers experienced by the specialist workforce in providing oral health care to individuals with special needs. One of the key concerns raised by specialists in special needs dentistry was the perceived lack of willingness amongst general dentists and other oral health professionals to treat these patients.

Consequently, this chapter includes two manuscripts that explored the challenges experienced by oral health professionals (excluding specialists in special needs dentistry) working in the public dental system in relation to managing patients with special needs. Given the limited research in this area, both studies in this section used semi-structured interviews and inductive thematic analysis to explore the views of clinicians. A qualitative approach was used to enable clinicians to provide direction to the discussions and thus provide the foundation for themes related to barriers and desired supports that would emerge from the analysis.

The first manuscript addressed the barriers encountered by oral health professionals working in primary care settings. Such barriers they felt may impact on the willingness of clinicians to manage patients with special needs. Further to these results, the second manuscript explored how these barriers may be overcome. This latter manuscript discussed the nature and types of support oral health professionals felt may help improve their willingness or ability to manage patients with special needs.

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Perceived barriers encountered by oral health professionals in the Australian public dental system providing dental treatment to individuals with special needs

Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim, Sharon Liberali, and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim, Sharon Liberali, Hanny Calache, Peter Parashos and Mina Borromeo

Article status: In revision following peer review in Special Care in Dentistry

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Perceived barriers encountered by oral health professionals in the Australian public dental system providing dental treatment to individuals with special needs

Abstract

Aims: To investigate barriers experienced by clinicians treating individuals with special needs in the Australian public dental system. Methods and Results: Oral health professionals working at primary care clinics in the public dental system were invited to participate in semi-structured interviews or focus groups to discuss the challenges they faced in managing patients with special needs. Qualitative methods, employing inductive thematic analysis, revealed two primary barriers: (1) clinicians lacked confidence in their ability to treat patients with special needs because of insufficient training and experience, and difficulties obtaining information about their patients, and (2) barriers within the public dental system, including inadequate funding, equipment and facilities, and productivity pressures prevented clinicians from being able to provide the care patients required. The priority and understanding of the oral health for these individuals within the public dental system and wider disability sector was also raised. Conclusion: A perceived lack of training and experience in managing individuals with special needs was a barrier to treating patients with special needs. Other significant barriers were under-resourcing of the public dental system and a lack of priority and understanding regarding oral health amongst carers of individuals with special needs and other health professionals.

Key words: General Practice, Dental; Medically Underserved Area; Disabled Persons; Health Care Utilization

Introduction

In Australia, Special needs dentistry is a recognized dental specialty that “supports the oral health care needs of people with an intellectual disability, medical, physical or 240

psychiatric conditions that require special methods or techniques to prevent or treat oral health problems, or where such conditions necessitate special dental treatment plans” (1). Unfortunately, despite the recognition and growth of this specialty over almost two decades, individuals with special needs are known to have poorer oral health and greater unmet treatment needs than the rest of the population with less regular dental attendance and difficulties with finding oral health professionals willing to treat them reported as potential contributing factors (2, 3).

A survey of general dentists in Western Australia reported a lack of experience in managing patients with special needs as the primary reason for not treating these individuals (4). This complemented the views of specialists in special needs dentistry who have suggested that general dentists may feel pressured to refer these individuals, not only because of this lack of experience or training, but also due to a lack of support and growing productivity pressures placed on them when working in the public dental system (5). Internationally, there has been significant advocacy for better training of oral health professionals in relation to managing the needs of patients with special needs in an attempt to address the reported lack of preparation and experience of clinicians in this area (6-9). Interestingly, a study from Taiwan found that lack of encouragement from hospital policies was identified by more than half of dentists surveyed to be a reason for their unwillingness to treat individuals with special needs (10).

Despite this being a significant factor for basic access to care for these populations, the Australian and international literature remain relatively limited in this area. As a result, the aim of this study was to ascertain the views of clinicians as to whether they perceived there to be barriers to managing patients with special needs within the Australian public dental system. It was anticipated that in addition to identifying their own relative lack of experience that clinicians may also identify barriers associated

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with the resourcing and funding of public dental services as factors that influenced their willingness to treat individuals with special needs.

Methods

Qualitative methods were used to explore the views of clinicians working within the public dental system in relation to managing patients with special needs. Dental clinics with programs and initiatives targeted towards individuals with special needs were approached regarding their interest in being included in this study. Clinical managers at these clinics advertised internally to their clinicians using a recruitment flyer. All clinicians working at these clinics, including dentists, oral health therapists, dental hygienists, dental therapists, and dental prosthetists, eligible to participate.

Clinicians who contacted the research team were invited to participate in a semi- structured interview or focus group to discuss their experiences which were either conducted in person, by phone, or online video communication software (Zoom (Zoom Video Communications, Inc., San Jose, CA, USA) or Microsoft Teams (Microsoft Corporation, Redmond, WA, USA)). A question guide was used to direct discussions to the factors that participants perceived may impact on their willingness to provide care to individuals with special needs and included:

1. Can you tell me about your professional background and your current role at the clinic? 2. Do you treat patients with special needs? 3. Do you feel able to provide your patients with special needs with the treatment they require? 4. Do you feel there are any factors that prevent you from being able to do so? 5. Are there factors that you feel may affect the willingness of clinicians to treat individuals with special needs?

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Interviews were conducted by a single member of the research team for consistency and digitally recorded. Interviews were professionally transcribed and checked for accuracy by the research team prior to undergoing analysis.

Analysis involved an initial reading of the responses to increase familiarity prior to coding using a grounded theory approach and inductive thematic analysis (11). This process involved identifying and coding of responses related to perceived barriers. These were subsequently recoded to reflect emerging themes in the responses. Data analysis was completed using NVivo software (QSR International, Melbourne Vic, Australia) and was primarily completed by a single member of the research team.

Ethics approval was granted by the Melbourne Dental School Human Ethics Advisory Group (Ethics ID: 1544156.2), the Tasmanian Health and Medical Human Research Ethics Committee (Ethics Ref No. H0015272), the Central Adelaide Local Health Network Human Research Ethics Committee (Ref No: 11629), and the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research (HREC Ref No. 2019-3364).

Results

Participant characteristics and responses to questions

A total of 27 clinicians participated working across four different government-funded dental services (Table 1). Ten of the clinicians were male (55.6%) with participants having an average post-graduation clinical experience of 22.9 years (Range: 3-48 years, SD 11.9 years). Twelve of the clinicians (44.4%) worked in rural and regional areas and one third (n=9, 33.3%) had an overseas primary dental qualification.

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All participants treated patients with special needs and chose to respond to all questions in their interviews. When asked ‘Do you feel able to provide your patients with special needs with the treatment they require?’ the majority of clinicians (n=19, 70.4%), including all oral health therapists and prosthetists, answered negatively. Two of the three positive responses were from clinicians in managerial positions with the remainder (n=5, 18.5%) being unsure. All participants responded positively to either or both of the questions ‘Do you feel there are any factors that prevent you from being able to do so?’ and ‘Are there factors that you feel may affect the willingness of clinicians to treat individuals with special needs?’.

Table 1. Qualifications of participants across health services

Dentists Oral Health Dental Therapists Prosthetists Location of practice

Northern Territory 2 0 0 (Oral Health, Top End Health Service) South Australia 8 0 0 (South Australian Dental Service) Tasmania 7 4 1 (Oral Health Services Tasmania) Victoria 4 1 0 (Carrington Health, Link Health and Community)

Primary dental qualification

Trained in Australia 13 5 1

Experience of clinician

New graduate (<5 years) 1 1 0

6-10 years 4 1 0

>10 years 16 3 1

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Emerging themes related to carriers to providing care for patients with special needs

A wide range of views were expressed by clinicians when asked to reflect on perceived barriers to providing care for individuals with special needs. However, these were generally related to two central themes:

(i) a lack of confidence in their own ability as clinicians (Figure 1), and (ii) a lack of support provided to them by the systems in which they worked (Figure 2).

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Figure 1. ’Ability and confidence of clinician’ theme determined from inductive thematic analysis.

More experienced clinicians

Beneficience Want to do right thing by patient Doubt in ability Don't want to cause harm to patient Non-maleficence Concerns about adverse events

University training

Training Continued professional development Inadequate training and experience 'Sicker' than typical patients

Experience Don't see patients with special needs regularly

Unable to contact doctor

clinicians Advice from other health Doctor unable to provide professionals information

Confusion from differing Ability and confidence and ofconfidence Ability Insufficient information to advice treat

Difficulties obtaining consent

Consent Inability to gain information about competence

Worry about treating complex patients

Concern about adverse Psychological impact events

Concern about litigation 'Burnout' of clinicians

Physical strain of treating patients in wheelchairs Physical impact Physcially tiring to treat patients

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Figure 2. ‘Lack of support for clinicians’ theme determined from inductive thematic analysis

Insufficient access to GA

Facilities do not reflect GA waiting lists needs of patients

Specialist services

Hoists

Wheelchair tilts Inadequate access to required equipemnt Bariatric chairs

Materials and equipment

Wheelchair access

Can't reach patient's mouth to treat Inadequate resources

Small surgery size Inappropriate infrastructure for patient's needs Clinic locations

Do not account for sensory needs

No consultation rooms

Limited specialist workforce

Limited workforce in regional areas

Insufficient workforce numbers for demand Inadequate workforce

Part-time workforce

Turnover of staff

Insufficient training or experience

No recalls despite high risk

Waiting lists Insufficient priority on waiting lists Policies

Ongoing care discouraged

No continuity of care

No follow-up for prevention Lack of support for clinicians for of support Lack

Insufficient information obtained at triage

Awareness of non-clinical Additional time not staff provided for appointments

No questions about needs of patient Lack of understanding

No recall

Policiies do not reflect Waiting lists needs of patients

No dedicated funding Productivity measures

Lack of programs targetting Lack of priority special needs populations

Large sectors missing out on care

Lack of awareness about services

Lack of prevention Lack of support from other health professionals and disability sector Health literacy of carers

Poor communication with other health professionals 247

Ability and confidence of the clinicians When clinicians talked about their willingness to treat patients with special needs, much of their reluctance was related to some doubt in their ability and wanting to practise by the principles of beneficence and non-maleficence.

“(Dentists) want to do the right thing for the patient … I think that’s pretty much the main barrier. The lack of confidence in their knowledge or ability.” (Dentist 17)

“They'll hesitate about harming a patient or doing something incorrectly that compromises their medical condition so that they have a very severe adverse medical reaction.” (Dentist 11)

However, two main themes underpinned this reluctance. The first was that clinicians felt they had inadequate training or experience in managing those with special needs.

“I might not be providing the best treatment because I'm muddling my way through sometimes.” (Dentist 14)

“We're worried that we're going to do the wrong thing … because it's not something that we come across a lot. So you're not comfortable with your decisions because it's just not part of your usual practice.” (Dentist 20)

This was further exacerbated by difficulty in obtaining information about their patients to make appropriate treatment decisions. This was often sought from other health professionals, mainly medical practitioners. Once in possession of the relevant information, clinicians generally felt more comfortable with providing treatment.

“In terms of accessing more information from specialists [medical] … it's really difficult … I've actually had to hound them to get some information

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about the condition that the patient is suffering from and how safe it is to go ahead with dental treatment” (Dentist 7)

“They're not too worried about doing it and as long as they get the right advice.” (Dentist 15)

Other themes that emerged from discussions were the potential for burnout, physically and/or psychologically, when frequently managing complex patients or the anxiety associated with adverse events and possible litigation. Some of these issues potentially reflected inadequate support provided by their work environment.

“To be very honest, I think most clinicians are fairly caring and they have empathy for the patient … [but] it's much more tiring to see a special needs patient and sometimes you can get a bit frustrated.” (Dentist 14)

“Doubting their abilities. Being worried about something going wrong. Worried about potential for litigation.” (Dentist 15)

Lack of support for clinicians in public dental system Further to the insecurities that clinicians had in their own abilities, there was a general sense that the public dental system was not fully conducive to meeting the needs of patients with special needs. When it came to providing care, the most reported concern was that clinics were under-resourced, including references to facilities or equipment, such as general anaesthetic (GA) facilities and hoists or wheelchair tilts, as well as inappropriate infrastructure for the needs of some patients to physically access the clinic, or to enable clinicians to provide treatment safely.

“I find it sometimes quite difficult if you've got a slightly mentally- challenged patient who might need one or two small fillings to be done. And you can't access [the teeth needing treatment] at all because you can’t clean them, and you can't have a GA at all.” (Dentist 6)

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“We don’t have good wheelchair access; we don't have a hoist … there is a physical limitation to what I could perform for those patients.” (Dentist 17)

“In terms of the autistic kids, it’s the whole thing. The whole environment can be quite clinical. So, it’s not a welcoming environment for a kid with the sensory issues. The noise, smells, and you know all sorts of lovely stuff going on.” (OHT 3)

A large proportion of the frustrations of clinicians was related to a feeling of lack of support and their inability to provide what they felt was the appropriate level of care. Clinicians provided examples such as long waiting lists, the inability to complete recalls or ongoing care, time and productivity pressures, and inadequate workforce. Although these were not necessarily unique to managing patients with special needs, they felt that the consequences of these were likely to be more significant for these vulnerable populations.

Productivity pressures: “We’ve got productivity goals … That’s just never going to come anywhere near those if you’re treating special needs patients.” (Dentist 4)

Time pressures: “The biggest barrier to treatment for me is time … Everything else, the physical constraints you can deal with … But if you don't have time, then none of that is going to happen.” (Dentist 20)

Waiting lists and ongoing care: “The public system has some quite firm guidelines which relate to waiting lists. Adults generally do not go on a recall which is a limitation.” (Dentist 11)

Workforce: “We cannot meet the needs of our client base, nevermind even factoring in our disability cohort or our medically-compromised cohort … we don't have enough dentists and we don't have enough chairs.” (Dentist 4)

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Clinicians felt that some of these issues, for example, related to current policies, were due to a lack of awareness or understanding about individuals with special needs beyond the clinician group. Several clinicians felt this also extended to other administrative staff, particularly those making appointments. In triaging and scheduling patients, they felt that there was little consideration given to trying to assess the needs of these patients. As a result, clinicians felt they were undermined by this lack of information to prepare for the patient and insufficient time in the appointment to reflect their more complex needs.

“There's very limited consideration about people with special needs and how some of those people need more time for an appointment. This is why it's really important to ask more questions ... customer service officers might be the first point of call to our service, but they don't bother to ask an open question.” (OHT4)

Overall, they felt these issues reflected a lack of priority within the public dental system towards addressing the oral health needs of those with special needs.

“We historically have targeted particular groups within the community … but we've never really focused on special needs as a priority group. There's never been a channel of resources in that area. So it just doesn't seem to be a priority.” (Dentist 19)

“It's a really good question about what are your priorities? I would hope that people with special needs are a priority group … Because of their circumstances. But how do we all do it better? Well, it comes down to training, support, time, education.” (OHT 4)

Other concerns relating to the oral health of patients with special needs There were a few additional concerns that were raised by clinicians, and although they did not directly pertain to barriers to providing care for individuals with special needs,

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they were factors that were important to the oral health of this population. Clinicians raised concerns around three main issues:

1. Underserviced populations, such as those in aged care:

“To be honest I don't know where these patients go but we are going to see huge numbers of them … And often if they're not able to be treated in the chair. They're the ones that will be assessed for a GA and their examination and a clean will be done under GA.” (Dentist 19)

2. Lack of awareness or priority of oral health amongst carers:

“Do the carers have the knowledge … that we have a service that can provide these sort of patients with that sort the care?” (Dentist 21)

“I also see a group of disability clients … The carers are not doing their part … they are not caring the way that they should be.” (Dentist 1)

3. Lack of understanding of other health professionals about oral health:

“The medical staff often didn't understand what dentistry was about or who or what we had to do.” (Dentist 16)

“Specialists, outside of dental, sometimes perhaps have limited education or understanding … just making dentures for everyone or having teeth out and having full dentures put in is not going to solve problems” (Prosthetist 1)

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Discussion

The oral health needs of individuals with special needs, and the complexity often involved in addressing them, is well recognized such that Australia and New Zealand led many parts of the world in establishing the dental specialty, Special Need Dentistry, to advocate for, and assist with, meeting the needs of people with special needs (12). However, a complete reliance on a limited specialist workforce to manage the needs of the growing population of individuals with disabilities and complex medical issues is not viable, nor was it an expectation or the intention (5, 13). More recently, there has also been growing concern that referrals to these services have reflected a diagnosis or disability rather than patient complexity, raising concerns that many referrals are potentially unnecessary and/or inappropriate (5, 14). In addition, the growing weight of such referrals on limited specialist services may impact on the timeliness of care given already lengthy waiting lists (5, 14, 15).

The literature has sought to understand these referral tendencies reporting a lack of experience or training of dentists in this area (4) which has been reflected in the current study (Figure 1). While advocacy from the specialty has resulted in improved exposure to Special Needs Dentistry in the training of Australian oral health professionals, attention should also be focused on oral health professionals trained overseas who were a significant proportion of our study sample and may not receive training in this area (9). There is a notable absence of content in this area within examinations of international dental graduates applying to practise in Australia (16). This new consideration, which has emerged from the current study, suggests the need to reinforce the basic expectation that providing healthcare to individuals with special needs is not only an expectation of the dental profession, but also an obligation to the wider community as signatories to the Convention on the Rights of Persons with Disabilities (17, 18).

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Another theme that emerged was that clinicians found it challenging to access the desired information to better equip them when attempting treatment. It is understandable that not all individuals with special needs may be able to recount the details required by a treating health professional, but this lack of information often extended to families, carers, and other health professionals that were approached. To some degree these concerns reflect and isolation or the lack of interdisciplinary interaction between the dental profession and other parts of healthcare and a historical notion that the mouth is separate from the rest of the body (19, 20).

Previous studies have suggested that clinicians felt that the low level of oral health literacy amongst carers and other health professionals significantly impacted on their understanding of preventive oral health messages and the oral health issues faced by their patients with special needs (21). This was reinforced by the responses of participants in this study. Given the insecurity many clinicians have with regards to their knowledge of disability or various medical conditions and medications, it seems reasonable for them to be hesitant for them to want to provide treatment for these patients when they may have concerns about whether this treatment is safe for the patient. Likewise, given the relative unfamiliarity of other health professionals with dental procedures, this may then also pose an issue if these medical professionals are unable to offer the advice oral health professionals require resulting in an ongoing struggle for patients to receive even the most basic dental care.

The presentations and treatment needs of individuals with special needs can, at times, be overwhelming for a clinician with less experience and may be a reason for the reluctance of many to attempt treatment and a key reason for referral (5). The issue in these cases is not just the additional pressure on the public dental system (22), but the undue suffering of these individuals because of disease that could have been prevented, and that they often endure quietly on waiting lists because they may be unable to advocate for their own needs: “Unfortunately these special needs patients 254

are often the least complaining … so we don't get that pressure from their carers …. We all know they're suffering but it's just because they don't have the ability to complain.”

The simple solution would appear to be better preventive care for this population. However simple as this may seem, is not something that can be addressed by the dental profession alone. The current situation appears to demonstrate that efforts to do so in the past have seemingly been ineffective. It is only with the support of carers, families, and all health professionals that a more integrated and holistic approach to health and prevention may be achieved. The literature has recommended improved oral health education and greater interdisciplinary education of all health professionals as a first step (23, 24). In addition, establishing these relationships would enable further reorientation of preventive messages in oral health towards being supported by a common risk factor approach (25).

In leading advocacy in this area, the oral health profession, and in particular the public dental system, needs to listen to concerns from its workforce, to find ways to reduce the reliance on specialist services, and enable care by all oral health providers. The answer, once again, is likely to be utilizing the skills of all dental personnel to form an integrated team to improve access to care at the primary care level with a clinical focus on prevention supported by wider oral health promotion and education (26). As was highlighted by one of the participants, “I think that [clinicians] should be more aware that this is the new normal and they should be more willing to see these patients … With the ageing population … there are actually a lot more of these patients that will be needing care, especially within the public system”. The problem is that there continues to be a significant proportion of the dental workforce who are unwilling to manage this group of individuals (4, 27).

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The other significant concern raised by the current study was the lack of support provided to clinicians. In particular, the sense of being unable to fulfil their duty of care because of under-resourcing; namely long waiting lists, policies that appear to discourage ongoing care and recalls, inadequate access to facilities and equipment, and productivity pressures based on surgical output that appears to place little importance on processes which support the improvement and maintenance of the oral health of this vulnerable population (28-30).

Concerns about inadequacy of funding and resources within the Australian public dental system are not new with this shortage of resources and overwhelming demand creating an environment whereby patients are more likely to require and receive a dental extraction than preventive treatment (31, 32). The significant impact this approach can have on the oral health, particularly of vulnerable populations, such as those with special needs, have been raised (32) and have been reinforced by the current study. What often is forgotten, however, is the potential flow-on effects this can have on the general health and well-being of these individuals who already have significant and complex health needs. The issue is not that these problems are not known, but that a status quo exists that limits cultural change and continues to impact on the perceptions and willingness of clinicians to treat those with more complex needs (33, 34).

Part of the issue is that the system guides clinicians away from providing patient- centered care, almost discouraging a preventive approach, in favor of enabling a purported equity of access across the population, largely because of under-resourcing for existing demand. Unfortunately, this is because current funding models promote surgical treatments of disease rather than early interventive or preventive treatments (29, 35). In addition, despite the additional complexities associated with treating those with special needs, the current funding models do not include measures that reflect

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the complexity associated with the provision of oral health care and the time required to provide it.

Given the paucity of research in this area, this study offers an initial insight into reasons why clinicians may be unwilling to treat patients with special needs and thus why these individuals experience such barrier to access of care. Although our findings reinforce some of what has been reported in the literature with regards to lack of experience and training (3, 4), it does also raise new issues pertaining to barriers within the public dental system itself. Given that our sample was limited to a small number of community dental clinics, further research is required to ascertain if the concerns raised by participants are reflective of those of the majority of clinicians working in the public dental system in Australia as well as in other countries.

Regardless, the initial portrait that has been painted was one where clinicians felt that they faced an uphill battle. Some are confronted by challenging presentations of those with special needs, for which they feel they have not been adequately trained. They are unable to obtain the support they require and work in a system that is not equipped to manage the needs of those it is mandated to treat. As a result, it is not surprising that they would rather refer these patients than put themselves in a compromising position, not only because of their own concerns about their ability to manage the needs of the patient in their surgery, but also because of the potential impacts on their productivity or the risk of not adhering to recommended guidelines because they felt it was in the best interests of the patient.

Further research is required to understand the specific challenges clinicians have with managing those with special needs and the additional supports they feel may empower them to treat them as well as the level of complexity amongst patients necessitating specialist referral. Likewise, greater reflection is also required from the 257

public dental system about how it can address these issues where attempts to create apparent equity may inadvertently be creating greater inequity and a form of veiled discrimination for the most vulnerable members of our community.

Conclusion

Oral health professionals in the Australian public dental system may be reluctant to treat patients with special health care needs because of a perceived lack of knowledge and experience in managing their needs. This is further complicated by the under- resourcing of these health services, in terms of infrastructure, funding, and workforce. In addition, the perceived lack of priority or understanding for oral health amongst carers and the wider disability sector was identified as a barrier, with clinicians having difficulty in obtaining the relevant information to facilitate dental treatment.

References

1. Royal Australasian College of Dental Surgeons. Specialist Dental Practice 2014 [cited 2 May 2015]. Available from: http://www.racds.org/RACDSNEW_Content/Education/Specialist_Dental_Practic e.aspx. 2. Lopez Silva CP, Singh A, Calache H, Derbi HA, Borromeo GL. Association between disability status and dental attendance in Australia-A population-based study. Community Dentistry and Oral Epidemiology. 2021 Feb;49(1):33-39. 3. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 4. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 5. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Challenges associated with providing specialist dental care for individuals with special health care needs. (Manuscript submitted for publication. 2021.) 6. Alumran A, Almulhim L, Almolhim B, Bakodah S, Aldossary H, Alakrawi Z. Preparedness and willingness of dental care providers to treat patients with special needs. Clinical, Cosmetic and Investigational Dentistry. 2018;10:231-6.

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7. Dao LP, Zwetchkenbaum S, Inglehart MR. General dentists and special needs patients: does dental education matter? Journal of Dental Education. 2005;69(10):1107-15. 8. Association AD. Commission on Dental Accreditation. Accreditation standards for dental hygiene education programs. 2005. 9. Ahmad MS, Razak IA, Borromeo GL. Undergraduate education in special needs dentistry in Malaysian and Australian dental schools. Journal of Dental Education. 2014;78(8):1154-61. 10. Tsai W-C, Kung P-T, Chiang H-H, Chang W-C. Changes and factors associated with dentists’ willingness to treat patients with severe disabilities. Health Policy. 2007;83(2-3):363-74. 11. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Services Research. 2007;42(4):1758-72. 12. Dental Board of Australia. List of specialties [cited 2 May 2015]. Available from: www.dentalboard.gov.au/.../default.aspx?record=WD10%2F3238&dbid=AP&chk sum=hXwmbYjUdcXv23v2lFcC3w%3D%3D. 13. Dental Board of Australia. Dental Board of Australia Registrant data. Reporting period: 01 April 2020 to 30 June 2020 2020 [cited 20 January 2021]. Available from: https://www.dentalboard.gov.au/About-the-Board/Statistics.aspx. 14. Lim MAWT, Liberali SA, Borromeo GL. Utilisation of dental services for people with special health care needs in Australia. BMC Oral Health. 2020;20:360. 15. Rohani M, Calache H, Borromeo M. Referral patterns of special needs patients at the Royal Dental Hospital of Melbourne, Victoria, Australia. Australian Dental Journal. 2017;62(2):173-9. 16. Australian Dental Council. ADC assessment process: An overview of the ADC assessment and examinations process for overseas qualified dental practitioners, version 1.1. Melbourne, Australia: Australian Dental Council Ltd; 2018. 17. United Nations. United Nations Treaty Collection: Convention of the Rights of Persons with Disabilities 2006 [cited 20 January 2021]. Available from: https://treaties.un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_no=IV- 15&chapter=4&lang=en. 18. United Nations Enable. Convention on the Rights of Persons with Disabilities 2006 [cited 20 January 2021]. Available from: http://www.un.org/disabilities/default.asp?navid=15&pid=150. 19. Gupta TS, Stuart J. Medicine and dentistry: Shall ever the twain meet? Australian Journal of General Practice. 2020;49(9):544. 20. US Department of Health and Human Services. Oral Health in America: A Report of the Surgeon General. Rockville, MD; 2000. 21. Pradhan A, Spencer A, Slade G. Factors influencing oral health of adults with physical and intellectual disabilities in various living arrangements. Australian Dental Journal. 2007;52(S4). 22. Lim MA, Borromeo GL. Oral health of patients with special needs requiring treatment under general anaesthesia. Journal of Intellectual & Developmental Disability. 2019;44(3):315-20.

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23. Ahmad MS, Abuzar MA, Razak IA, Rahman SA, Borromeo GL. Oral Health Education for Medical Students: Malaysian and Australian Students’ Perceptions of Educational Experience and Needs. Journal of Dental Education. 2017;81(9):1068-76. 24. Ahmad MS, Abuzar MA, Razak IA, Rahman SA, Borromeo GL. Educating medical students in oral health care: current curriculum and future needs of institutions in Malaysia and Australia. European Journal of Dental Education. 2017;21(4):e29- e38. 25. Watt RG. Social determinants of oral health inequalities: implications for action. Community Dentistry and Oral Epidemiology. 2012;40(s2):44-8. 26. Nash DA. Envisioning an oral healthcare workforce for the future. Community Dentistry and Oral Epidemiology. 2012;40(s2):141-7. 27. Yap E, Parashos P, Borromeo G. Root canal treatment and special needs patients. International Endodontic Journal. 2015;48(4):351-61. 28. Christian B, Hall M, Martin R. A paradigm shift in models of oral health care: an example and a call to action. Family Medicine and Community Health. 2015;3(4):32-7. 29. Hall M, Christian B. A health-promoting community dental service in Melbourne, Victoria, Australia: protocol for the North Richmond model of oral health care. Australian Journal of Primary Health. 2017;23(5):407-14. 30. Victorian Agency for Health Information. Waiting time for dental services: State Government of Victoria; 2020 [cited 20 January 2021]. Available from: https://vahi.vic.gov.au/dental-care/waiting-time-dental-services. 31. Brennan DS, Luzzi L, Roberts-Thomson KF. Dental service patterns among private and public adult patients in Australia. BMC Health Services Research. 2008;8(1):1. 32. Spencer AJ. Narrowing the inequality gap in oral health and dental care in Australia: Australian Health Policy Institute at the University of Sydney; 2004. 33. National Advisory Committee on Oral Health. Healthy Mouths Healthy Lives: Australia's National Oral Health Plan 2004-2013. In: Australian Health Ministers' Conference, editor. Adelaide SA, Australia: Government of South Australia; 2004. 34. Oral Health Monitoring Group. Healthy Mouths Healthy Lives. Australia's National Oral Health PLan 2015-2024. Adelaide SA, Australia: COAG Health Council; 2015. 35. Australian Government Department of Health. National Partnership on Public Dental Services for Adults. 2017.

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Perspectives of the public dental workforce on the dental management of people with special needs

Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim, Sharon Liberali, and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim, Sharon Liberali, Hanny Calache, Peter Parashos and Mina Borromeo

Article status: Submitted for publication to Australian Dental Journal on 22 December 2020

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Perspectives of the public dental workforce on the dental management of people with special needs

Abstract

Background: People with special health care needs continue to have difficulties accessing regular dental care partly due to oral health professionals feeling they lack the knowledge and experience to provide treatment to these individuals.

Methods: Qualitative interviews and focus groups provided an insight into the types and nature of supports that oral health professionals working in the Australian public dental system desired and felt may improve their willingness and/or ability to treat patients with special needs.

Results: Although participants did not identify one group of patients with special needs that were more difficult to treat, they did report a feeling of being unsupported. Clinicians felt that improved training and access to ongoing education in Special Needs Dentistry, opportunities for greater support from specialists or other health professionals, either through networking or other media such as telehealth, and fostering a more supportive clinical environment, particularly in relation to appointment lengths and productivity pressures, may improve their willingness and ability to treat patients with special needs.

Conclusions: Additional support, in the form of greater interaction with specialists and reduced time and productivity pressures, may improve the willingness of oral health professionals in the public dental system to treat patients with special needs.

Introduction

Individuals with complex health issues, disabilities, and other special health care needs continue to have difficulty accessing regular dental care (1). Although limited evidence is available, what has been identified has been partly attributable to the perceived lack

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of knowledge or experience of oral health professionals in managing this patient group, leading to a reluctance to manage their more complex needs (2-4). Recent evidence also suggested that the ability of clinicians to provide the level of care required by these barriers may be limited by constraints within the public dental system (4).

In Australia, the workforce of specialists in Special Needs Dentistry remains relatively small at approximately 20. With so few specialists in this discipline, it is impossible for them to be able to manage the oral health needs of this growing population (5). As a result, there is a greater need for clinicians at the community level, dentists, oral health therapists, dental hygienists, and dental prosthetists, to play a greater role in the provision of oral health care for people with special needs.

There is growing advocacy to improve the training of oral health professionals to ensure the dental workforce appreciates the needs of these individuals and has the skills to confidently address them. However, little is known of what clinicians find challenging about managing this group of individuals and whether additional support would improve their willingness to treat those with special needs (4, 6, 7). To ascertain this information, this study aimed to understand the views of clinicians in the public dental system in relation to these issues.

Materials and methods

Clinicians working in government-funded public dental clinics were invited to participate in either a semi-structured interview or focus group to discuss their experiences in managing this group of patients. Clinics known to have initiatives or programs targeted towards addressing the needs of any groups of patients with special needs were approached to be involved in the study and participants were recruited

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through internal advertising by senior clinicians to their staff on behalf of the research team. All oral health professionals with general registration, including dentists, oral health therapists, dental hygienists, dental therapists, and dental prosthetists, were eligible to participate.

Semi-structured interviews or focus groups were conducted in person, by phone, or online video communication software Zoom (Zoom Video Communications Inc., San Jose CA, USA) or Microsoft Teams (Microsoft Corporation, Redmond WA, USA), based on the preference of the participant. A broad set of questions explored the difficulties faced by clinicians in managing this group of patients and the types of support they felt may assist them in doing so. These questions included:

(i) Do you think the clinicians you work with are generally willing to treat patients with special needs? (ii) Are there particular groups of patients you find more difficult to manage / feel less comfortable to treat? (iii) Have there been any additional supports provided to you to help with managing these patients? (iv) If you could have access to anything, what do you think would improve the ability or willingness of clinicians to treat individuals with special needs?

All interviews and focus groups were digitally recorded, transcribed, and checked for accuracy by members of the research team (ML, GB) prior to undergoing analysis. Analysis involved an initial reading of the responses to increase familiarity with the content of each transcript prior to coding of responses. Inductive thematic analysis 8 was used to complete coding in two main areas: (i) difficulties associated with treating patients with special needs and (ii) supports suggested by clinicians. Once themes were identified, they were reviewed and recoded based on similarity and to allow themes to emerge from the data. This analysis was completed using NVivo software (QSR International, Melbourne, Vic, Australia).

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Ethics approval for this project was granted by the Melbourne Dental School Human Ethics Advisory Group (Ethics ID: 1544156.2), the Tasmanian Health and Medical Human Research Ethics Committee (Ethics Ref No. H0015272), the Central Adelaide Local Health Network Human Research Ethics Committee (Ref No: 11629), and the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research (HREC Ref No. 2019-3364).

Results

Participant demographics

A total of 27 clinicians working across four different government-funded dental services participated in this study (Table 1). Ten of the clinicians were male (55.6%) and almost half (n=12, 44.4%) worked in rural and remote areas. Participants ranged in experience from 3-48 years since graduation (average: 22.9 years, SD 11.9 years) and two-thirds (n=18, 66.6%) had Australian qualifications. International qualifications included degrees from South Africa (n=4), India (n=3), Singapore (n=1), and the United Kingdom (n=1).

Table 1. Distribution of participants across registrations categories and health services

Dentists Oral Health Dental Therapists Prosthetists Northern Territory 2 0 0 (Oral Health, Top End Health Service) South Australia 8 0 0 (South Australian Dental Service) Tasmania 7 4 1 (Oral Health Services Tasmania) Victoria 4 1 0 (Carrington Health, Link Health and Community)

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Willingness to manage patients with special needs

Most participants acknowledged that there was a group of clinicians who tended to always refer patients with special needs because they had no desire to attempt any treatment on them. They felt that this was due to either a lack of interest in treating this group of patients or that the type of treatment (i.e. basic restorations, hygiene rather than more complex or aesthetic procedures) and the challenge association with completing this treatment did not provide a sense of achievement or gratification for the clinician.

“Everybody needs to be able to do exactly the same thing. But sometimes if people have no passion in it, you're not going to get the best outcome.” (Dentist 15)

“Dentists may not see a lot of glamour or victories in performing dental treatments for special needs patients as they are not applauded like their cosmetic dental treatment photos. This is unfortunate but real.” (Dentist 17)

“They probably won't go to into special needs because it's challenging and it's not easy. But others might be in there because they actually want to make a difference … something intrinsic in that person's internal value system about what makes their life worthwhile.” (Dentist 11)

All clinicians acknowledged that there were challenges to managing people with special needs which meant it was something they felt they could not do all the time. However, despite some clinicians having a personal interest in this group, they felt reluctant to publicise it for fear of being ‘relied’ upon or required to increase their caseloads with more difficult patients that would impact them both physically and/or mentally. The potential burnout experienced by clinicians from these additional pressures was recognised by clinicians who also held managerial positions.

“[Saying you’re willing to see patients with special needs] …generally means that that person will end up with a lot of referrals from the other dentists who don't want to see their special needs patients. And it might be 266

an issue that nobody really wants to put their hand up and say let me be that person because it is much more challenging work. And I'm not sure how many people would actually put their hands up for it” (Dentist 14)

“Specifically choosing an individual … can have a real impact on sustainability … as soon as you’ve singled out that person and you've invested a lot of time in that individual, and then suddenly they move on … Sustainability really drops out.” (Dentist 15)

There was also a recognition by most participants, and particularly those who also held managerial positions, that all oral health professionals needed to accept the growing complexity of patients in the public dental system. Clinicians were going to be required to familiarise themselves with the complexities such patients present because the reality was they were likely to become a growing proportion of their patient cohorts.

“A lot of the patients … 9 out of 10, they would have some form of real medical problems … patients coming in to see us are getting more and more complex … You can't send every single patient to [a specialist] to manage ... I think that they should be more aware that this is the new normal and they should be more willing to see these patients … With the ageing population I can see that there are actually a lot more of these patients that will be needing care, especially within the public system.” (Dentist 13)

Challenging patient groups

There was no single group of individuals within the special needs population that emerged from discussions with clinicians as being universally challenging. However, there were common themes that emerged from the responses in relation to different subgroups of patients. The most commonly discussed group was those with complex medical backgrounds and, in particular, oncology patients. For these patients,

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clinicians reported that challenges were primarily associated with understanding the implications of different therapies and medications and determining a way to provide dental treatment safely.

“Patients with cancer … with a lot of the medication and drugs that they are on. As dentists we're not familiar with them … so that that can be quite daunting.” (Dentist 13)

“I would say the most challenging intellectually are just the ones where they are undergoing radiation treatment or some kind of chemo or other types of medications that will affect the platelets and white blood cell levels … because I'm not familiar with all the medications.” (Dentist 14)

“The feedback that I've got is that the oncology cases are the most difficult from the point of view of delivering bad news, which is something that I think dentists don't really get a lot of training in.” (Dentist 19)

“I think most general dentists would shy away from the complexity of the medical conditions … when I was in private practice … I rarely saw people as sick … so we would be intimidated by that.” (Dentist 16)

“The biggest problem was that medication list … understanding how compromised they are, what sort of treatment we need to do, and what sort of leeway we’ve got in terms of what treatments they are having, what care can go ahead and that sort of stuff.” (Dentist 9)

”I think it's just being able …to make that decision, who can we treat safely … And also keeping a finger on the pulse as to know the changes in medications…So it's just that decision making process.” (Dentist 4)

The second most common group were those with disabilities where the main challenge centred around the ability to deliver care, although the issues of communication and consent were raised. Primarily, the challenges that were discussed were in relation to behavioural compliance, but the physical challenges of providing care for those in wheelchairs was also mentioned. 268

“Just in terms of communication … like gauging how much they're able to give consent. But for a lot of adults that I find a little bit more difficult.” (OHT 1)

“I think that the hardest ones are the patients who have severe disability. Sometimes they come in … wouldn't cooperate with us. We couldn't even get a good comprehensive examination” (Dentist 13)

“The planning phase and the delivery of service will be more challenging for a disabled patient.” (Dentist 2)

“I think with the disabled clients, the challenging part is there's no recipe ... So what works today may not work the next time.” (Dentist 8)

“In respect to the cerebral palsy patients, depending on their mobility, it's kind of that trying to decide whether to treat them in the chair or the wheelchair … So you're trying to get in there to do something for them when they can't open properly” (OHT 3)

Other groups less frequently mentioned included the elderly and those who were anxious about dental treatment.

“The very elderly. Because they are frail. They've got medical needs and where the medications are pages and pages and I think where do I begin? And physically to look in their mouth is very challenging for me.” (Dentist 12)

“In terms of treatment, the people I have the most difficulty with are those that have a great deal of anxiety … The anxiety overcomes their ability to function and to allow you to get the job done. And often you’re doing compromised treatment because of the patient's inability to sit there” (Dentist 16)

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Support that clinicians felt may improve their willingness to manage difficult patient groups

All participants acknowledged the need for better training of oral health professionals in managing those with special needs. However, they also felt that access to regular professional development around managing patients with special needs or treatment techniques was also important to maintaining or improving the understanding and skills of clinicians. Only clinicians from Tasmania discussed previous exposure to regular professional development with specialists in special needs dentistry through their employer and felt that this had been beneficial.

“In the past we had regular CPD sessions with special needs specialists … That was really helpful to keep our knowledge updated.” (Dentist 17)

“A few years ago we had … the occasional PD lecture … I definitely think that it was something that was valuable because the topics were really relevant for the staff because I think it had a dental focus because it's coming from a dentist.” (Dentist 19)

However, the most common theme amongst responses from participants revolved around being able to network with those who had greater experience in managing these patient groups. The majority (70.3%) of participants in this study had no formal relationship with a specialist or specialist unit and, for this group, the ability to get advice from specialists in special needs dentistry was the most common request.

Participants felt that the most ideal arrangement would consist of being able to work alongside a specialist or training specialists in special needs dentistry who could visit their local clinic. Some had experienced similar arrangements with specialists from other dental specialities and felt there was significant benefit to being able to ask questions and learn by observing how the specialist was able to manage patients within their local environment. Although participants acknowledged that this may not

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always be possible due to the limited specialist workforce, key themes that emerged were a desire to have someone with whom to troubleshoot problems and/or mentoring.

“It would be nice to have someone with more knowledge like a special needs specialist in the service … who can train other staff in the service and … we can consult when such cases come up … It's not that we are just clinicians and general practitioners with limited experience in special needs but I think I'm pretty sure they are willing to see such patients if they are supported.” (Dentist 17)

“Somebody that we could contact; a local specialist or even a specialist department … if anybody was available for some quick questions and guidance without having to write up a whole referral, that would make it easy … then I'd probably be more likely to try and keep the patient in in the local site.” (Dentist 14)

“I think mainly it’s just having very experienced mentors … that are more than happy to help and consult over the phone … give me advice on the spot.” (Dentist 9)

“People with knowledge, people with experience … people who understood what you were going through. And that ability early on to have some conversations, to e-mail … To ring up and liaise with them … The support of a mentor.” (Dentist 15)

The use of technology to improve their ability to either communicate with specialists or obtain the information they required to treat individuals with special needs was another common theme. Being able to access timely advice was seen as a significant factor that impacted on their willingness to proceed with treatment. Participants suggested that having resources and guidelines available to them online may also improve their ability to find protocols to treat patients. In addition, availability of

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technologies such as telehealth could improve the timeliness for treatment or referrals.

“There's definitely a place where we can use telehealth. If you have the patient and the clinician and when there's a specialist on the other line too saying ‘you can do this. Have you tried X, Y, Z?.” (Dentist 8)

“Nowadays we have teledentistry. That can be an option that we can check with the specialists face-to-face on how to manage certain patients. We may be able to manage the patients in our clinic rather than going all the way to the dental hospital.” (Dentist 13)

“I think the biggest one is like a quick reference guide … [with] just a quick search online, you can get a little bit of information … might be useful.” (Dentist 9)

“Like a call line you can ring and ask for advice.” (Dentist 10)

In addition to having additional support from specialists in special needs dentistry, participants felt they could also benefit from the opportunity to network with other dental clinicians and health professionals outside of the dental profession to work more collaboratively in managing this group of patients. This suggestion was prominent amongst those working in regional and remote areas.

“The connection with other people that are doing similar things and how they do it, because a lot of it ... is not something that is taught … for me, having links with other professionals that do the same thing and being able to get together even and brainstorm” (OHT 5)

“I suppose maybe formulate a peer group where they talk about certain cases and how they’ve managed them.” (Dentist 21)

“I think if we were all integrated and had those professional relationships it'd be great ... having those pathways would be great because they would

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also give me an opportunity to … have someone I could actually discuss it with.” (OHT 3)

The other prominent theme that emerged from the responses of participants was a desire for their work environment to be more supportive of their endeavours to manage patients with special needs. For those who either worked in or were able to refer to a hospital-based clinic, this was provided as an example of how valuable a supportive environment could be to managing those with complex needs.

“I think there are sometimes situations where I see a patient and I think this patient needs to be there because when they're in the hospital … there are the supports around … I think there's a definite benefit … to have those units.” (Dentist 18)

“I found the hospital to be a more supportive environment … mainly for the reason that it is basically located in a hospital building where I do have access to other medical professionals if I need to … I felt more secure in that environment. And also the clinic was a bit more well setup. The way that the support staff we had knew the kind of patients we were seeing there, the length of appointments. And so everyone was so ‘in the game’.” (Dentist 17)

Although limited resources, such as access to general anaesthesia or specific forms of equipment, were frequently raised, clinicians felt that they would be better equipped or more willing to manage individuals with special needs, if their clinics were more understanding of difficulties associated with treating these individuals. The key themes that emerged were more time, concern about productivity targets, and more information about the patient prior to the appointment.

“The biggest barrier to treatment for me is time … Everything else, the physical constraints you can deal with ... But if you don't have time, then none of that is going to happen.” (Dentist 20)

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“There's no allowance given for a patient’s anxiety … and I think that's where the clinicians find it frustrating. When they have to look after patients with difficulties or special needs and have to justify themselves”. (Dentist 8)

“Right now within the public system … your performance is just showing in your DWAUs (Dentist-Weighted Activity Units) … I'd rather see a special needs patient if I knew it would automatically attract a certain amount of DWAUs.” (Dentist 14)

“There's very limited consideration about people with special needs and how some of those people need more time for an appointment. This is why it's really important to ask more questions ... customer service officers might be the first point of call to our service but they don't bother to ask an open question … And that can start a whole discussion.” (OHT 4)

“When they register for service contact or make their first appointment … there’s not often a way of gaining that information … about the support that person needs … If you get more information at registration that's going to enable you to have an appointment length that’s more appropriate. But also it might give you enough time to call someone for information that they’re not sure about.” (Prosthetist 1)

Discussion

Individuals with special health care needs report difficulties with finding dentists willing to treat them (3). Many of the common concerns amongst the dentists unwilling to treat them, such as a perceived lack of experience or inadequate training or knowledge (2-4), were also reflected in the current study. However, clinicians in this study confirmed that there appeared to be some that had no desire or interest in treating this patient group, partly because of the challenges involved in providing even simple treatments, but also because they may not feel a sense of pride or achievement at the outcome. Akin to clinicians choosing not to practise certain areas of dentistry,

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some of the participants felt that a sense of ‘reward’ or ‘gratification’, either personally, within their work environment, or amongst their peers was an important aspect of clinical practice for many clinicians and that this was potentially lacking with special needs patients.

There is no doubt that treating those with special health care needs can be challenging. Clinicians have described the many barriers they experience in trying to manage the needs of these individuals, even within the public dental system (2, 4). The current study presented key themes that arose in relation to the common challenges they experienced with different cohorts. When managing those with complex health issues, clinicians found it difficult to determine how to safely provide the treatment. Although this has previously been attributed to inadequate knowledge, difficulties in obtaining adequate information from either patients, their support networks, or other health professionals have also been barriers (4). For those with disabilities, trying to manage difficult behaviours or anxiety issues are common challenges which can further be exacerbated by limited facilities and time or productivity pressures within the clinic, particularly given that these patients often require more time to complete even simple treatments 4. Given that these circumstances may call for clinicians to ‘compromise’ on what they feel may be the ‘best’ treatment, it is understandable why some may feel reluctant in embarking on treatment.

The concern is that regardless of whether clinicians necessarily find managing those with special needs ‘rewarding’ or challenging, denying them treatment continues to have a significant impact on a patient’s ability to access necessary dental care. Given that this appears to be a common problem reported by those with special health care needs, this raises questions about whether the acceptance of such attitudes by the oral health profession and the health system is a contravention of the basic human rights of these vulnerable populations (3, 9). 275

Special needs dentistry, as a dental speciality discipline, was established in recognition of this concern and to assist in addressing the needs of this growing group of individuals (10). However, that treatment was to be provided solely by these specialists was never the intention and in reality would be totally impractical. Rather than that, the speciality would assist in greater advocacy for the needs of these individuals and promote a greater understanding of their needs, not only within the oral health profession, but also the wider health and disability communities (11). The problem appears to be that a reliance of specialist services to treat the complex needs of these patients has become commonplace, when what is required is greater access to a more integrated and interdisciplinary workforce at the community level with a preventive focus (5, 12, 13). Whilst even prevention can sometimes be difficult because of the compounding effects of health and social circumstances, the cost of not even attempting to improve their oral health is likely to be dire. After all, it is not just considering the significant cost and resources to the health care system of having to facilitate more complex treatment, but the impact on their general health and well- being is likely to be significant, especially when you consider that many of these individuals already require additional therapies for speech, swallowing, and nutrition, for which teeth are vital (14).

The findings of this study provide key areas to be addressed across curricula for better training of oral health professionals, but also highlight opportunities for additional support to be provided to clinicians that may improve their willingness to treat this group of patients. In fact, many clinicians provided examples within their own workplaces that demonstrated the willingness of clinicians to manage these patients when they had the information or support they required. As was suggested by one of the participants of this study; “It's not that we are just clinicians and general practitioners with limited experience in special needs, but … I'm pretty sure they are willing to see such patients if they are supported”.

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Participants in this study identified a number of supports they felt may improve their own perceived ability and potentially the willingness of other clinicians to manage those with special needs. Whilst inadequate access to facilities and equipment in the public dental setting was raised by many clinicians, reflecting previous reports of these as barriers in the literature, most acknowledged and appreciated limited resources and funding as something that was beyond the control of their local clinical environments (4). However, participants felt that a crucial factor that could be addressed was time: not only the time to be able to treat their patients in a manner that enabled them to get the best outcome given their more complex needs, but also the time to garner adequate information to make safe choices about their patients and treatment.

In relation to the former consideration, clinicians felt that greater efforts could be made at the time of patient registration or triage to understand their needs and make appropriate length appointments to reflect these. Inclusivity and removal of barriers to access of care are key components of patient-centred care. However, although this is often considered in dentistry within the clinical context of treatment decision making, it is vital at all stages of the patient’s health care journey (12, 15). Ideally, this should include seeking further information about the additional needs of any individual. Unfortunately, patients are often asked to adapt to the constraints of the health care setting. However, although there will always be limitations to what may be possible within any environment, a concerted effort to foster a culture, particularly amongst those beyond the clinical setting itself, to understand and try to facilitate the needs of those with special health care needs, is likely to not only provide greater allowances for clinicians, but also create a health care system that meets the needs of and is inclusive of all individuals.

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For the most part, the requests of clinicians were understanding of the limitations of working within the public health system and did not seem particularly unreasonable. Primarily, most clinicians involved in this study felt that longer appointment times would help overcome many of the issues associated with the more complex needs of this group of individuals. In addition, impacts on productivity-linked funding need to be addressed. Consideration of the utilisation of case complexity tools may assist in identifying and justifying possible impacts on clinician productivity when managing these patients.

The vast majority of the suggestions offered by participants related to clinicians being able to obtain adequate information about a patient’s situation to feel comfortable to provide treatment. Clinicians recognised the deficiencies in their knowledge but sought avenues to supplement this. Although access to ongoing professional development was a theme that emerged, the most common responses related to the desire to network with others; either specialists or clinicians more experienced than themselves. Whilst structured relationships of this nature have not been looked at in terms of how they may influence the willingness of clinicians to manage particular cohorts of patients with additional health care needs, mentoring in itself is not a new concept and is not only a vital part of the development of new graduate clinicians, but has also been shown to have some influence on the career pathways of dentists (16, 17). Consequently, developing such relationships may not only be vital to changing the perspectives of clinicians and providing them with a form of ongoing support, but may also improve the desire of some to embark on the path of specialisation in this field.

Participants also recognised the potential to use technology to improve their knowledge and communication pathways with specialists. In particular, most felt that telehealth was a promising avenue not only to get the advice they needed, but also benefit from real-time specialist input into patient care. Telehealth in dentistry (teledentistry) is the use of advances in telecommunications to enhance 278

communication and the exchange of health information between health care providers (18). Although it is only a relatively new addition to the armamentarium of dental services because of the reliance on electronic health records and digital imaging, many report of its promise to reduce health care inequalities by improving access to specialist oral health care services, particularly for underserviced populations (18, 19). Thus far, the use of teledentistry in specialist care has not been trialled within the area of special needs dentistry, and there have been no comparisons between the use of such technology and conventional referrals (19, 20). Consequently, the ability for specialists to offer support to clinicians remotely for this group of patients is currently unknown. This is an area requiring further research moving forward, in relation to both the benefits and shortcomings of such technology and whether it may be a viable way to help overcome some of the other barriers experienced by patients to receiving care such as difficulties with transportation, especially for those in rural and remote areas (3).

The reality is that access to oral health care for those with special needs is a complex problem and reflective of the complex needs of these individuals. While part of the solution is better training of oral health professionals, the results of the current study suggest that there should be a greater focus on how support can be provided to clinicians. These results, however, only represent an initial exploration of this area and further research is required in order to consolidate the findings.

However, in addition to suggesting these supports, the true solutions to this issue are evident in the emerging themes from the participants’ responses: communication, collaboration, networking, and support. That is, what is required is a more integrated health care system with better communication and collaboration between health professionals, and where clinicians are supported by an environment recognising the individual needs of patients and with a focus on prevention using a common risk factor approach. The current surgical approach to addressing these treatment needs is 279

responsive and is not only inefficient but has also not been effective. New and innovative approaches that utilise all members of the dental team and the wider health and disability communities, are required to improve awareness and promote prevention throughout the life course of those with additional health care needs to truly effect change in this vulnerable and high-risk population. Regardless, a key aspect of this has to be finding ways to address the factors that impact the willingness of oral health professionals to manage those with special health care needs, and to ensure they feel supported in improving the oral health of these individuals. This study has provided an initial voice for the concerns of clinicians, but further research is required to understand how the dental profession can begin to address these issues and start to solve issues of access to care for patients with special needs.

Conclusions

Despite the growing complexity of patients in our population, there is reluctance from clinicians to manage patients with special needs. The responses of clinicians interviewed in this study suggested that this lack of willingness was due, in part, to a lack of experience, interest, or sense of achievement from completing dental care for challenging patients, but also a lack of support within the public dental system. Participants felt that having access to further training and professional development in Special Needs Dentistry and opportunities to network or more closely communicate with specialists or clinicians with more experience than themselves, may improve their willingness and ability to manage these patients. Teledentistry was seen as a key opportunity in this area. In particular, participants stated that fostering a more supportive clinical environment, including allowing longer appointments or providing concessions in relation to productivity, to account for the additional time often required to manage the more complex needs of these individuals, may also improve the willingness of clinicians to treat patients with special needs.

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References

1. Lopez Silva CP, Singh A, Calache H, Derbi HA, Borromeo GL. Association between disability status and dental attendance in Australia-A population-based study. Community Dentistry and Oral Epidemiology. 2021;49(1):33-39. 2. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal or Gerontology and Geriatrics. 2016;5(4). 3. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 4. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Clinician-perceived barriers to caring for individuals with special needs within the public dental system. (in press) 5. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Challenges associated with providing specialist dental care for individuals with special health care needs. (in press) 6. Ahmad MS, Razak IA, Borromeo GL. Undergraduate education in special needs dentistry in Malaysian and Australian dental schools. Journal of Dental Education. 2014;78(8):1154-61. 7. Borromeo G, Ahmad M, Buckley S, Bozanic M, Cao A, Al‐Dabbagh M, et al. Perception of Special Needs Dentistry education and practice amongst Australian dental auxiliary students. European Journal of Dental Education. 2017. 8. Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods. 2017 Sep 28;16(1):1609406917733847. 9. The Hague. Convention on the rights of persons with disabilities (2006). 10. Royal Australasian College of Dental Surgeons. Specialist Dental Practice 2014 [cited 2 May 2015]. Available from: http://www.racds.org/RACDSNEW_Content/Education/Specialist_Dental_Practice.aspx. 11. Ettinger RL, Chalmers J, Frenkel H. Editorial. Dentistry for Persons with Special Needs: How Should It Be Recognized? Special Care in Dentistry. 2000;20(6):224-5. 12. Hall M, Christian B. A health-promoting community dental service in Melbourne, Victoria, Australia: protocol for the North Richmond model of oral health care. Australian Journal of Primary Health. 2017;23(5):407-14. 13. Calache H, Hopcraft M, Martin J. Minimum intervention dentistry–a new horizon in public oral health care. Australian Dental Journal. 2013;58:17-25. 14. Lim MA, Borromeo GL. Oral health of patients with special needs requiring treatment under general anaesthesia. Journal of Intellectual and Developmental Disability. 2019;44(3):315-20. 15. National Academies of Sciences. Opportunities for improving programs and services for children with disabilities. E Byers FV, AJ Houtrow, editor. Washington (DC): National Academies Press; 2018 11 May 2019. 16. Shin JH, Kinnunen TH, Zarchy M, Da Silva JD, Chang BMW, Wright RF. Factors influencing dental students’ specialty choice: a survey of ten graduating classes at one institution. Journal of Dental Education. 2015;79(4):369-77. 17. Hempton TJ, Drakos D, Likhari V, Hanley JB, Johnson L, Levi P, et al. Strategies for developing a culture of mentoring in postdoctoral periodontology. Journal of Dental Education. 2008;72(5):577-84. 18. Fricton J, Chen H. Using teledentistry to improve access to dental care for the underserved. Dental Clinics of North America. 2009;53(3):537-48.

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19. Marino R, Ghanim A. Teledentistry: a systematic review of the literature. Journal of Telemedicine and Telecare. 2013;19(4):179-83. 20. Estai M, Kanagasingam Y, Tennant M, Bunt S. A systematic review of the research evidence for the benefits of teledentistry. Journal of Telemedicine and Telecare. 2018;24(3):147-56.

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Chapter 5. Supporting clinicians and improving their willingness to manage patients with special needs

The data from the two studies highlighted in this chapter explore existing support initiatives that oral health professionals felt may help them overcome barriers related to their perceived lack of training and experience in treating individuals with special needs. Greater support from specialists in special needs dentistry was crucial to these supports. The following existing support initiatives were examined:

(i) A structured network relationship: the Special Needs Network established by the Special Needs Unit of the South Australian Dental Service; and (ii) A collaboration with specialists to provide local support to clinicians working in the primary care setting; including: • The clinical placement of training specialists in special needs dentistry at community dental clinics across Melbourne, Victoria, and • The fly-in fly-out support offered by a specialist in special needs dentistry to clinicians working across the Northern Territory at Top End Health Services.

Given the lack of previous research in this area, qualitative methods were used to analyse the views of clinicians and specialists involved in these initiatives. In addition to providing insight into how clinicians responded to these initiatives, using qualitative methods allowed for a more in-depth understanding of the experiences of clinicians that could not be achieved using quantitative methods, particularly with the expected sample size. In this manner, inductive thematic analysis was used to explore emerging themes and sentiments of participants in relation to how these support initiatives influenced the willingness of clinicians to treat individuals with special needs.

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Specialist networks influence clinician willingness to manage individuals with special needs

Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim, Sharon Liberali, and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim, Sharon Liberali, Hanny Calache, Peter Parashos and Mina Borromeo

Article status: Submitted for publication to JDR Clinical and Translational Research on 12 January 2021

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Specialist networks influence clinician willingness to treat individuals with special needs

Abstract:

Background: The South Australian Dental Service’s Special Needs Network was established to support oral health professionals working within their state-wide government-funded dental service. This study aimed to investigate how a structured network relationship with specialists in special needs dentistry influenced the willingness of dentists to treat this group of patients.

Methods: Semi-structured interviews were used to explore the views of specialists and dentists involved in the South Australian Dental Service’s Special Needs Network. Inductive thematic analysis was used to determine emerging themes followed by completion of a SWOT analysis.

Results: Dentists felt that a strength of the Network was a greater sense of collegiality, particularly for those working in rural areas. Although the inability to get immediate advice regarding cases was seen as a weakness, dentists felt a more structured relationship with specialists improved communication pathways and resulted in more timely care. The ageing workforce, systemic barriers in the public dental system, such as productivity pressures and infrastructure, and the lack of support from other health professionals were seen as ongoing barriers and threats. Regardless, dentists identified the use of telehealth and visiting specialists as future opportunities. Specialists felt that the Network was a valuable resource but were sceptical about its effectiveness feeling that a limitation was the ability of dentists to recognise the complexity of cases.

Conclusions: Ongoing support from and communication with specialists in special needs dentistry through a structured network improved the perceived ability and willingness of dentists to treat patients with special needs. 285

Knowledge transfer statement: This research suggests that providing greater support to dentists may help overcome some of the current barriers to access to care experienced by individuals with special needs.

Introduction

Australians with disabilities and complex health issues continue to have poorer oral health and dental attendance compared with others in the population (1-3). Some of these problems have been attributed to oral health professionals being unwilling to manage individuals with special needs (4). Whilst changes in primary dental degrees may address issues associated with knowledge and skills in future health professionals, this does little to assist current practising dental practitioners (5).

Previous studies have reported that oral health professionals may be more willing to provide care for individuals with special needs if provided with additional support to overcome the perceived gaps in their clinical skill set and knowledge (6, 7). In particular, clinicians discussed a desire for access to continuing professional development, the ability to network with and seek advice from other clinicians skilled in special needs dentistry, and improved communication and working relationships with specialists in this field (7).

The Special Needs Network was established by the Special Needs Unit (SNU) of the Adelaide Dental Hospital and management of the South Australian Dental Service (SADS) to support oral health professionals working throughout their state-wide government-funded dental service. The aim was to learn from hub-and-spoke models used in other parts of the world and adapt a similar model for the local challenges of their dental system.

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This Network provided an avenue to upskill clinicians and facilitate ongoing support. Senior clinicians who expressed an interest in being involved in the Network received additional training through a week of combined didactic presentations and clinical sessions supervised by specialists in special needs dentistry. These clinicians were then provided with ongoing support through regular meetings of the Network that included lectures from specialists and case discussions, access to evidence-based clinical protocols, and enhanced communication pathways between dentists in the Network and specialists at SNU. Given the challenges of providing dental care for a population dispersed across a large geographical area, the aim of the Special Needs Network was essentially to foster a state-wide dental service able to provide greater access to care closer to home but also to allow for timely escalation to specialist services when required. As a result, the Network enabled specialists to begin this process by de- escalating the ongoing care to oral health professionals in the Network and wider community.

The Special Needs Network was designed to promote a more integrated model of care for managing the oral health care of individuals with special health care needs by implementing many of the supports that oral health professionals have reported may increase their willingness to manage these individuals (7). However, little has been reported in the literature about how such initiatives influence the perceptions of oral health professionals towards managing these patients. Thus, the aim of the current study was to investigate the views of both specialists and general dentists involved in the Special Needs Network to determine whether being part of the structured network relationship influenced their willingness to treat patients with special health care needs. It was anticipated that although there were likely to be areas where dentists desired additional support, the structured network relationship would improve their willingness and capability to treat individuals with special needs.

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Materials and methods

Clinicians involved in the Special Needs Network, including past specialists from the SNU at the Adelaide Dental Hospital, and dentists from the Community Dental Service of the SADS were invited to participate in a semi-structured interview or focus group to discuss the impact of being part of the Special Needs Network on their experiences in managing the oral health care of individuals with special needs.

Interviews/focus groups were conducted in person, by phone, or using online video conferencing software and followed a broad set of questions, which included themes relating the successes and shortcomings of the Special Needs Network (Figure 1). Questions designed were broad and open ended to reduce reflexivity in the interview process.

The interviews were digitally audio recorded and transcribed professionally. Transcripts were cross-checked for accuracy against the original recordings by a member of the research team. Qualitative analysis used a grounded theory approach with responses coded, based on whether they expressed positive or negative sentiments before using inductive thematic analysis to develop a SWOT (strengths, weaknesses, opportunities, threats) analysis (8). Given the lack of previous research in this area, this approach was considered most appropriate to enable the views of participants to dictate the potential emerging themes (8). Coding was completed using qualitative data analysis software (NVivo, QSR International, Melbourne Vic, Australia).

Ethics approval was obtained from the Melbourne Dental School Human Ethics Advisory Group (Ethics ID: 1544156.2) and the Central Adelaide Local Health Network Human Research Ethics Committee (Ref No: 11629).

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Figure 1: Question guides for interviews and focus groups

General dentists

1. Can you tell me a bit about yourself and where you work? 2. Can you tell me about what groups of patients with special need you commonly treat at your clinic? 3. Have there been any additional supports provided to you to help you manage these patients? 4. Can you tell me a bit more about the Special Needs Network? a. Can you describe how it works? b. How have you found being part of the Network? c. What have been the benefits / shortcomings? d. Has it changed your perception towards treating patients with special needs? 5. If you could have access to anything else that might improve your ability to manage patients with special needs, what would it be?

Specialists in Special Needs Dentistry

1. Can you tell me a bit about yourself and your role at the Special Needs Unit? 2. Can you tell me about the Special Needs Network? a. Do you feel it has been effective? b. Do you think it has improved the willingness of dentists to treat these patients? 3. Can you think of how the Network could be improved?

Results

Demographics

A total of ten clinicians participated in this study comprising two retired specialists in special needs dentistry and eight general dentists working throughout the SADS. The eight dentists were all senior dentists within their respective clinics, representing a 72.7% response rate within the Special Needs Network. These eight dentists worked in dental clinics across the state with the majority from regional and remote localities (n=6, 75%). 289

Views of general dentists in the Special Needs Network

The responses from general dentists indicated that they all managed individuals across the spectrum of special needs but that the challenges differed based on the patient groups, with no single group presenting more of a challenge than others.

With regards to the Special Needs Network, the responses of the dentists were generally positive (58.8%) with a general consensus that the network was a valuable support resource for clinicians. All dentists involved felt that it improved their own ability to treat individuals with special needs, but also improved the willingness and ability of other clinicians to provide care to individuals with special needs at their local clinics because of the additional support they themselves were able to provide.

“Staff are happy now to attempt knowing that a Special Needs Network member is able to help.” (Dentist 8)

“Being out in a regional area, the patients are often even more excited because …. They're more than happy just to try and treat here and very grateful for whatever we can do locally.” (Dentist 2)

A SWOT analysis of responses revealed several key emerging themes according to the responses from dentists interviewed (Figure 2).

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Figure 2. SWOT analysis of prominent themes from analysis of the views of general dentists involved in the Special Needs Network

Sense of collegiality Access to immediate specialist advice Communication and referral pathways STRENGTHS WEAKNESSES

Use of technology Ageing workforce

Visiting specialists OPPORTUNITIES THREATS Systemic barriers in public system

Younger clinicians Support from other health professionals Tool for advocacy and carers

Strengths Clinicians developed a sense of being part of a larger ‘team’ working together towards the same goal of improving access to care for individuals with special needs, which was a key strength of the Network. In addition, in regards to support, dentists felt that the main strength of the Network was that it provided a more formal pathway for the sharing of up-to-date knowledge, the ability to learn from the experience of others as well as improved communication in providing a pathway to seek advice from specialists or other clinicians who were members of the network.

“In the meetings … they present a few topics and there are protocols that are available … people are sharing their experiences and because it's getting discussed by specialists as well as general dentists … you learn more and … we learn from one another. (Dentist 8)

“Publications or the paperwork…made available to us…it just helps you connect some dots that you might not otherwise connect and think of questions, and think of concerns that we might need to double check on.” (Dentist 2)

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“Sometimes you can’t think about a solution and they will come up with a different idea.” (Dentist 6)

“I feel that we have a really good back-up and communication.” (Dentist 3)

Furthermore, clinicians felt that access to care for people with special needs had improved due to better communication, allowing for more complex cases to be attempted locally with the additional support or avenues for escalation to specialist care in a more timely manner.

“What I think is really great about the network is also that it was never an expectation that we are now supposed to be treating all of these patients …this has more to do to nail out and hammer out the groundwork to be able to streamline a referral for a patient through to the Dental Hospital and thereby save them trips and that kind of stuff. And then also to iron out unnecessary referrals; things that we could look at locally and treat here…that's been a really successful part of a network. It's not that it suddenly creates a whole lot of special needs dentists in South Australia that are all knocking out great treatments…It's about the network.” (Dentist 4)

Weaknesses The responses from participants identified one primary weakness within the network: access to immediate advice due to the reliance on a single specialist to provide this support.

“I guess the main time I have a problem is when I have a medically compromised patients who needs emergency care on the day and you want some information … now … I have had difficulty trying to go ring and speak to somebody … to get anyone to answer the phone because they've all got patients.” (Dentist 6)

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“I think most of my communications have been with [the specialist]. And I think that's perhaps something we should look at as just knowing who else we can contact … to make sure we are making use of all the people that are based at the dental hospital and not just [the specialist] the whole time” (Dentist 4)

Other concerns that were raised by individual participants were the relative value of different supports within the network, in particular, the Network meetings, and that the Network itself did not address the preferences of some patients to be treated at the specialist clinic.

“At the risk of sounding rude I sometimes think that the meetings, for me, are more just to catch up with the people … I get more benefits out of what happens outside of the meetings.” (Dentist 4)

“Initially we did get some clients who were resistant and we had to refer back…but [the specialist] will try to persuade them that they have to be seen at … a local clinic.” (Dentist 1)

Potential threats and barriers Dentists in the Network identified several potential threats to its ongoing success both from within and outside of the Special Needs Network itself. Within the network, the most significant threat that was identified related to the need for generational change or succession planning as many of the original clinicians involved approached retirement age.

“I think when this network started, the clinicians who were offered training in SNU (Special Needs Unit) were all older. And now … I'm about to retire. People are getting to that stage of their life where they're leaving … Okay we have experience. We've got lots and lots of ways of dealing with patients … But I think we should be getting lots of young dentists into the

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network and letting us oldies … give experience, feedback to younger dentists.” (Dentist 7)

Within the wider public dental system, access to adequate resources was raised as a significant concern. This varied between dentists and their local settings but common themes that emerged included workforce, productivity pressures, facilities and equipment, and clinic infrastructure.

“The other sort of thing … in a regional area is staffing. We cannot meet the needs of our client base never mind even factoring in our disability cohort or our medically-compromised cohort… There's just no time … there's not enough staff.” (Dentist 4)

“I think time constraints are the biggest factor … we've got productivity goals that were supposed to be meeting. That's just never going to come anywhere near those if you're treating special needs patients.” (Dentist 4)

“We've had the ability to offer general anaesthetics for quite some time…but that has just been withdrawn. So that does make this difficult.” (Dentist 3)

“Definitely there will be physical barriers because we don't have a big wheelchair lifter and the clinic that I work in, the lift is not big enough for electric wheelchairs. So recently we had a bariatric client who was 240 or 250 kilos. So we know that he needs care but I couldn't bring them in.” (Dentist 8)

Further to issues related to providing care at local community clinics, the dentists felt that difficulties with travel to the city and with the infrastructure at specialist facilities influenced the willingness of patients to accept referrals for more complex care particularly with a growing expectation that care could be provided at local clinics. This

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thereby reinforced previous comments regarding resourcing of community dental clinics.

“But there are cases that sometimes … when we try and refer them in to ADH (Adelaide Dental Hospital) but they complain that is hard to find parking in ADH. They refuse to go and come back.” (Dentist 1)

External to the Network and the public dental system, the dentists felt there were two main threats to the willingness of clinicians to provide care to individuals with special needs. These related to difficulties associated with contacting medical practitioners for relevant and timely advice or information pertaining to anticipated care and the perceived lack of priority placed on oral health within the disability sector and wider health.

“It's really difficult to get the information from a [medical] specialist…I've actually I had to hound them to get some information about the condition that the patient is suffering from and how safe it is to go ahead with dental treatment or those sorts of things” (Dentist 7)

“What I found really the most difficult thing is getting accurate histories from clients…Getting in touch with specialists and having the cooperation in wider health community; general practitioners, specialists. Some are really really good. Although it's quite flippant or variable.” (Dentist 3)

“The carers are not doing their part … it's quite a waste of time when we see the patient and then we teach different carers because they have different carers at different visits … they are not caring the way that they should be.” (Dentist 1)

Opportunities Dentists within the Network felt there were a number of opportunities to overcome weaknesses and potential threats that they identified. Many of these related to

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improving communication and collaboration in the management of their patients. For example, dentists recognised that there was a limited specialist workforce and that providing immediate advice could be shared with specialists and trainees within the unit.

“I think that perhaps something we should look at is just knowing who else we can contact because I think every … email goes straight to [a single specialist]. So I think the network needs to network better, to make sure we are making use of all the people that are based at the dental hospital.” (Dentist 4)

“I find talking is much, much better for me to actually speak to someone. Because I will send an e-mail and you think ‘Oh what do I mean by that?” (Dentist 6)

Further to this, several clinicians felt that technology, and in particular the use of telehealth, could improve communication particularly the possibility of joint consultations between specialists and community dental clinics.

“I would like … probably in your more complex cases … set up a consult and just have someone in the background on a Zoom line… that can say ‘no hang on, let's go down this pathway instead of that pathway. Let's try and find this information. Can you have a look at this and tell me what you think of that?’. (Dentist 4)

“One of the things that came up that I thought would be useful is when we are sharing patients …. If I had the opportunity to listen in on that conversation, then it would probably make my things work a lot smoother and vice versa.” (Dentist 2)

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In addition, some clinicians discussed the possibility of having visiting specialists attend their local clinics citing the potential for their own clinical teams to learn from working alongside specialists or specialist trainees, but also to reduce the need for patients to travel for specialist care.

“I think you would actually encourage or lower the barrier for other clinicians. To get themselves involved, become comfortable with treating more complex cases rather than saying or rather them feeling the opposite. I think it'll be a benefit to have them there sort of visiting and sort of having that contact because everyone's got a particular patient that they're a little bit concerned about for whatever reason.” (Dentist 2)

“I would like to see a visiting specialist ... We see how they treat them and makes it easier for us to do that. I believe in that thing… monkey see, monkey do. You can see some things you can try it.” (Dentist 6)

“To be frank, I think it would work even better if the postgrad students…for them to come and work at the satellite clinic. So, you know, when you see someone work you, you pick up those little tricks or find nuances of how you manage and how do you talk with the patient…And then if there's a roster… then we can roster different people from the network or other clinicians so they actually are next to them observing them and learning.” (Dentist 8)

Many members also felt that there was a significant opportunity to involve younger dentists in the Network because of their improved training in Special Needs Dentistry and that this would help overcome concerns about the ageing workforce in the Network.

“I've been pleasantly surprised at the ability of a couple of young dentists that are working with us. And also their willingness to investigate and find out what they don't know.” (Dentist 2)

“I think it would be really useful if the Special Needs Network incorporated a lot more of the young dentists coming into the prime of their practice. I

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actually think that the young dentists are the ones that are going to be useful in treating these patients in the future.” (Dentist 7)

Dentists also felt that the Network offered opportunities to create awareness and advocate for oral health of patients with special needs, particularly where they felt these issues in their local communities were reflective of wider problems throughout the state. An example that was discussed in the focus groups were concerns about the aged care sector and greater engagement with other health professionals.

“I would love the organisation to ... broaden out a bit. I feel sorry sometimes for our aged care patients because I don't actually manage them all. I would like to see more resources go into that.” (Dentist 6)

“I think somehow incorporating the wider medical field, including GP, specialists.” (Dentist 3)

Views of specialists about the Special Needs Network

In general, specialists viewed the Network as a valuable resource, particularly for patients to receive ongoing maintenance and preventive care at clinics closer to home and ensure that specialist services were able to provide timely care for new referrals.

“The Special Needs Network, … is great because…you’re disseminating knowledge, giving access to experience, and so we are reducing the load at the hospital so we can specialise on the harder. And keep the waiting list down” (Specialist 1)

However, specialists were more sceptical about whether it had necessarily improved the willingness or ability of clinicians to manage patients with disabilities, although

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they admitted this primarily reflected their own experiences in seeing either certain patients being referred back to the clinic or new referrals with limited complexity.

“With the disability side, I think that we could be receiving less referrals … (but) we still get referrals from some dentists in the Special Needs Network of patients I think they should be able to cope with.” (Specialist 1)

A key concern of specialists was that they felt general dentists may not recognise the complexity of cases and that improving communication and the ability to support dentists was vital to the success of the Network in not only improving access to care, but ensuring appropriate care for individuals with special needs.

“So do I think Special Needs Network is a good thing? I think it is admirable for maintenance. I think it is absolutely useless for consultation unless …. you can guide your general practitioner through the intricacies. And you have to be available for any problem that that practitioner then gets with the patient. You need to be available for ongoing advice … They won't recognise that complexity.” (Specialist 2)

As a result, specialists felt that the Network needed to continue to adapt to the needs of clinicians within the Network over time. At the present time, they felt this meant embracing technology to offer more direct advice and support to members of the Network to ensure they were receiving the appropriate level of care.

“I think that if … you've got a patient … and you've got all the x-rays and everything else, and you set up a video health conference with yourself, with the patient and the specialist. And you work out a treatment plan. That would be brilliant … And I think I think it needs to step up and that it needs to become a…specialist network remote consultation.” (Specialist 2)

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Discussion

The Special Needs Network was established by specialists and management of the SNU at the Adelaide Dental Hospital and the SADS as a way to provide ongoing support to oral health professionals working throughout their state-wide public dental service in recognition of the challenges facing the organisation which included, but were not limited to, trying to meet the needs of a growing group of eligible patients, some travelling significant distances from across the state, with a relatively small specialist workforce. At its inception, senior clinicians from across the dental service were asked to express their interest in being involved in the Network and were subsequently upskilled following a week of combined didactic presentations and supervised clinical sessions at the SNU. Regular meetings conducted three times per year have provided opportunities for members of the Network to update their knowledge through lectures from specialists, case discussions which enable learning from each other, as well as facilitating better communication between the specialists and Network clinicians. Network members also have access to a suite of evidence-based clinical protocols, which provide detailed information on the management of patients with special needs. The desire was to have upskilled clinicians working across the state who were able to provide oral health care to patients with less complex special needs locally with the ongoing support of specialists, enabling patients to receive care closer to home with the support of the specialist unit in a hub-and-spoke model of care.

The results of the current study provided an insight into the views of clinicians, including both dentist and specialist members of the Network, towards the supports provided and how these influenced the perceptions of dentists towards managing individuals with special needs. Overall, the responses of dentists were positive. All participants felt that being part of the Network improved their own willingness and perceived ability to manage this group of patients, but also that it improved their ability to support other clinicians working with them. Although the current study may not be able to attest to these changes in respect to referral patterns, the impact of the

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Network has been demonstrated in the profile of patients managed at SNU in comparison to other specialist units in Australia, with the lower proportion of disability patients attending SNU reflective of those treated instead at local community clinics as part of de-escalation of their ongoing care and maintenance (9).

The ability to improve access to care locally was a key objective of the Network. A challenge faced by the SNU was that it provided specialist care to a patient cohort spread across a large geographical area; a problem that is not uncommon in countries like Australia where services are often concentrated in metropolitan areas but also very different to other countries where hub-and-spoke models of care are effective in their health systems within a dense population area (10, 11). As a result, there was a greater need to ensure the confidence and competence of dentists, many of whom worked in remote and regional areas, because escalation of care may result in patients, and often their families or carers, needing to travel several hours to Adelaide for specialist services.

Given that perceived lack of training and knowledge are reasons commonly reported by dentists in relation to their reluctance to manage individuals with special needs, and supported by the experience of patients (4, 6), this Network was able to overcome these by providing an avenue for continuing professional development as well as improved communication between general dentists and specialists. In particular, what appeared to be a vital component was the ability for dentists to ask questions of more experienced clinicians when they were uncertain about aspects of patient care.

To some degree this concern was shared by specialists. An emerging theme from the current study was that regardless of the willingness of oral health professionals to attempt to treat this group of individuals, what was vital was a recognition and appreciation of the complexity of these patients in order for them to receive 301

appropriate care. Establishing this Network never aspired to upskill clinicians to the same level as specialists, but rather promote a degree of shared custodianship of the care of these individuals with special needs such that more complex treatments that may be beyond the scope of general dentists can be provided by specialists as required while their general preventive care is provided at a local level. As a result, vigilant support from and communication with specialists was always seen as a necessary, significant, and ongoing component of the Network.

A key challenge that remained, however, was how to overcome potential problems associated the limited specialist workforce. The small number of specialists was part of the justification for the establishment of the Network, and although it was not necessarily identified as a weakness by the dentists involved, it was somewhat reflected in many comments relating to time-sensitive communications with specialists and the ability to get immediate advice. This, like many other barriers to providing care to individuals with special health care needs, such as limited equipment and facilities, reflected commonly reported barriers that have been identified in the literature (6).

Unfortunately, the limited specialist workforce in special needs dentistry is not a problem isolated to South Australia, with the number of registered specialists only marginally increasing since the recognition of the specialty in Australia in 2003 (12, 13). Likewise, many other parts of the world, including the USA and Canada, are yet to recognise the specialty, leading to concerns about how clinicians can seek appropriate advice in these settings. This is particularly important given the general lack of understanding amongst other health professionals and the difficulties experienced by many oral health professionals trying to contact them; an issue reflected in the current study and the existing literature (6, 14, 15).

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Interestingly, the responses of dentists in this study raised issues in relation to engaging with and obtaining information from other health professionals and carers in the disability sector. In addition to specialists in special needs dentistry, communicating with others involved in the care of patients may be seen as an avenue for advice and support with dentists expressing interest in this being an opportunity within the Network. Unfortunately, previous studies have suggested the knowledge and understanding of medical professionals of dental issues and procedures is generally lacking (16, 17). As a result, whilst improving the oral health knowledge of other health professionals and carers should be seen as a priority, improving the training of dentists in special needs dentistry and ensuring they have adequate support within the dental community continue to be of vital importance.

Regardless, possibly a true indication of the success of the Network was the fact that participants were able to identify opportunities to overcome such threats and weaknesses moving forward. Many of these reflected other possible supports that have been discussed in the literature (7). In particular, embracing new technology, and the possibility of using telehealth to support clinicians was seen as an innovative way to communicate and provide direct and real-time interaction between the patient, dentist, and specialist. Although this is an area that has attracted significant attention and investment in response to the COVID-19 pandemic, its use in the dental setting remains relatively novel and requires further research (18).

In addition, dentists also raised the prospect of trainee specialists visiting their local clinics to support clinicians. This was seen as a chance for mentoring of local dentists and to see how more experienced clinicians were able to adapt to working in the community setting, but also potentially beneficial for future specialists to understand that challenges faced by these dentists. Initial results from other studies are promising and suggest that having dentists work alongside specialists or trainee specialists in their clinics may be another avenue to provide support and improve the willingness of 303

clinicians to manage this often complex patient cohort (19). In response to this feedback, the Network has now been expanded to include placements of specialist trainees in these locations as an additional support for clinicians.

However, despite these initiatives encouraging a greater proportion of care to be provided at the community level, the implementation and use of such initiatives requires further research and investigation into the appropriateness in different settings. A strength of implementing the Special Needs Network in a state-wide dental service such as the SADS was that it offered mutual benefits to all parties involved. However, in other states where dental services are provided by local area health networks, there remain questions about how such supports may be funded. In particular, the issue of who will provide remuneration for specialists providing support and how funding may be allocated when there appear to be limited resources in this area already, needs to be considered alongside the potential impacts on funding and productivity if specialists are taken away from their clinical duties to provide telehealth consultations or travel to other clinics, many of which may be in remote or rural areas.

However, as much as specialist services, such as the SNU, can adapt in such ways to the changing needs of their patients and the wider dental system, dental teams at the community level will also need to consider how best they can modify the use of their current workforce and integration with other aspects of their local health systems and communities to better address the needs of this complex group of patients. Although an improved willingness of clinicians to manage this group of patients at the community level may be a start, health services may require further justification to consider re-allocation of resources which enable the development of suitable facilities and equipment in community dental clinics to support ongoing and enhanced access to care for people with special needs in the community setting.

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Although the results of this study continue to reinforce previous findings in the literature with regards to the need for better training of oral health professionals in managing individuals with disabilities and complex health needs, it also highlights the important role specialists can play in providing ongoing support to clinicians as a way to improve their willingness to manage this group of individuals and begin to address access to care issues (5, 20). With current funding models, there may be little incentive to consider how health care service models can be adapted to provide more integrated and preventive care despite this offering significant benefits for patients and their health (21, 22). This further highlights the importance of oral health awareness and education of all health professionals and carers to support basic preventive measures and assist with addressing the oral health disparities in these populations.

The current study demonstrates how a small specialist workforce managed to maximise the use of a relatively limited pool of resources to develop a better equipped and integrated dental service that removed many barriers to access of timely care for individuals with additional health care needs. And whilst the results of this study require further exploration with the context of this Network and the responses of clinicians in the wider state-wide service, further research is also required into the success of various supports so that services can adapt these to the needs of their own workforces and health systems. The results do, however, reinforces the vital role of specialists and more experienced clinicians in developing and driving these initiatives to enable support for non-specialist clinicians in their local communities and health care systems and present a compelling case to other countries about the important role the specialty of special needs dentistry can play in ensuring timely and equitable access to oral health care for individuals with special needs.

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Conclusions

Individuals with special needs continue to experience barriers to accessing regular dental care in part due to the lack of willingness of clinicians to treat them. This study explored the potential for a structured relationship between specialists in special needs dentistry, in the form of a Special Needs Network, to overcome issues related to lack of experience and training reported by dentists.

The results of this study provided insights into the views of dentists and specialists involved in the Special Needs Network. Despite some reservations expressed by specialists as to the effectiveness of the Network as a support for clinicians, the responses of dentists were overwhelmingly positive. Despite some potential threats and weaknesses within the Network identified by clinicians, particularly in relation to obtaining immediate advice regarding cases, all dentists involved felt that being part of the network not only improved their perceived willingness and ability to manage patients with special needs, but improved their perceived ability to support other clinicians thereby improving access to care at a local level. As a result, support initiatives, such as a structured network relationship with specialists, may help reduce barriers to care for patients with special needs by helping overcome perceptions of inexperience and/or insufficient training amongst clinicians.

Acknowledgements:

Mathew Lim would like to acknowledge the support provided by the Australian Government Research Training Scholarship and the Rowden White Scholarship from the University of Melbourne.

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Declaration of Conflicting Interests:

Sharon Liberali was the Director of the Special Needs Unit at the Adelaide Dental Hospital; the specialist unit involved in this study. All other authors have no conflicting interests to declare.

References

1. Pradhan A. Follow-up of Special Olympics athletes post oral health screenings. Journal of Disability and Oral Health. 2015;16(2):49-53. 2. Chalmers JM, Carter KD, Spencer AJ. Oral diseases and conditions in community- living older adults with and without dementia. Specical Care in Dentistry. 2003;23(1):7-17. 3. Lopez Silva CP, Singh A, Calache H, Derbi HA, Borromeo GL. Association between disability status and dental attendance in Australia-A population-based study. Community Dentistry and Oral Epidemiology. 2021;49(1):33-39. 4. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 5. Ahmad MS, Razak IA, Borromeo GL. Undergraduate education in special needs dentistry in Malaysian and Australian dental schools. Journal of Dental Education. 2014;78(8):1154-61. 6. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Clinician-perceived barriers to caring for individuals with special needs within the public dental system. (Manuscript submitted for publication. 2021.) 7. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. The perspectives of the public dental workforce on the dental management of people with special needs. (Manuscript submitted for publication. 2021.) 8. Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods. 2017;16(1):1609406917733847. 9. Lim MAWT, Liberali SA, Borromeo GL. Utilisation of dental services for people with special health care needs in Australia. BMC Oral Health. 2020;20:360. 10. Dougall A, Fiske J. Access to special care dentistry Part 1. Access. British Dental Journal. 2008;204(11):605-16. 11. Lewis D, Fiske J, Dougall A. Access to special care dentistry, part 7. Special care dentistry services: seamless care for people in their middle years–part 1. British Dental Journal. 2008;205(6):305-17. 12. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Challenges associated with providing specialist dental care for individuals with special health care needs. (Manuscript submitted for publication. 2021.)

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13. Dental Board of Australia. Dental Board of Australia Registrant data. Reporting period: 01 April 2020 to 30 June 2020 2020 [cited 20 January 2021]. Available from: https://www.dentalboard.gov.au/About-the-Board/Statistics.aspx. 14. CDA-ACFD Special Care in Dentistry Working Group. Meeting the needs for special care dentistry in Canada. A Report to the Canadian Dental Association and the Assocation of Canadian Faculties of Dentistry. 2015. 15. Waldman HB, Perlman SP. A special care dentistry specialty: sounds good, but…. Journal of Dental Education. 2006;70(10):1019-22. 16. Cohen LA, Bonito AJ, Eicheldinger C, Manski RJ, Macek MD, Edwards RR, et al. Comparison of patient visits to emergency departments, physician offices, and dental offices for dental problems and injuries. Journal of Public Health Dentistry. 2011;71(1):13-22. 17. Yeng T, O’Sullivan AJ, Shulruf B. Medical doctors’ knowledge of dental trauma management: A review. Dental Traumatology. 2020;36(2):100-7. 18. Marino R, Ghanim A. Teledentistry: a systematic review of the literature. Journal of Telemedicine and Telecare. 2013;19(4):179-83. 19. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Dental partnerships improve the willlingness of clinicians to treat patients with special needs. (Manuscript submitted for publication. 2021.) 20. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 21. Calache H, Hopcraft M, Martin J. Minimum intervention dentistry–a new horizon in public oral health care. Australian Dental Journal. 2013;58:17-25. 22. Christian B, Hall M, Martin R. A paradigm shift in models of oral health care: an example and a call to action. Family Medicine and Community Health. 2015;3(4):32-7.

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The impact of collaboration with specialists on the willingness of oral health professionals to treat people with special needs

Authors: Mathew AWT Lim, Sharon AC Liberali, Hanny Calache, Peter Parashos, and Gelsomina L Borromeo

Author contributions:

Study design: Mathew Lim, Sharon Liberali, and Mina Borromeo

Data collection: Mathew Lim

Data analysis: Mathew Lim and Mina Borromeo

Manuscript: Mathew Lim, Sharon Liberali, Hanny Calache, Peter Parashos and Mina Borromeo

Article status: Submitted for publication to Qualitative Health Research on 17 January 2021

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The impact of collaboration with specialists on the willingness of oral health professionals to treat people with special needs

Abstract:

Individuals with special health care needs continue to experience difficulties with accessing regular dental care. This has largely been due to clinicians feeling they lack the training and experience to manage their needs. The aim of this study was to determine whether working closely with specialists in special need dentistry influenced these perceptions and the willingness of clinicians to treat patients with special needs. Semi-structured interviews were conducted with specialists and clinicians involved in these support initiatives. The views of all participants towards these supports were positive with clinicians feeling it not only offered them opportunities to learn from the specialist, but also increased their willingness to treat individuals with special needs and the timeliness and quality of care they were able to provide. Overall, working alongside specialists in special needs dentistry improved the willingness of clinicians to provide care for individuals with special health care needs.

Introduction

Oral health and access to regular dental care remain ongoing concerns for individuals with disabilities and complex health issues (1). In many cases, these individuals are at higher risk of oral conditions, such as dental caries and periodontal disease, due to the confounding effects of their general health, polypharmacy, other impairments, and dependence on carers and family to assist with activities of daily living including daily oral health care. These patient factors can then be further complicated by the lack of willingness of many general dentists to manage individuals with these more complex needs (2, 3).

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A barrier for many oral health professionals is their perceived lack of knowledge or training in managing those with special needs (2-4). Clinicians have suggested that receiving additional support may improve both their willingness and ability to treat these individuals and reduce their reliance on referral to specialists where these patients often encounter long waiting lists (4, 5).

One such support that clinicians have suggested is the ability to work closely or alongside specialists at their local clinics, feeling that this may facilitate opportunities for mentorship, observation, consultation, and advice to overcome some of their own reservations about treating patients with special needs (6, 7). Several dental clinics have explored such initiatives as supportive measures for clinicians, but no research has been completed to understand the potential success of such programs.

The aim of this study was to determine whether having a specialist in special needs dentistry visit and work closely alongside other clinicians would affect their willingness to treat individuals with special needs. It was hypothesised that specialist support overall would positively influence and improve the willingness of the clinicians receiving support to attempt treatment rather than immediately considering referral to specialist services.

Method and Materials

Qualitative methods, using a grounded theory approach, were used to explore views associated with placing specialists or clinicians with additional training in special needs dentistry into clinics to support other clinicians in managing individuals with heightened health care needs (8). In particular, this study was focused around weekly clinical placements of specialists-in-training in special needs dentistry from the University of Melbourne at Carrington Health and Link Health and Community, two

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community dental clinics in Victoria, Australia, and the fly-in fly-out support and advice offered by a specialist in special needs dentistry to Top End Oral Health Services in the Northern Territory, Australia.

Clinicians were invited to participate in a semi-structured interview to discuss their experiences of managing the oral health care of individuals with special needs. A promotional flyer was distributed to clinicians by the senior dentist or clinic manager and interested individuals asked to contact the research team. Specialists and specialists-in-training in special needs dentistry, dentists, oral health therapists, dental hygienists, dental therapists, and dental prosthetists who were either involved in the delivery of, or exposed to, these support programs were eligible to participate.

The interviews were conducted in person or by phone or similar media, depending on the preference of the participants. A question guide was developed by the research team (Figure 1) which used open-ended questions to determine the views of participants towards the additional supports provided and if it impacted on the willingness or ability of clinicians to treat patients with special needs. Participants provided written informed consent for their involvement.

Prior to undergoing analysis, all interviews were digitally recorded, transcribed, and checked for accuracy. Analysis involved an initial reading of the responses prior to coding of emerging themes and sentiments using inductive thematic analysis and the qualitative data analysis software, NVivo (QSR International, Melbourne Vic, Australia) (8).

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Ethics approval was granted by the Melbourne Dental School Human Ethics Advisory Group (Ethics ID: 1544156.2) and the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research (HREC Ref No. 2019-3364).

Figure 1: Question guides for interviews

General dentists 1. Can you tell me a bit about yourself and where you work? 2. Can you tell me about what groups of patients with special need you commonly treat at your clinic? 3. Have there been any additional supports provided to you to help you manage these patients? 4. Can you tell me a bit more about having the specialist / special needs postgraduate working with you? 5. Can you describe how it works? 6. What have been the benefits / shortcomings? 7. Has it changed your perception towards treating patients with special needs? 8. If you could have access to anything else that might improve your ability to manage patients with special needs, what would it be?

Specialists in Special Needs Dentistry 1. Can you tell me a bit about yourself and your role? 2. Can you tell me about working alongside other clinicians at …? 3. Do you feel it has been effective? 4. Do you think it has improved the willingness of dentists to treat these patients? 5. Can you think of how this arrangement could be improved?

Results

A total of 10 clinicians agreed to participate in this study. Three participants were classified as ‘specialist’ because of their involvement in providing the support to other clinicians. This included one specialist in special needs dentistry and two training specialists in special needs dentistry. Remaining participants were ‘clinicians’ (6 dentists and 1 oral health therapist) with a range of experience (average years since graduation: 13.7, range: 3-23 years). Three of these clinicians had combined clinical and managerial roles (Clinicians 1-3).

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Responses of clinicians receiving support

Overall, the responses of clinicians receiving support from these initiatives were positive. Common themes that emerged were that the local availability of a specialist improved care for individuals with special needs in terms of both access and quality of care. For more complex cases, that were often referred to specialist services in locations where these were available, the additional support improved access to timely care by reducing the likelihood of external referral together with provision of treatment by the visiting specialist.

“The access for our patients to a higher level of care has been greatly enhanced because people can still come to our community clinic. They don't have to go to a specialist clinic, go on a massive waiting list, potentially travel far … They see clinicians who are at a higher level of knowledge and developing those skills.” (Clinician 1)

“I think the main advantage is that our patients don't have to travel into the city and the waiting time is much reduced. A lot of our patients are elderly or they need somebody to take them, accompany them in for visits and so the location is very important. And the waiting time as well. If you were to send them in to the dental hospital there would be a longer waiting time.” (Clinician 5)

In addition, the ability of clinicians to draw on support from the specialist improved their willingness and confidence in managing individuals with special needs. Supports extended from seeking advice, joint consults, and reviewing treatment completed by the specialist. As a result, clinicians often did not necessarily feel the need to refer to the specialist for treatment because it gave them the opportunity to learn from cases managed locally by specialists and felt more supported to manage similar cases in the future.

“Certainly having somebody around to take care of those complex patients is very helpful. And I also learnt reading through their dental records and

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seeing how they manage their patients … and if there's any questions I can email them and get their response.” (Clinician 4)

“Well there was one case where it was quite helpful because I just booked that patient in for a consult with a special needs postgrad. I said I'm not really sure how to proceed. We had a few other medical issues going on and the postgrad was able to give me some guidance… that helped me crystallise my treatment plan to be able to provide that for the patients. So in that one case, the patient was not referred to the dental hospital after I sought some guidance from the special needs postgrad… I think it may help in the future a little bit in that I sort of know how to approach it.” (Clinician 5)

“I found that a lot of the dentists often took up the opportunities to discuss with the special needs dentist and to get recommendations … about how to better manage patients rather than just referring off … it definitely was a more collaborative environment” (Clinician 6)

“Or if the case is particularly more difficult … we can postpone it until he comes in and then he will take on the case himself which has been very useful as well.” (Clinician 7)

The main drawbacks reported largely related to the availability of specialist support. This also differed in nature between the supports provided by the training specialists in Victoria versus the fly-in fly-out specialist in the Northern Territory due to the difference in frequency at which local support was provided for clinicians. In Victoria, where support was available on a weekly basis, the most commonly reported issue was that the lack of availability of specialists resulting in some clinicians deciding to refer patients rather than using the support to attempt management themselves. Clinicians felt that this reflected the unwillingness of some of the other clinicians to treat individuals with special needs or insufficient support or other constraints, such as productivity targets, that influenced their decisions.

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“The good aspect is that I believe my patients are getting the best care they are entitled to … The bad …it makes me very lazy. So I see a person who is specialising and … I tend not to do so much to push myself to read more into it or try to manage those cases. And so usually I get somebody to look after the patient for me.” (Clinician 4)

“I think, most of the time, if there was an issue, to be honest, these patients would be referred to the postgrad themselves. I don't know how much of a learning experience we actually had … it's an easy way for some of the dentists to pass the buck.” (Clinician 5)

“… certain clinicians who would probably just feel more comfortable referring… to the specialist … I suppose it just comes down to, it's a little bit easier… And to put it very bluntly, right now within the public system… when your performance is just showing in your DWAUs (Dentist Weighted Activity Units) and you're told that the clinic may not have enough money to fund the current staffing levels if the DWAU units are not upheld, all of this liaising … doesn't count toward your performance … I'd rather see a special needs patient if I knew it would automatically attract a certain amount of DWAUs. I think it’d take some of the pressure off.” (Clinician 5)

In contrast, specialist support provided to clinicians in the Northern Territory was less regular. The specialist would fly in every few months to see patients with advice provided remotely on an as-need basis. As a consequence, the weaknesses that were identified were largely related to the difficulty of relying on advice to make clinical decisions and the limited opportunity to learn directly from the visiting specialist.

“The trouble is … you are sandwiched between the medical professional and the dental professional. Sometimes the dental professional … may not accept what the medical professionals say. Then it puts me, or clinicians like me, under the light … like any type of audit process.” (Clinician 3)

“I think the main downside is that because (the specialist) only really visits, it's once every so often … I won't be within the same clinic when he’s 316

working because we've only got a one chair clinic … he's a busy person. He can't be here all the time. But when he is here, I wish I could either be working alongside him or, at least, see the way he does things. And so that we can work together a bit more.” (Clinician 7)

The potential to use the specialist as a learning resource and, in particular, the possibility of shadowing the specialist to improve their understanding of how specialists manage such cases, was a promising opportunity raised by many clinicians across all sites. Many felt this was likely to be the key to improving confidence in managing this group of patients into the future. However, a concern was that this support was largely limited by the availability of specialists.

“I'd love for the postgrads to have more scope to provide training … Because when they're here, they're going to be focused on their patients.” (Clinician 1)

“(the specialist) might say he can only come once a month. But the patients we are seeing may be needing something anywhere between these times … Increasing the frequency, that’s one answer.” (Clinician 3)

“To see how they deal with the patients and the different clinical skill sets that might bring. And also how they liaise with the different medicos. I really think there’s no better way until I see how it's done. That might make it a bit easier for me to do it next time and to ask them questions in real time when they're going through a report that the oncologist faxes through.” (Clinician 5)

Despite these limitations, managers felt that the additional support had improved the ability of their clinicians to manage individuals with special needs and that it had been vital in upskilling their local workforce and for improving access to care.

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“the special need postgrads have helped develop their confidence and we're seeing that because one of the things with the overflow of the cancer clinic is, of course, not all the patients can be seen by the postgrads. So there have been a number of clinicians who have started to gain a bit more experience in those cases and as they develop their confidence.” (Clinician 1)

“I think having the special needs dentists there actually gives us the opportunity to discuss these cases … I can see that some clinicians are getting more comfortable and willing just to treat these patients … it's a great benefit for our clinic and could help us to see a few more of these special needs patients.” (Clinician 2)

Responses of specialists providing support

The responses of specialists were generally positive and complemented those of the clinicians they supported. The main strengths of the support provided included improved accountability of the clinicians and improved access to timely care. This was either the results of them providing direct care at the community level or an increased willingness of clinicians to manage patients with special needs stemming from their interactions.

“I think probably the overarching impact I have had is one of quality…maintaining these clinicians’ accountability to providing an appropriateness of healthcare to these clients.” (Specialist 1)

“I was seeing one of the oncology patients in my room and another dentist was seeing a very similar case … I could help the dentist do the treatment plan for their patient … she was able to treat that [case] and said that she felt she may able to see some similar patients as a result … you can give the other dentist a little bit of understanding on how we do things … [and] some of the dentists, not all of them, feel more happy to do what we do now.” (Specialist 2)

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“I think for dentists, there was also an element of the special needs postgrad acting as a role model … they had the opportunity to see, in a sense, how the special needs postgrads managed particular cases … even if it was not by direct observation … And I think in some ways it probably would have also given them the opportunity to see that special needs patients could be managed in the community setting.” (Specialist 3)

The primary concern of specialists was that their limited availability impacted on patient care, and more so for the fly-in fly-out specialist service due to the relative irregularity of the service. This was largely related to their availability to provide or guide patient care. In their responses, specialists were able to provide examples of their reservations about clinicians understanding the needs of individuals with special needs.

“[The clinic] would keep booking and booking patients. And sometimes … They need treatment before they started their oncology treatment. And I use to get them two to three months after they had started their treatment.” (Specialist 2)

“The other issue is in terms of the services is that patients have to wait … the frequency of my travel to the Northern Territory certainly impacts on acute management of clients with special needs or those acute medical things.” (Specialist 1)

“And then also the other thing is with my management of those with disability. If they have an acute dental condition then they are at the mercy of the general dentists. An example of that was a client with Down syndrome … she's got very few permanent teeth and we've been nursing along these deciduous teeth … over like a period of 20-30 years. She came in with an acute infection of one of her upper incisors and the general dentist took out all four and held her down while she was screaming under LA. This is somebody who's non-verbal with a severe intellectual disability. I’ve had to do treatment before and it was completely fine. Whereas, you know, you

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had somebody who didn't have an understanding of the client. I wasn't there to protect her from this dental treatment … So this is a real risk of me not had been having frequent visits.” (Specialist 1)

As a result, specialists felt that the inherent weakness of any support provided was the need for clinicians to recognise the possible limitations of their own knowledge and scope of practice. Their sentiments suggested that clinicians did not have a full appreciation of the complexity of the patients they may be managing.

“I think there's a lot of dentists that whilst they have part of the picture, part of the jigsaw puzzle, they don't have that overarching understanding of special needs management … In terms of special needs management, they're treating one aspect of their medical history and one risk factor without understanding the interplay between comorbidities and the special needs individual.” (Specialist 1)

“The main disadvantage from my point of view is when they see… that we do things easier. The way we do things is difficult but when we do it over and over I know it looks easier even if it is not. So some other people may believe ‘okay, this is so much easier than we thought. We may not need a specialist. We can do it because if they do it in such a way then we can do it’.” (Specialist 2)

Furthermore, specialists raised concerns that clinicians may have been using the support provided inappropriately. Rather than using it to improve their ability to manage individuals with special needs, there were suspicions that the specialist was used to mitigate medicolegal risk in difficult clinical situations or reduce the need to spend additional time with patients because of productivity pressures.

“There are major issues, medicolegal issues … about providing advice for clients that I haven’t examined … where you have a dentist who knows that they are going into a difficult high risk situation who is using me or (another

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specialist) to be able to put down in their notes ‘as per the opinion of this specialist’ … So that’s purely using our names as a risk mitigation.” (Specialist 1)

“In some cases the dentists were more willing to try because they could get the advice that they needed quite easily whereas in other cases, if a patient was going to take more time and impact on productivity and efficiency, I felt that I sometimes referred on for those reasons.” (Specialist 3)

Given these concerns, specialists felt that in order to fully support clinicians to the degree necessary, greater investment into the speciality was required. Their recommendations included appropriate remuneration for specialist support, increased time for specialist involvement, greater clerical support, and investment into facilities and equipment to assist all clinicians. Specialists felt that some of these measures would not only improve the care they could provide to patients but also improve the willingness of other clinicians to manage these individuals or consider specialisation.

“Given that neither of us are actually remunerated or contracted for that added support … It's an organisation not supporting the specialty of special needs dentistry but asking for it at the same time.” (Specialist 1)

“Originally it was funded for eleven weeks a year specialist involvement time to now four … I would go back to having monthly visits and maybe sharing that between two specialists. But it would have to go back to what it was. You couldn't share the portion that I am on at the moment without just over complicating things and creating more issues.” (Specialist 1)

“I would like to have two specialists or two postgrads … we could try and deliver the dental treatment faster instead of delaying the treatment because we can only see the patient say every Monday for two to three months. So, my plan will be to have two to three weeks to finish the treatment but … we need more people working in the clinic.” (Specialist 2)

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“I would say that one thing that would be good to have at that level would probably be more administration support because we were having to do a lot of chasing of medical history information. Having to do our own paperwork.” (Specialist 3)

“It's not always practical but putting in a hoist or some sort of wheelchair lift would certainly help with our patients who had physical disabilities, but it is a large investment. And it may also require modification to the premises which may not be possible.” (Specialist 3)

Furthermore, specialists saw significant value in using training specialists to provide support to clinicians in such initiatives. Reflecting on the placement of training specialists, there were suggestions that this could offer valuable opportunities in other settings and for learning for both training specialists and the clinicians they may be supporting.

“It would be nice to get to use this resource because I guess there's a uniqueness to the Northern Territory and to that group. You've got the whole cultural overlay with the comorbidities. So I think it would be … if we were to have it as a place of training as well” (Specialist 1)

“(The placement) helps develop an appreciation of the challenges faced by general dentists with delivering care at the community level … if they haven't provided treatment in that space before.” (Specialist 3)

Regardless, specialists felt that while there may be some clinicians who would continue to be unwilling to treat individuals with special needs, there was a role for the specialty and employers to encourage and support clinicians in this area, particularly amongst those who do have a desire to assist in improving access to care for these individuals.

“I think most general dentists are frightened of special needs clients, particularly those with complex medical issues, and I think they're more

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than happy for you to hold their hands in terms of guiding them through stuff and having a conversation with them because it's not necessarily just about them presenting a clinical scenario to you and you providing the answer, it's about actually having the conversation. And that's why the relationship between the specialist and the general practitioner is the most important thing in terms of the effort and how effective it is … (but) how effective I am is purely dependent on the relationship I have with the other clinicians … [I’m] far more willing and able to support dentists who I believe are working with me.” (Specialist 1)

“It also depends on the dentist willingness to treat this kind of patient … I've been in places where I can see dentists are happy to treat these patients but at the same time there is a portion of dentists that just basically refuse in a very polite way … one of the main things they need are dentists who can treat patients with special needs. So there shouldn't be any easy way out because this is one of their requirements of being able to work in the public sector.” (Specialist 2)

“On the one hand, potentially the patients would be seeing somebody who has better skills and confidence in managing their case (if there was more specialist involvement). On the other hand, it decreases the opportunity for the general dentist to manage those cases and decreases their confidence because from experience … you just have to deal with those cases. And you know, in that way you gain the experience to manage it routinely yourself. So that's really a double edge sword.” (Specialist 3)

“So, one example I can think of is … at a clinic that I personally haven’t worked at but I know other postgrads worked at. And after, the [postgrad] program … had to be suspended at that site, that particular clinic was able to build on some of the work that had been started …. I spoke to one of the dentists who had been there and they felt that they were more confident about communicating with the hospitals after the postgraduates had left. So I think that’s pretty positive that the program will continue.” (Specialist 3)

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Discussion

Improving the oral health of individuals with disabilities and complex medical issues needs to be considered as a high priority. Unfortunately, because other medical issues have often taken precedence over oral health, preventable dental conditions and oral health are neglected resulting in undue suffering from dental pain (9). Furthermore, when these individuals finally seek dental care, their treatment needs are often greater, more complex, and may be more difficult to manage (5). The resultant delay in receiving this treatment can often result in unnecessary pain and tooth loss, creating a cycle that results in further debilitation and compromised masticatory function, swallowing, speech, and aesthetics (9).

Whilst part of the issue is a need for oral health to be given the same priority as general health, there is also need for concerted efforts from the health care system to ensure all patients are able to receive timely care. In the dental profession, this continues to be a problem with individuals with special needs reporting difficulties locating dentists willing to treat them because of a lack of perceived training, knowledge, and skills (2-4). Likewise, specialist services for those with special needs are primarily within the public dental system and often have long waiting lists due to an ever-increasing demand placed on a small specialist workforce and limited resources to provide these services (5, 10).

Dental services have taken different approaches to trying to address this issue with many providing additional support to their clinicians to try and reduce a reliance on specialist referral. A common theme from discussions with oral health professionals has been a desire to work closely or alongside specialists in special needs dentistry (7). This was the approach taken by the clinics involved in this study. In particular, two community dental clinics in Victoria, Australia (Link Health and Community and 324

Carrington Health) collaborated with the Melbourne Dental School at the University of Melbourne to have training specialists in special needs dentistry work alongside dental teams consisting of general dentists, oral health therapists, and dental prosthetists once a week as a clinical placement. Similarly, the Top End Oral Health Services in the Northern Territory, Australia developed a formal relationship with a specialist in special needs dentistry from interstate to visit Darwin and Alice Springs several times a year to provide additional support to local clinicians. Between these periods, this specialist offered clinicians remote support by providing advice and input on individual cases based on the needs of individual practitioners.

The results of the current study indicated that despite some of the inherent differences between these two initiatives, overall, they had a positive effect on clinicians working at each of the respective sites and improved their willingness to try to manage these patients rather than referring them onwards. A key benefit was that clinicians were able to interact directly with the specialists in whatever manner reflected their own needs. Many participants and specialists discussed seeking advice on cases, observing or learning from specialists with respect to how they managed patients, the ability for joint consultations and treatment planning sessions, opportunities for mentorship and role modelling, and aspects of moral support from the specialists in the possible situation of an adverse event.

A significant opportunity of working alongside specialists or specialist trainees, over other forms of interactions, was the ability for clinicians at the community clinic to see how more-experienced clinicians worked in their local setting. From other initiatives discussed in the literature, a reported limitation has been a sense that specialists may not appreciate the challenges faced by clinicians at the community level because of limitations in local infrastructure, such as clinic design, equipment, and facilities with these commonly identified by oral health professionals as a barrier to treating individuals with special needs (4). However, in this study, and particularly for those in 325

Melbourne clinics working with training specialists, being able to see specialists work with them and with equal constraints allowed the local clinicians to see how they could adapt their own ways of managing patients; something more difficult to achieve through remote support.

In addition, the ability for these visiting specialists to improve access to care was essentially two-fold. Not only did their support improve the willingness of other clinicians to attempt treatment for these patients but having the specialist work locally allowed patients to access specialist level care closer to home. Given that most specialist clinics in Australia are centralised in major cities, this may offer a significant advantage for many patients by reducing the burden of travel often placed on patients, families, and carers as a form of outreach or intermediate level service (2, 10).

Although many of the reflections of the general clinicians were somewhat anticipated, some interesting themes emerged from the views of specialists involved in providing this support. Although their reflections were generally positive and complementary towards many of the clinicians they supported, some discussed their role as one of ensuring quality and accountability. In doing so, they raised concerns about the ability of the clinicians they were supporting to appreciate the true complexity of cases and their management and discussed the need for them to intervene and ensure patients received an appropriate level of care. Previous studies into support provided by specialists in special needs dentistry have raised similar concerns about finding an appropriate balance between encouraging clinicians to attempt treatment when they may not fully appreciate the complexity, ensuring that these vulnerable patients are receiving the standard of care they deserve, and ensuring adequate access to this case (6).

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In addition, specialist services often encounter the problem of being placed under additional pressure because of ‘unnecessary’ referrals or those that are perceived by specialists to lack complexity and could be managed by general dental practitioners (10). The United Kingdom, in particular, has explored the use of case mix models to determine the complexity of patients treated by different clinicians and postulated its use for determining appropriate allocation of referrals to clinicians in specialist services (11, 12). The problem with many such tools is they continue to rely on specialists assessing the complexity of patients wherein the more significant problem lies with clinicians at the community level not being able to fully appreciate the interaction of social and medical factors in these patients. As a result, whilst tools that dentists may be able to use to assess the case complexity of patients with special needs are developed and validated, perhaps initiatives such as visiting specialists, could also be used by specialist services to assist with assessment and triage of patients to determine the most appropriate provider for their care based on their needs.

Herein lies the dilemma faced by special needs dentistry as a specialty in many countries: how best can the needs of these patients be met without compromising the quality of care they receive? The solution is not increasing the reliance on specialist services, given the limited resources dedicated to these services and the limited specialist workforce. Instead, it is about ensuring that the dental workforce, and particularly those in the public dental system, are adequately equipped to manage the needs of this growing population.

The current study provides an example of how both the specialist and training specialist workforce may be used beyond direct patient care to encourage wider access to care. Whilst such initiatives may not necessarily change the perceptions of all clinicians and improve their willingness to manage this group of patients, it will go some way to addressing current deficiencies in training and experience that remain as

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significant barriers to access of care for these programs while training programs address these issues in future generations of oral health professionals.

Unfortunately, what is currently lacking is adequate resourcing which must include appropriate funding and priority dedicated to these patients, use of an integrated team of oral health professionals to manage preventive care for those more vulnerable to risk of oral disease, and ensuring this workforce has not only the adequate training and skills, but also appropriate investment into the specialty to benefit from ongoing support from specialists in this environment. In addition, efforts to improve the oral health awareness amongst other health professionals and carers in the disability and aged care communities is vital to supporting these preventive messages and increasing the priority of oral health in these populations. A limitation of the current study was the inability to provide more in-depth comparison between the weekly support provided by the training specialists and the less regular support provided by the fly-in- fly-out specialist. Inherent differences between the support provided by the two models emerged from the responses of participants and certainly warrants further research of both models to allow health services to determine if such supports may be beneficial to their clinicians and availability of specialists.

Regardless of the issues described above, the results of the current study suggest that having more experienced clinicians, whether they are trainee or qualified specialists, to support other health professionals can have a positive influence and potentially improve the willingness of clinicians to treat individuals with special needs. Furthermore, these initial and promising results warrant further investigation into these and other supports that clinicians feel may improve their confidence, ability, or willingness to treat these patients. Although discussed primarily in the context of special needs dentistry, such models may have implications for other dental specialties in considering how specialists can continue to support oral health professionals, particularly in areas where access to specialists may be more difficult. Nevertheless, 328

these findings reinforce the need for improved training of oral health professionals in the area of special needs dentistry and demonstrate the vital role specialists play in continuing to advocate for and improving access to dental care and better oral health for individuals with special health care needs not just in specialist clinics but also the wider community.

Conclusion

The results of this study indicate that receiving additional specialist support potentially improved the willingness of clinicians to treat patients with special needs. In particular, having opportunities to work alongside each other often offered mutual benefits. From a specialist perspective, the support provided improved the quality of care received by patients at these clinics and ensured a greater level of accountability given the reliance of clinicians to recognise case complexity. In addition, where treatment was beyond the scope of clinicians, patients benefited from increased access to specialists treating them locally. Specialists raised concerns about possible inappropriate use of supports to mitigate medicolegal concerns and productivity pressure but for specialist trainees, it offered a unique opportunity to understand the barriers and challenges faced by clinicians they received referrals from. Likewise, working alongside specialists was positively received by clinicians and resulted in them feeling they were able to provide better access to care as well the opportunity to learn from specialists. Further research and investment is required into such initiatives to support clinicians working in the primary care setting to address existing barriers to accessing regular dental care experienced by individuals with special needs, particularly those related to the perceived lack of training and experience of oral health professionals in this area.

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References

1. Lopez Silva CP, Singh A, Calache H, Derbi HA, Borromeo GL. Association between disability status and dental attendance in Australia-A population-based study. Community Dentistry and Oral Epidemiology. 2021;49(1):33-39. 2. Pradhan A, Slade GD, Spencer AJ. Access to dental care among adults with physical and intellectual disabilities: residence factors. Australian Dental Journal. 2009;54(3):204-11. 3. Derbi HA, Borromeo GL. The perception of Special Needs Dentistry amongst general dentists within Western Australia, Australia. Journal of Gerontology and Geriatric Research. 2016;5(4). 4. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Clinician-perceived barriers to caring for individuals with special needs within the public dental system. (Manuscript submitted for publication. 2021). 5. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. Challenges associated with providing specialist dental care for individuals with special health care needs. (Manuscript submitted for publication. 2021). 6. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. A structured network relationship with specialists improves the willingness of dentists to manage individuals with special needs. (Manuscript submitted for publication. 2021). 7. Lim MAWT, Liberali SA, Calache H, Parashos P, Borromeo GL. The perspectives of the public dental workforce on the dental management of people with special needs. (Manuscript submitted for publication. 2021). 8. Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods. 2017;16(1):1609406917733847. 9. Lim MA, Borromeo GL. Oral health of patients with special needs requiring treatment under general anaesthesia. Journal of Intellectual & Developmental Disability. 2019;44(3):315-20. 10. Lim MAWT, Liberali SA, Borromeo GL. Utilisation of dental services for people with special health care needs in Australia. BMC Oral Health. 2020;20:360. 11. Bateman P, Arnold C, Brown R, Foster L, Greening S, Monaghan N, et al. BDA special care case mix model. British Dental Journal. 2010;208(7):291-6. 12. AlKindi N, Nunn J. The use of the BDA Case Mix Model to assess the need for referral of patients to specialist dental services. British Dental Journal. 2016;220(8):401-6.

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Chapter 6. Discussion

Special needs dentistry remains a relatively new dental specialty having only been formally recognised by the Dental Board of Australia in 2003 (1). However, despite the increased advocacy and recognition of the oral health needs of individuals with disabilities and complex medical and mental health issues that came with the establishment of this specialty, individuals with special needs continue to report difficulties with accessing regular dental care which may, in part, have contributed to the poorer oral health noted in these populations (2-4).

A recurrent theme throughout the Australian literature in relation to these issues of access to care has been the experience and willingness of clinicians to treat patients with special needs. In a recent survey of general dentists in Western Australia, approximately 40% of respondents indicated that they did not treat any patients with special needs (5). Of these dentists, the majority (55.7%) indicated that the primary reason for this decision was a lack of experience in the area, with only one third (33.3%) recalling any training in special needs dentistry during their primary dental qualification (5). These results also largely reflected the reported experiences of patients with special needs. Difficulties with finding clinicians who have the adequate skills and training to manage their needs, or who are willing to treat them, have been reported repeatedly by different patient groups with additional health care needs (4, 6-8).

Despite significant growth of the specialty over the last two decades, there are currently only approximately 20 registered specialists in special needs dentistry practising across Australia (9). Likewise, the number of countries that recognise special needs dentistry, or special care dentistry, as a specialty, and allow clinicians to register as specialists in this field remains limited (10-12). This can create challenges when it comes to the availability and access to services or specialist care for these

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individuals. However, the aim of developing this specialty was never for all individuals with special needs to be treated by specialists alone. Given the growing prevalence of disability, and the increasing complexity of patients in ageing populations with multiple medical comorbidities in Australia and worldwide (13-16), any suggestion that this was possible or achievable was, and remains, unrealistic and inappropriate. Rather the recognition of the specialty, like all other dental specialties, was to highlight the fact that patients may exist with a level of complexity requiring specialist knowledge and skills and the need for a group of specialist clinicians to advocate for these needs and lead education and advocacy in this area. This is reflected in most accepted definitions of special needs dentistry (1).

As a result, the question of ‘what constitutes specialist care in special needs dentistry?’, or ‘what characterises a patient with special needs requiring referral for specialist care?’ emerges. There are limited Australian studies that have attempted to address these questions. A survey of general dentists in Western Australia provided some insight into their perceptions of special needs dentistry (5). The four main categories of patients identified included those with physical disabilities (67.2%), intellectual disabilities (64.1%), complex medical issues (36.7%), and psychiatric issues (30.5%), and this generally reflected their relative referral tendencies with those with intellectual disabilities, psychological problems, and behavioural compliance issues representing the three most commonly referred groups (5). Interestingly, this was in contrast to the results of a review of referrals to the Integrated Special Needs Department at the Royal Dental Hospital of Melbourne which reported that those most likely to be referred were individuals with complex medical issues, representing 81.7% of referrals, and followed by those with psychological conditions (46.0%) and physical impairments (34.2%) (17).

Given the limited research in this area, one of the focuses of the present body of work was to add further data towards the existing knowledge base to develop a profile of 332

the patients requiring specialist care through a cross-sectional audit of two of Australia’s largest and most well-established referral centres: the Integrated Special Needs Department (ISND) at the Royal Dental Hospital of Melbourne (RDHM) and Special Needs Unit (SNU) at the Adelaide Dental Hospital (ADH) (18). Rather than presenting a consistent profile of certain groups of patients that may require this level of care, our results reflected the broad spectrum that comprises special needs with no single subgroup emerging from either specialist unit. This somewhat reflected discussions we had with general dentists who did not report a single group that was universally more difficult to treat for all clinicians (19). In fact, when analysed more closely, there were quite prominent differences between the two units with a much higher proportion of patients treated at the SNU in Adelaide due to their medical complexity and a greater proportion of those treated at the ISND in Melbourne because of disability-related issues, primarily behaviours which may preclude or present difficulties in treating the patient in a conventional dental setting (18).

The comparison of these two specialist units did provide important insights into the potential influence of service models, availability of treatment modalities, and the use of the workforce on referral patterns, patient profiles, treatment provided, and number of appointments. These differences presented an initial picture of specialist services in this country and the types of patients receiving specialist care, but also raised possible concerns about the variations in the profile of patients treated and whether these may reflect issues of patient groups that these services may not be reaching (20).

Likewise, it could also have reflected the evolution of specialist services over time to reflect a greater proportion of patients with special needs being managed at the community level. Given the existence of a wider network in South Australia to support clinicians in the primary care setting to manage patients with special needs, the lower proportion of patients with disabilities at the SNU could have reflected these patients 333

being able to receive care at clinics closer to home. The additional benefit may have been that the SNU thereby was able to prioritise care for those with medical acuity where this may have been less possible with the competing demands of a larger and more varied patient cohort. The concern, however, is that if specialist services narrow their focus to particular patient groups, such as those with complex medical issues in this example, are they adequately equipped in terms of facilities and equipment to manage the small group of individuals with disabilities who may still require specialist care when it is beyond the scope of general practitioners in this community?

The reflection of specialists working within these units was partly that differences between these units and the services they provided largely reflected the historic origins of each unit and a reflection of their local health care systems (20). For example, specialists from Melbourne highlighted the existence of hospital-based dental clinics at several of Victoria’s quaternary and tertiary medical referral centres which may have resulted in a reduced need to manage those with urgent and more complex medical issues (20). As a result, their specialist unit had traditionally been focussed on the care of patients with disabilities, with the unit developing from a need for ongoing care for many individuals with disabilities in their adulthood when it was no longer possible for them to receive paediatric dental care.

Transition from paediatric to adult specialist services in special needs dentistry has been discussed in the Australian and international literature (21-23). Despite limited protocols to guide the specifics of this process, overall, it is accepted that facilitating a transition in the dental care of patients between these services increases the likelihood of continuity of care in early adulthood for individuals with special health care needs (21, 23, 24). There were some differences noted in the proportion of younger adults between the two specialist units. The higher proportion of this group in the Melbourne sample potentially reflected the fact that it is likely much easier to facilitate transition between paediatric dentistry and special needs dentistry departments at the 334

same facility than is the case in Adelaide where paediatric and adult services were at two different sites. This is a finding has led to changes in the Adelaide service to try and improve transition of care but requires further investigation across specialist units given the importance and influence of ongoing dental care in early adulthood on future oral health.

The historical origins alluded to by specialists were most certainly reflected in the nature of services available at the RDHM with both a dedicated Day Surgery Unit and Domiciliary service. The availability of general anaesthesia as a treatment modality for patients with special needs is seen as vital for those who may present with significant treatment needs, or levels of anxiety or behavioural issues that may preclude their treatment in the conventional dental surgery and has been discussed widely in the literature (25-29). Our results reinforced this and demonstrated the significant treatment needs of these individuals and how vital this resource is for managing the needs of this group (30).

Likewise, for those who may not be able to attend conventional dental services, domiciliary care can be an important treatment modality to facilitate access to dental care (31, 32). A comparison between these two specialist units demonstrated the improved access to care to specialist care for the older adults in the Melbourne sample because of the availability of domiciliary care (33). These findings confirmed those discussed in the international literature that despite the potential difficulties associated with providing dental care through domiciliary services, they need to be considered as part of the solution for managing the oral health care of functionally- dependent older adults in countries with ageing populations (34-36).

Whilst services should be reflective of the needs of local populations, there is a greater need for the specialty to ensure that services are able to reach those that require 335

specialist level care. This will be key to the continued growth and development of the specialty and central to achieving the mandate of improving the oral health of these populations. The results of our study suggest that further research is required in this area. One drawback of the current study was the inclusion of only two of the five dedicated specialist units around the country. This was largely due to the lack of interest of other units to be involved in the audit of services. Consequently, a recommendation would be for these services individually, or the specialty collectively, to complete more widespread audits of patient profiles in order to develop a more comprehensive picture of service provision and, more importantly, to identify where particular patient groups may be missing out or how and where those who are not accessing care at such centres are seeking dental care. This also offers opportunities for specialist units to learn from the successes of particular programs and enable them to consider whether such initiatives may be suitable for inclusion amongst their local patient populations.

Regardless of these differences, whether specialist services were reaching all of those who may benefit from or require specialist level care, was a significant concern raised by participants in our study from these two specialist units (20). In particular, specialists at both clinics raised concerns about those who fell outside of the conventional definition of special needs dentistry. An example that was commonly provided in our discussions were the needs of the homeless population, many of whom often presented with a complex mix of medical, mental health, and social issues. Specialists discussed that the interaction of risk factors in patients such as these could often be obscured by the complexity of their social circumstances and that an understanding of the interplay between them can often be vital to addressing their oral health needs.

In the Australian context, social circumstances do not form part of recognised definitions of special need dentistry, despite this being the case in other countries such 336

as the United Kingdom (37, 38). Whether these, or other vulnerable groups should be considered under an evolving definition of special needs dentistry is perhaps one that needs to be considered given the concerns raised by specialists, but care must also be given to expanding this definition and how this would impact on the already diverse population of patients and sometimes stretched specialist services.

In part, the lack of inclusion of such groups in the Australian context of special needs dentistry reflects the nature of Australia’s public dental system and the fact that it is largely focused on managing the needs of the socioeconomically-disadvantaged (39). This is in contrast to universal health care provided in countries like the United Kingdom (40, 41) where there may be the need to ensure that more marginalised populations are not excluded from care because of financial reasons, but primarily because of social circumstances.

Whilst disability and chronic disease may be more prevalent amongst those from lower socioeconomic backgrounds (14, 42), such generalisations do not account for the fact that disability and disease do not necessarily distinguish those afflicted by their socioeconomic status. This was a further concern that emerged from the results of our study, with participants raising concern about access to care for those who may not meet financial eligibility criteria for public dental care (20) but may not be able to access or afford specialist oral health care in the private sector.

Access to specialist care in special needs dentistry in the private sector in Australia is limited with most clinicians working within the public dental system (9). Likewise, most specialists work in major population centres where specialist facilities tend to be located raising concerns about those living in rural and regional areas (20). Although the oral health and access to dental care of individuals living in more remote areas of Australia have been discussed in Australian population health surveys (43), issues 337

pertaining to individuals with special needs in these areas have not previously been examined.

Unfortunately, meeting the health care needs of those living further from the major metropolitan population centres where specialist centres are located remains an ongoing issue and was reflected in the demographics of patients reviewed in our study (18). Whether there are individuals in regional and remote areas that require specialist care and how they can access it must be considered within the scope of specialist services. A key group that will need to be addressed in the context of these specialist services will be Australia’s indigenous populations. These populations, in addition to having higher levels of chronic disease and mortality, have also been identified to experience poorer access to essential health services (43-45). Given the complex interaction between the cultural and health needs of these peoples (46, 47), it is likely they would benefit from specialised dental services provided either by special needs dentistry or dedicated Aboriginal health services.

Likewise, the issue of where and how individuals with special needs seek dental care in the private sector, if they either chose to do so or due to being ineligible for public dental care, remains a largely unanswered question in the Australian context. Given issues related to adequacy of resourcing, such as access to general anaesthetic facilities, in the public sector, do these same issues impact on care in the private sector? Both issues require further consideration and research into the future. In addition, it reinforces the importance of improved education and training of all oral health professionals to be able to recognise and manage the needs of individuals with special needs regardless of whether they chose to work in the public or private sector.

Unfortunately, the lack of willingness and capability of oral health professionals to treat patients with special needs was a major concern of specialists and other staff 338

working at specialist units. This was largely due to the increased pressure that ‘unnecessary’ referrals placed on specialist services (20).

Given the experience of these specialists, it was important to reflect on why they felt such referrals may be unwarranted or unnecessary. Based on our discussions, the opinions of specialists were that a proportion of patients for whom they provided ongoing care at specialist services were individuals whose health profiles or treatment needs were not particularly ‘complex’ (20, 48). In other words, they believed that the management of these patients was within the scope of practice of general dental practitioners. Likewise, given the concerns about the adequacy of the training and experience of oral professionals in this area, it may be possible that there are differences between what specialists and general dental practitioners perceive their scope of practice to be when it comes to patient complexity in special needs dentistry.

Although this study aimed to develop of profile of the patients requiring specialist care, even a mixed methods approach did not allow us to formulate a clear picture of this. From our clinical audit there were no clear or consistent groups that emerged from the comparison of both the specialist units in terms of reason for referral, medical status, or nature of disability (18). This may, in part, reflect the fact that no single group was identified by general dental practitioners when they were asked about individuals they had difficulty treating (19). Furthermore, it is possible that our methodology was not able to stratify the complexity of patients where interaction existed between their medical complexity, physical and/or cognitive impairments, mental health status and anxiety, and treatment needs. However, it is this complexity that appears to be central to difficulties with managing patients with special needs and the necessity for this specialty.

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Perhaps the more pertinent question when it comes to considering the management of patients with special needs is: ‘can the complexity of individuals with special health care needs be assessed or quantified objectively?’. Most certainly the ability to do so would be useful on several fronts. Firstly, if such a tool were available and able to be used by clinicians with limited or no special needs experience, could this assist them in assessing patients and getting a clearer appreciation of their needs? Given that the perceived lack of experience and training of clinicians is a significant barrier to clinicians treating this group of patients (4, 5, 19, 49), such a tool may guide them through this process and provide them with greater confidence in their decision making or recognition of aspects they may not have otherwise identified. A significant concern of specialists that emerged from our study was the ability of oral health professionals to recognise multiple complexities and how these interact in the context of managing patients with special needs (20, 48, 50).

Also, could such a tool be used to determine if an individual required specialist care? Currently referrals for special needs dentistry specialty services in the public dental system are largely determined by the assessment and scope of practice of the referring clinician. Could a complexity tool allow for a threshold to be set at which individuals would be eligible for specialist care? There have been examples of such tools used in other settings, largely to reflect the complexity of case loads at specialist services in the United Kingdom, but have not been used for the suggested purpose nor validated for use by general clinicians without further training (51, 52). Whilst a comprehensive discussion of the advantages and disadvantages of such a triage system, and what it would entail, are beyond the scope of this discussion, it is most certainly an area that requires further consideration and research in the future.

In addition, a complexity tool could offer opportunities for appropriate funding allocation based on the complexity of individuals providing it was developed in consultation with key stakeholders including specialists at the forefront of managing 340

such patients. A key concern that was raised in both the specialist and primary care settings in our study was resourcing in relation to infrastructure, adequate access to certain treatment modalities, and waiting lists (19, 20, 49). Much of this has been attributed to current funding models within the public dental system to such a point where productivity pressures and the inability to meet targets were reported as a possible barrier to clinicians being willing to treat patients with special needs (19, 49).

Unfortunately, despite funding being a concern emerging from discussions with participants in this study, the limited information available that details funding allocation for specialist level services for special needs dentistry prevented further investigation at this time. Public dental services in Australia are a complex arrangement between various levels of government with the services themselves provided by state and territory governments but funded by the Commonwealth under the National Partnership on Public Dental Services for Adults agreement (53). Under this agreement, funding is primarily determined by patient numbers and Dental Weighted Activity Units (DWAUs); which reflect the number of services provided to patients based on the Australian Dental Association Inc. (ADA) schedule of item numbers for dental treatments (53, 54).

Of concern is that the current performance indicators for funding in both the private and public sectors do not provide for additional complexity in treatment provision, other than the nature of the dental procedure itself. The apparent lack of adjustment or weighting for patient complexity which includes the additional time often required to facilitate even simple dental treatment for patients with special needs, particular those with complex behaviours, suggests that the provision of oral health care for this patient cohort may be financially unviable. Given the significant implications of this potentially continuing to impact on the willingness of clinicians, specialists and generalists alike, in both the public and private sector, to care for individuals with special needs, this is an area requiring further research, particularly given that such 341

funding models (e.g. Relative Value Guide (RVG) For Anaesthesia) already exist in the medical profession and are included under the Medicare Benefits Scheme (55).

Regardless of these resourcing issues, the primary problem facing current specialist services is one essentially of supply and demand; that there is an inadequate workforce or insufficient resources within specialist services to be able to manage current referrals and patient caseloads. Conventional wisdom would suggest any potential solution needs to be able to address barriers to increasing access and availability of specialist services while ensuring appropriate referrals for specialist care. However, the former is currently limited by the size of the specialty.

In order to address increasing referral numbers, the main issue appears to be the apparent lack of willingness of clinicians to treat patients with special needs (20). However, that all oral health professionals are unwilling to manage patients with special needs is, of course, a generalisation, and whilst it may have been reflected in the sentiments of many specialists on the current study, this has not necessarily been reflected in the literature. Irregular dental attendance in this population has been reported (2), and the lack of willingness or suitable training and expertise of oral health professionals have been identified as barriers for patients with a variety of additional health care needs as well as amongst dentists themselves (4-8). However, based on a survey of dentists in Western Australia, 29.1% of dentists have no interest or desire to treat these patients whatsoever (5). This also reflected earlier unpublished data from dentists working in Victoria, Australia (56).

Within this study we have provided examples of general dentists managing patients with special needs and being an important asset in the workforce to address the oral health care needs of this vulnerable population. Workforce composition of the specialist units in Melbourne and Adelaide demonstrated not only the relative reliance 342

on general dentists, with these clinicians making up 50% and 40% respectively of the workforce in these units, but also the importance of these clinicians, together with auxiliary oral health professionals, including oral health therapists, dental hygienists, and prosthetists, in sustaining and building the workforce capacity needed to managing patients with special needs, both now and into the future (18).

In addition, the results of our cross-sectional audit of the Special Care Dental Units in Tasmania, which are only staffed by general dentists, demonstrated the willingness and ability of dentists to provide care to individuals with special needs even in the absence of specialists (57, 58). To a large extent, the health profile of patients who received care at these hospital-based dental clinics was very similar to those provided by the Special Needs Unit in Adelaide and consistent with other specialist hospital clinics in other parts of the world (59).

The profile of patients treated at the Special Care Dental Units in Tasmania also offers some potential insights into the nature of patients with complex medical backgrounds about whom dentists have concerns with treating, particularly given they are referring to generalist colleagues working in the supportive environment of a hospital rather than specialists. Common patient groups were those with cardiac conditions (35.4%) often requiring urgent dental treatment prior to surgical interventions, or taking medications which may increase bleeding risk, or a combination of both, cancer diagnoses, often requiring assessments prior to oncologic treatments, and those taking anti-resorptive medications for bone protection, osteoporosis, or bone malignancies (57, 58). Such complex case-mix scenarios are not unique to Australia (59-61), however, what is evident is that there was clear evidence of inconsistencies in service delivery models within the public dental system.

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General dentists managing these patient groups suggested that when it came to patients with complex medical issues, the concerns of clinicians largely related to an understanding of how medical interventions and medications may impact on the safety of providing certain dental procedures (49). Other patient groups that were discussed by clinicians as presenting difficulties included those with disabilities, the elderly, and anxious patients (19). This is perhaps not a surprising outcome as complexity in managing these patient cohorts was exactly what led the initial drive to develop the specialty of special needs dentistry within Australia. However, as previously highlighted, what was never intended or expected was the degree to which a reliance would increasingly be placed on such small specialist numbers. Hopefully with time, the number of specialists in special needs dentistry will grow, however, whether there will be sufficient numbers and distribution of specialists to ever meet the expectations of both the oral health sector and patients alike is probably unlikely.

Addressing this scenario leaves one to ponder what drives referral practices and whether unwillingness to even attempt management of complex patients is acceptable amongst general oral health providers. Although the responses of clinicians working in the primary care setting did confirm some of the suspicions of specialists and what has been reported in the literature, that there are likely to be a small group of clinicians who have no desire or interest to treat patients with special needs and will always refer rather than attempt treatment (19), on the whole, a significant barrier was their perceived lack of training and experience in managing patients with special needs. This barrier was further compounded by difficulties experienced in obtaining further necessary health and social information about their patients, either from family, carers, or other health professionals, which may have made them more uncomfortable about the safety of providing care. As a result, these clinicians were often placed in situations where they were concerned about the risk of adverse events, harming the patients, and potential medicolegal ramifications of working beyond their comfort zone and/or scope of practice.

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However, when reflecting on clinicians working in the Tasmanian setting, the question remains as to what was different about that environment that allowed these dentists to be willing to agree to be involved in the provision of oral health care for these potentially more complex and challenging patients? The most likely answer is that working within the hospital environment provided one of additional support that was sufficient for these clinicians to make them feel able to provide this care. The current study highlighted this novel finding that the lack of confidence in the ability of clinicians was often further compounded by a sense of ‘lack of support’ within their work environments. Clinicians reported experiencing barriers related to providing patients with the level of care that they needed, sometimes to the level of being as trivial as not being allowed to have additional time during appointments to account for the additional health care needs of the patient within the community dental setting.

However, in addition, clinicians did also allude to issues relating to resourcing and infrastructure of their clinics which may have been different from those experienced by clinicians working in the specialised environment fostered in the Tasmanian setting. In particular, clinicians raised concerns about adequacy of infrastructure, especially for those in wheelchairs, access to facilities, equipment, and treatment modalities such as general anaesthesia and relative analgesia, long waiting lists, and the inability to provide ongoing and preventive care. Furthermore, as discussed previously, a key and emerging concern was productivity pressures placed on clinicians and how these may be related to funding and the financial viability of treating patients with special needs. Such issues are not uncommon with similar factors discussed in the limited international research in this area (62-64).

The experience of clinicians in relation to this in the most part was a feeling of ‘fighting an uphill battle’ with patients with special needs in a vicious cycle that was difficult to break. As there was little to no priority afforded to the care of those with special needs, they often languished on long-waiting lists. This was despite the well-accepted 345

notion that these individuals were likely to be at higher risk of dental disease. Unfortunately, due to the lack of awareness amongst carers and other health professionals about oral health, those unable to advocate for themselves often may be waiting with pre-existing disease, sometimes suffering in pain, and with these problems slowly worsening. By the time they are eligible or accepted for their dental care, their problems are often so severe that clinicians may feel they are beyond their capabilities, particularly where pain and unfamiliarity with the clinician or dental setting may exacerbate anxiety and behavioural issues. Furthermore, once these problems have been addressed, there are no allowances to be able to implement preventive and ongoing care to try and prevent this cycle from recurring. It is not entirely unexpected that when faced with this confronting situation that clinicians would be daunted and decide to refer in the hope that a specialist will be able to retrieve the oral health of these individuals. The problem is that the path to specialist care is often marked by similar obstacles due to the limited specialist workforce and then compounded by resourcing issues described by specialists in this study (20).

The picture of our public dental services in Australia and the manner in which individuals with special needs appear to navigate them is dire. However, what makes the situation more concerning is the impact of these barriers and how they may have influenced culture, and potentially fostered indifference towards understanding and appreciating the needs of the vulnerable individuals. One example is in relation to an aversion to attempt to understand or appreciate the additional health care needs of these individuals. In the current study, both specialists and clinicians identified the ‘impersonality’ of the health service and a reluctance of those triaging patients to ask questions to try and understand or accommodate the needs of patients. Such simple adjustments may have included ensuring a patient in a wheelchair was allocated to a surgery that may enable the clinician better physical access to treat them; or flagging the patient with a hearing impairment so that they are not required to endure a staff member attempting to communicate with them by shouting over the noise of a crowded waiting room. The concern is that in a world trying to be more inclusive to 346

the needs of all (65-67), cultural change and awareness may be lagging within our dental services, even despite the emergence and recognition of a dental specialty that focusses on the importance of appreciating how these factors can impact on oral health and access to dental care. The alternative is that these members of the healthcare workforce are purely acting based on policies that would reflect a much more concerning indictment of the inclusivity of our public dental services.

The promise, however, lies in the significant opportunities to accept, address, and work towards overcoming these challenges, many of which participants in this study have been forthcoming to offer (19). In a similar manner to the necessity for the specialty of special needs dentistry to mature and grow, so do the systems responsible for our dental care of our populations, with these needs largely reflecting the more complex patient being the majority, rather than the exception to the rule.

Certainly, with concerns about issues ingrained within the system, one such recommendation would be the need for health systems to reflect on how they may be creating inadvertent barriers to facilitating the dental care for all population groups, least of which are individuals with special needs. Most investigations of this nature traditionally focus on barriers experienced by the patient in accessing dental care (68- 70). Given the diversity of individuals with special needs, this is certainly an area that requires further research with particular interest in the many factors highlighted by specialists and clinicians in this study.

In addition, this study has also highlighted the need for oral health care organisations to reflect on the experiences and capacity of their workforce. With willingness to treat individuals with special needs reported as a prominent concern, ensuring that clinicians feel adequately supported and have the resources necessary to be able to feel they can provide patients with the care that they need, appears to be central to 347

addressing the willingness of clinicians to treat patients with special needs and thereby to begin to resolve issues with relation to access of care.

The other key aspect proposed by our findings is the need to identify ways in which the perceived lack of experience and training of clinicians may be overcome. The experience of current clinicians supports the need for ongoing advocacy to ensure and improve training in special needs dentistry for all future oral health professionals to better equip the whole dental workforce in the management of patients with special needs given the growing complexity of patient cohorts in an ageing population.

In addition, given the relative lack of training in special needs dentistry of clinicians trained overseas, who were about one third of our sample and are estimated to represent one of every four oral health professionals practising in Australia, another consideration should be the inclusion of special needs dentistry into the examinations for overseas-trained oral health professionals. Special needs dentistry is currently the only dental specialty that is not an examinable competency in the Australian Dental Council examinations, either directly or indirectly, resulting in potentially future registered oral health clinicians with a lack of training in this area (71). An appreciation of the more complex needs of these individuals and their oral health risk status, as well as ensuring that the expectations of the wider Australian community are that individuals with special health care needs should have equal access to dental care are at least basic principles that should be reinforced within these examinations of overseas-trained oral health professionals hoping to work in Australia.

However, although better training will go some way to addressing this issue in future generations of oral health professionals (72), it does little to provide support to clinicians currently in the workforce. A key opportunity identified in this area by clinicians treating individuals with special needs was the desire to have greater 348

interaction with clinicians with greater experience in managing these individuals, in particular, specialists in special needs dentistry (19, 48, 50). The results of this study demonstrated the positive response of clinicians to initiatives developed by specialists to support clinicians in the community with clinicians reporting increased confidence and willingness to treat these patients, with a reduced tendency to refer (48, 50). In addition, there were complementary benefits of such initiatives including increased accountability of clinicians when providing care to individuals, more timely and better quality care either as a result of more able clinicians or direct care provided by specialists at the community level, and the ability to foster a change in the culture at these clinics to promote the expectation that clinicians attempt to facilitate dental care and thereby improve access to care closer to home for many patients (48, 50).

Although our study provided some initial feedback from clinicians in relation to the potential strengths and weaknesses of different initiatives, the aim was not to find one successful initiative to recommend or evaluate support programs in that manner. Instead, our results offer an opportunity for a pathway forward. These findings have demonstrated that different settings and jurisdictions may have different needs and demands, and it is unlikely that just one approach will be suitable. Rather, our results allow dental clinics and health services to look at the needs of their clinicians and thereby adapt the manner of support provided to them as required and depending on this, may change over time. In particular, the initiatives examined offer a range of supports that involve different degrees of investments and resources thereby allowing dental services the opportunity to consider the needs of their patients and workforces, and make the choice to invest in any measure which exists on a continuum of support ranging from further training to upskill clinicians to employing a specialist to work locally.

Continuing to evaluate the success of the support programs discussed here remains vital. The current study provided initial insights following the introduction of varying 349

initiatives across isolated settings. Further developing a growing weight of evidence regarding the supports mentioned above will assist other dental services, locally and internationally, to consider how they may best address the needs of their workforces and communities. Not all initiatives will be relevant in all settings, but a strength of this research has highlighted a number of potential initiatives that may be adapted to the resources and needs of different settings, regardless of local specialist numbers and resources.

The supports examined in this study are not exhaustive with several other opportunities identified by participants. For example, although initiatives such as telehealth have been examined in other settings (73-75), teledentistry has yet to be implemented and tested to support clinicians providing care of patients with special needs. The COVID-19 pandemic has, however, highlighted the potential benefits and need to explore opportunities associated with telehealth in our health systems (76-78). Further research into such initiatives, and how they influence the perspectives of clinicians are integral to the potential for technology as a vital tool in bridging the gaps created particularly by distance. Such technologies have promising implications for the management of patients beyond the special needs population, for both other dental and medical specialties.

Given the limited specialist workforce in special needs dentistry and the potential for a growing need for support from specialists, an important question regarding the role of the specialist in special needs dentistry in the Australian context is raised. In particular, given the specialist workforce is unlikely to grow significantly, is the contribution of specialists more pertinent at the clinical coalface of specialist services treating patients, or offering support to clinicians in the community setting in an attempt to improve access to care at that level; or more widely to increase the oral health literacy among non-oral health professionals providing care to individuals with

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special needs, thereby addressing prevention of oral diseases in this population through a broader approach?

The answer is likely a combination of both as was evident from our study. In an ideal situation, considering a limited specialist workforce and appreciating the finite resources within the public dental system, specialist dental services would be reserved for the most complex cases. In doing so, individuals requiring this care are likely to receive it in a more timely manner. However, for this to be achieved requires a significant readjustment of current workflow with more patients with special needs being treated in primary care settings. For this to occur, our results suggest that there needs to be an upskilling of, and further support provided to clinicians, with specialists likely to provide a vital role in achieving this.

Specialists already play an important role in education and ongoing professional development with many being experts and leading educators in tertiary institutions training oral health professionals in the area of special needs dentistry around the country and internationally (79). The potential problem lies in that specialists are primarily employed by health systems as clinicians, where funding, as described previously, is largely activity-based. Should there be a shift to specialists playing a greater support role for other clinicians? Such an approach may take them away from their clinical duties. How would public health care services address this given the already stretched and limited resources in this area? How would those patients that do require primarily specialist level care be impacted by such strategies?

It is likely that the answer to these questions lies in the implementation of much more substantial changes to the public dental system within Australia to reflect more contemporary expectations and practices of preventive dentistry; a detailed discussion of which is largely beyond the scope of the current research. Fundamentally, current 351

activity-based funding, in addition to not reflecting patient complexity due to special needs, also financially rewards surgical intervention over oral health education and prevention. But it also the more complex treatments that eventuate from a lack of early intervention, such as fillings, extractions, root canal treatments, in our special needs populations that are a significant burden on our system. These are often challenging treatments for patients with disabilities and compliance issues, necessitating specialist care and the use of treatment modalities such as sedation and general anaesthesia. These can place more strain on the resources of a stretched public health care system.

Prevention and early interventions avoid these issues by addressing the risk factors that cause these problems and ensuring oral disease is managed in its early stages. These procedures are more likely to be within the capability of general dental practitioners and oral health auxiliaries. This is not easier, by and large, because it relies on the reinforcement of preventive strategies and ongoing early intervention and care, particularly given that patients with special needs often present with many potential risk factors. In the long run, however, it does promote better oral health in these individuals which may have significant flow on effects to the rest of their general health. In addition, clinicians may be more willing to provide such care given it is more in line with their perspectives of the nature of care these individuals should be able to receive and should sit comfortably within their scope of practice. The impetus for, and fate of, such significant changes, however, would require strong advocacy from the dental profession to influence the hands and minds of senior administrators within public dental services and those responsible for funding, and will require courage to instigate such a significant upheaval of public dental services in this country. Regardless, the issues of prevention and oral health for individuals with special needs do not solely lie with oral health professionals. Whilst they play a significant role towards solving this issue, much wider support is required from other health professionals and stakeholders.

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A key challenge that emerged from discussions with participants of this study was the need for closer collaboration and easier communication with those in the medical field, carers, and others in the wider disability and aged care sectors. The dental profession itself can only build part of the bridge to span this current divide. The perceived lack of knowledge of oral health clinicians and their difficulty in obtaining information and advice about their patients from these non-oral health providers was seen as a barrier in the current situation. Unfortunately, this situation is likely to be complicated by the lack of understanding and knowledge of oral health and dental treatment in other areas of the medical and disability sectors (80-82).

As a result, there are significant opportunities for improved education in oral health for health professionals and carers across all sectors. If not to improve the ability for health professionals to support each other, then to harness opportunities for addressing prevention through a common risk factor approach. Unfortunately, oral health has never held a significant position of priority and has often languished somewhere in the background, in part because other health professionals have seen oral health and dental care as something they have been unfamiliar with and unwilling to discuss (83). As a result, dental care has often not been afforded the same degree of attention in the multitude of health concerns for individuals with special needs because of this lack of advocacy and the traditional separation of medical and dental services in the Australian setting. However, with the growing weight of evidence demonstrating the interactions between oral and general health, and the growth and recognition of the specialty of special needs dentistry, there lies the prospect of no longer having to ‘accept and get on with it’, but a chance to make a difference for patients in this vulnerable population and for these messages to permeate through the wider population.

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This research has provided an opportunity for special needs dentistry to reflect on where this specialty has come from and where its future may lie in the context of the Australian public dental system. One of the significant strengths of this research is that it has used mixed methods to establish a picture of the current state of access to care in special needs dentistry in Australia. The use of qualitative methodology has complemented the quantitative results by offering deeper insights into the experiences of individual clinicians. This has more detailed information to explain the complex issues faced by clinicians working with these patients in an area not previously been investigated in the Australian context.

There have also been shortcomings, many of which have been discussed previously. These include the clinical audit involving only to two of the five specialist referral centres in Australia, and limited participation numbers involved in the semi-structured interviews and focus groups which may limit the generalisation of findings. To an extent, within the quantitative component of this study, this may have influenced the profile developed of those being treated in specialist units and has prevented further comparisons across the different settings. In addition, given the nature of recruitment for the qualitative components, there may have been unintentional bias created by the sample of those more willing to participate and discuss their views.

These shortcomings offer learnings and opportunities to direct and guide research into the future. In terms of continuing to assess the profile of patients referred for specialist care, our methodology provides a framework for future research into referrals and access to care for patients with special needs in Australia and internationally. As has been discussed, this is vital to ensuring that those requiring specialist care are able to receive it and offer opportunities to discern if certain populations may be experiencing barriers to accessing this care and what those barriers may be.

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Likewise, from the qualitative components of our study, there are opportunities to expand on our initial findings. In particular, further validation of the results from our discussions with oral health professionals about the barriers experienced in providing treatment to patients with special needs should be pursued. The emerging themes from our initial findings can provide the basis for quantitative surveys of clinicians across the public dental system particularly in settings where access to specialist care is limited in order to produce further evidence to support the need to address these concerns and promote better access to care for patients with special needs. In addition, where initiatives to support clinicians are implemented, research into the how these initiatives influence the willingness of clinicians to treat patients with special needs, and referral patterns are crucial to establishing data to support other services to make evidence-based decisions in relation to the manner in which they choose to support their own workforce.

The findings of this research also raise new questions which will need to be addressed for the speciality to grow and for the needs of patients to be met. In particular, the development and incorporation of case complexity tools that may be used in a variety of contexts as well as investigating the nature of care available to patients with special needs in the private sector and rural and regional areas.

Furthermore, there is a need to evaluate the current training of oral health professionals, both those trained in Australia and overseas, to determine if tertiary education programs are adequately equipping our oral health professionals for the needs of our community. Likewise, given the limited specialist workforce, and concerns raised by clinicians who may have an interest in this area about their willingness to express this, there is a need for the specialty to consider how best the

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important contribution of clinicians with an interest in special needs can be fostered and whether further support in this area provides an avenue to facilitate specialisation.

This study has provided the specialty of special needs dentistry an opportunity for reflection on the journey travelled thus far, and now, to consider which path it takes moving forward. The results show that although special needs dentistry remains a relatively young specialty it has come a long way to develop the foundations for key referral services to meet the needs of those with special needs in the wider community. It has, however, also demonstrated that there still remains a long way to go when it comes to ensuring individuals with special needs receive equitable access to timely and quality dental care.

There are challenges that need to be acknowledged: the limited specialist workforce and limited resources within the public sector; but also significant opportunities, particularly with regards to utilising existing infrastructure and workforce within the wider public dental system and the expertise and experience of specialists in this field. In particular, despite the reported lack of willingness of clinicians to treat patients with special needs, or the perceived lack of training and skills to do so, the results of this study demonstrate that clinicians may be more willing to provide dental care to patients with special needs when they are supported to do so by specialists, and the organisation in which they are employed, notwithstanding other barriers within their working environment which need to be considered and addressed. Overall, given the growing complexity of patients treated within the public dental system in Australia, as well as in many other parts of the world, these findings reinforce the vital role of the speciality of special needs dentistry and, in particular, specialists in this discipline in ensuring that the dental profession, and the wider health and disability fields, fulfil their obligations to not just meet the oral health needs, but to also improve the oral health of individuals with special needs.

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al's%20Report,- Related%20Pages&text=The%20major%20message%20of%20the,and%20design %20of%20community%20programs.

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Appendix A. Human research ethics committee approval documents

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Appendix B. Data collection form for clinical audit of dental services

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Data Collection Form Version 2.0 (Date: 7 December 2015)

Location: 1 Royal Dental Hospital Melbourne 1 Integrated Special Needs Department 2 Domiciliary Service 3 Day Surgery Unit 2 South Australian Dental Service 1 Special Needs Unit, Adelaide Dental Hospital 2 Highgate Park 3 Modbury GP Plus 4 Queen Elizabeth Hospital 3 Oral Health Services Tasmania 1 Royal Hobart Hospital 2 North-West Regional Hospital

Part A: Patient details

A1 Patient study ID:

A2 Gender: 1 Male 2 Female

A3 Date of birth:

A4 Suburb/Postcode:

A5 Health care eligibility 0 None 1 Health Care Card 2 Pensioner Concession Card 3 DVA Card 4 Other:

A6 Consent 1 Self-consent 2 Family member 3 Other medical power of attorney 4 Section 42K 5 Other:

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Part B: Referral/Appointment

B1 Reason for referral: 1 Second opinion 1 Behaviour/intellectual disability 2 Psychological issues 3 Physical disability 4 Medically-compromised 5 Medication/treatment related 6 Other 2 Further management 1 Behaviour/intellectual disability 2 Psychological issues 3 Physical disability 4 Medically-compromised 5 Medication/treatment related 6 Domiciliary 7 Other

B2 Source of referral 1 1 General medical practitioner 2 Medical specialist 2 1 General dentist 2 Dental specialist 3 Post-graduate student 4 OHT 3 Allied health care worker 4 Residential facility 5 Parent/carer 6 Self 7 Other

B3 Appointment:

Date of original referral:

Date of first appointment:

Date of Appointment:

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Reason for Appointment/Treatment: 1 Examination/review 2 Treatment 1 Periodontics 2 Restorative 3 Endodontics 4 Oral surgery 5 Other 3 Treatment under GA 4 Failed to attend

Treating practitioner: 1 SND Specialist 2 SND Specialist-in-Training 3 Dentist 4 Hygienist 5 Prosthetist 6 Student 7 Other specialist 8 Other

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Part C: Medical status

C1 Medical history 1 Infectious and parasitic disease 1 Viral Hepatitis 2 HIV 3 Other 2 Neoplasms 01 Oropharyngeal cancer 02 Other head and neck cancer 03 Lung cancer 04 Breast cancer 05 Bowel cancer 06 Prostate cancer 07 Skin cancer 08 Lymphoma 09 Leukaemia 10 Other 3 Diseases of blood/blood forming organs 1 Coagulation defects 2 Purpura 3 Other 4 Endocrine and nutritional diseases 1 Type 1 Diabetes mellitus 2 Type 2 Diabetes mellitus 3 Cystic fibrosis 4 Other 5 Mental and behavioural disorders 1 Psychoactive drug use 2 Schizophrenia 3 Mood affective disorders 4 Phobia and anxiety disorders 5 Behavioural disorders 6 Intellectual disorders 7 Other 6 Diseases of nervous system 01 Huntington disease 02 Motor neurone disease 03 Parkinson’s disease 04 Dementia 05 Multiple sclerosis 06 Epilepsy 07 Migraine 08 Sleep disorder 384

09 Neuralgia 10 Cerebral palsy 11 Other 7 Diseases of eye and adnexa 1 Visual impairment 2 Other 8 Diseases of ear and mastoid process 1 Hearing impairment 2 Other 9 Diseases of circulatory system 1 Rheumatic heart disease 2 Hypertensive disease 3 Ischaemic heart disease 4 Heart valve disorders 5 Cerebrovascular disease 6 Other 10 Diseases of respiratory system 1 Asthma 2 COPD 3 Other 11 Diseases of digestive system 1 GORD 2 Liver disease 3 Other 12 Diseases of skin and subcutaneous tissue 13 Diseases of musculoskeletal system and connective tissue 1 Arthritis 2 Osteoporosis 3 Other 14 Diseases of genitourinary system 1 Kidney disease 2 Other 15 Pregnancy/childbirth 16 Other

C2 Type of medication:

A Alimentary tract and metabolism 01 Stomatological preparations eg. topical corticosteroids 02 B Drugs for peptic ulcers, GORD BA H2 receptor antagonists BC Proton pump inhibitors 03 Functional gastrointestinal disorders 385

04 Antiemetics and antinauseants 06 Constipation 10 A Insulin and analogues B Blood glucose lowering drugs X Other drugs used for diabetes 11 Vitamins 12 Mineral supplements B Blood and blood forming organs 01 Antithrombotic agents AA Vitamin K antagonists eg. warfarin AB Heparin 02 Antihaemorrhagics 03 Antianaemic preparations eg. Fe, Vitamin B12, folic acid C 01 Cardiac therapy 02 Antihypertensives 03 Diuretics 07 Beta blocking agents 08 Calcium channel blockers 09 Agents acting on renin-angiotensin system 10 Lipid modifying agents D Dermatologicals G Genitourinary system and sex hormones H Systemic hormonal preparations 02 Corticosteroids for systemic use 03 Thyroid therapy J Antiinfectives for systemic use 01 Antibacterials for systemic use A Tetracyclines B Amphenicols C Beta-lactam antibacterials, penicillins D Other beta-lactam antibacterials E Sulfonamides and trimethoprim F Macrolides, lincosamides and streptogramins G Aminoglycoside antibacterials M Quinolone antibacterials R Combinations of antibacterials X Other bacterials 02 Antimycotics for systemic use 04 Antimycobacterials 05 Antivirals for systemic use L Antineoplastic and immunomodulating agents 01 XC Monoclonal antibodies 03 Immunostimulants AB Interferons 386

AC Interleukins 04 Immunosuppressants M Musculoskeletal system 01 Antiinflammatory and antirheumatic products 03 Muscle relaxants 04 Antigout preparations 05 B Drugs affecting bone structure and mineralisation BA Bisphosphonates BB Bone morphogenetic proteins BX Other drugs affecting bone structure and mineralisation eg. denosumab N Nervous system 02 Analgesics A Opioids B Other analgesics and antipyretics C Antimigraine preparations 03 Antiepileptics 04 Antiparkinson drugs A Anticholinergic agents B Dopaminergic agents 05 Psycholeptics A Antipsychotics B Anxiolytics C Hypnotics and sedatives 06 Psychoanaleptics A Antidepressants AA Non-selective monoamine reuptake inhibitors AB Selective serotonin reuptake inhibitors AF Monoamine oxidase inhibitors, non-selective AG Monoamine oxidase A inhibitors AX Other antidepressants B Psychostimulants, agents used for ADHD and nootropics C Psycholeptics and psychoanaleptics in combination D Anti-dementia drugs 07 Other nervous system drugs A Parasympathomimetics B Drugs used in addictive disorders C Antivertigo preparations X Other nervous system drugs P Antiparasitic products, insecticides and repellants R Respiratory system 01 Nasal preparations eg. decongestants 02 Throat preparations 03 Drugs for obstructive airway diseases 387

A Adrenergics, inhalants B Other drugs for obstructive airway diseases, inhalants 06 Antihistamines for systemic use S Sensory organs V Various 03 AC Iron chelating agents

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Appendix C. Letters of invitation, recruitment flyers, and participant information and consent forms

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Appendix D. List of presentations

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“Special needs patients referred to and treated at public hospital facilities in Australia” Meeting: Australian and New Zealand Academy of Special Needs Dentistry (ANZASND) Annual Scientific Meeting Date: Wednesday 17 May 2017 Location: Rydges Melbourne, Melbourne Australia

“Managing patients with special needs within the Australian public dental system” Meeting: Disability and Oral Health Collaboration meeting Date: Wednesday 23 October 2019 Location: Deakin University, Burwood Australia

“Domiciliary services improve access to dental services for functionally-dependent older adults” Meeting: The Gerontological Society of America Annual Scientific Meeting 2019 Date: Friday 15 November 2019 Location: Austin Convention Center, Austin, Texas USA

“Structured relationships and networks between specialists and general dentists improve the willingness of clinicians to treat individuals with special needs” Meeting: iADH Research Competition 2020 (Finalist) Date: Friday 2 October 2020 Location: Online (Zoom)

“Challenges faced by specialists in providing dental care for individuals with special needs.” Meeting: MDHS Graduate Research Student Conference Date: Tuesday 8 December 2020 Location: Online (Whova)

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Minerva Access is the Institutional Repository of The University of Melbourne

Author/s: Lim, Mathew Albert Wei Ting

Title: Overcoming barriers to access and provision of dental care for patients with special needs in the Australian public dental system

Date: 2021

Persistent Link: http://hdl.handle.net/11343/274311

File Description: Final thesis file

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