REPORT ON LUNG CANCER IN AUSTRALIA

LITERATURE REVIEW AND CONSULTATION ON FACTORS IMPACTING ON LUNG CANCER OUTCOMES

This project is an initiative of Cancer Australia’s National Lung Cancer Program funded by the Australian Government. The report was prepared by Curtin University. Report on Lung Cancer in Australia. Literature review and consultation on factors impacting on lung cancer outcomes ISBN: 978-1-74241-375-4 Online ISBN: 978-1-74241-376-1 Publications Number: D0161 Copyright Statements: Paper-based publications © Commonwealth of Australia 2011 This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from the Commonwealth. Requests and inquiries concerning reproduction and rights should be addressed to the Commonwealth Copyright Administration, Attorney-General’s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted at http://www.ag.gov.au/cca Internet sites © Commonwealth of Australia 2011 This work is copyright. You may download, display, print and reproduce this material in unaltered form only (retaining this notice) for your personal, non-commercial use or use within your organisation. Apart from any use as permitted under the Copyright Act 1968, all other rights are reserved. Requests and inquiries concerning reproduction and rights should be addressed to Commonwealth Copyright Administration, Attorney-General’s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted athttp://www.ag.gov.au/cca PROJECT TEAM

Curtin University Project Team Professor Moyez Jiwa Professor Patricia Davidson Ms Sarah McGrath Dr Phillip Newton Dr Michelle DiGiacomo Dr Wendy Chan She Ping Delfos Ms Louise Hadfield Professor Alexandra McManus Professor Sandra Thompson

Collaborators Professor Michael Dooley Dr Georgia Halkett Professor Ian Hammond Professor Mark Harris Dr Shane Pascoe Dr Martin Phillips Mr John Stubbs Professor Robin Watts

Literature review and national consultation on factors impacting on lung cancer outcomes | i

TABLE OF CONTENTS Project team i List of Tables v List of Figures v Appendices v Abbreviations vi Glossary vii Executive Summary x Patient factors x Provider factors xi System factors xi 1. Context 1 2. Objectives 2 3. Implications 3 3.1 Patient 3 3.2 Provider 4 3.3 Systems issues 4 3.4 Priority areas to decrease variations in lung cancer management in Australia 5 3.5 Initiatives in the short, medium and longer term 6 4. Approach 7 4.1 Literature review 7 4.2 Consultation phase 7 4.2.1 Expert Consultations 8 4.2.2 Consultation Round 1 8 4.2.3 Consultation Round 2 8 5. Results 9 5.1 Burden of disease 9 5.2 Guidelines 10 5.3 Practice 10 5.4 Research 11 5.5 Findings of Consultation Round 1 and Consultation Round 2 12

Literature review and national consultation on factors impacting on lung cancer outcomes | iii 5.5.1 Waiting times and access to treatments 12 5.5.2 Access to care 13 5.6 Priority areas for Guidance Material 17 5.6.1 Clinical guidance material 17 5.7 National studies 17 5.7.1 Patient factors 17 5.7.2 Provider factors 17 5.7.3 Systems issues 17 5.8 International studies 18 5.8.1 Patient factors 18 5.8.2 Provider factors 18 5.8.3 System issues 18 5.9 Data quality 18 5.10 Diagnostic and treatment data 19 5.11 Aboriginal Australians/other Australians and urban/rural comparisons 19 5.11.1 Priority areas for guidance material 21 5.11.2 Patient, provider and systems issues 21 5.12 Summary of review of evidence and consultation methods 21 5.13 Recommendations for guidance material and further research 21 5.13.1 Clinical guidance material 22 5.13.2 Research 22 5.14 Conclusions 22 References 23

iv | Report on lung cancer in Australia List of Tables Table 1: Strategies to decrease variation in lung cancer outcomes 5 Table 2: Views on referral for investigation, diagnosis and management of lung cancer 13 Table 3: Participants’ views on clinical environment 14 Table 4: Relative survival by region, lung cancer diagnoses in 1997–2004 21

List of Figures Figure 1: Factors impacting on diagnosis 15 Figure 2: Participants that should be included in the multidisciplinary team 16 Figure 3: Information to be included in guidance material 16

Appendices Appendix 1: Literature Review Search Strategies 29 Appendix 2: Existing clinical guidelines 30 Appendix 3: Australian Data 34 Appendix 4: Survey 1 and Survey 2 38 Appendix 5: Consultation Round 1 Results 62 Appendix 6: Consultation Round 2 Results 81 Appendix 7: Thematic Analysis from Expert Participants 109 Appendix 8: References 111

Literature review and national consultation on factors impacting on lung cancer outcomes | v Abbreviations ABS Australian Bureau of Statistics ACT Australian Capital Territory AIHW Australian Institute of Health and Welfare CHD Coronary heart disease CHF Chronic heart failure COPD Chronic obstructive pulmonary disease EBUS Endobronchial ultrasound EPs Expert participants GP General Practitioner MDT Multidisciplinary Team NHMRC National Health and Medical Research Council NSW New South Wales NT Northern Territory Qld Queensland SES Socioeconomic status SA South Australia SPs Survey Participants Tas Tasmania UK United Kingdom USA United States of America Vic Victoria WA Western Australia

vi | Report on lung cancer in Australia GLOSSARY Advanced lung cancer Cancer that has metastasised or is unlikely to be curable Biopsy A procedure to remove cells or tissues from the body for testing and examination under a microscope Bronchoscopy An examination of the inside of the windpipe, the bronchi, and/or the lungs using a lighted tube. The tube is inserted through the patient’s nose or mouth. Bronchoscopy may be used to find cancer or as part of some treatments to deliver therapeutic agents Chronic obstructive pulmonary disease A lung disease characterised by chronic obstruction of lung airflow (COPD) that interferes with normal breathing and is not fully reversible Clinical trial A research study in which patients volunteer to test new ways of screening, preventing, diagnosing, or treating a disease Clinical network Process for planning, coordination, delivery and evaluation of care in a defined clinical setting or geographical location Co-morbidity Two or more health problems at the same time Consultations Round 1 The first survey distributed via a secure online platform to identify experts’ opinions on the causes of variations in lung cancer care in Australia. Consultation Round 2 The second survey distributed via a secure online platform to identify guideline content and strategies to decrease variations in lung cancer care Computerised tomography (CT) scan A technique for constructing pictures from cross-sections of the body, by x-raying the body from many different angles Cultural competency Cultural competence in health care describes the ability of systems to provide care to patients with diverse values, beliefs and behaviours, including tailoring delivery to meet patients’ social, cultural, and linguistic needs Disability-adjusted life years (DALY) A measure used in burden of disease and injury estimates, which combines the years of life lost due to premature death (YLL) and the equivalent ‘healthy’ years of life lost due to disability or illness (YLD). One DALY represents one lost year of ‘healthy’ life. Endobronchial ultrasound (EBUS) An invasive procedure in which physicians use ultrasound devices inside the airways and the lung for exploration of the structures of airway walls, the surrounding mediastinum, and the lungs Expert Consultations Interviews that were conducted with experts in cancer care and consumers Expert Participants (EPs) Those that participated in the Expert Consultations

Literature review and national consultation on factors impacting on lung cancer outcomes | vii Gender Refers to the socially constructed roles, behaviour, activities and attributes that a particular society considers appropriate for men and women. The distinct roles and behaviour may give rise to gender inequalities Health Literacy The knowledge and skills required to understand and use information relating to health issues. Local Government Area A term used in Australia (particularly by the Australian Bureau of Statistics) to refer to areas controlled by each individual Local Government Mesothelioma Pleural mesothelioma is a cancer of the membranes of the lung. The commonest cause of mesothelioma is exposure to asbestos. This project does not cover mesothelioma Magnetic Resonance Imaging (MRI) A type of body scan that uses a magnet linked to a computer to make detailed pictures of areas inside the body. An MRI can be used to find cancer Non-small cell lung cancer One of the two main groups of lung cancers. This group includes squamous cell carcinoma, adenocarcinoma, large cell carcinoma and bronchiolo-alveolar cell carcinoma Oncologist A doctor who specialises in studying and treating cancer Positron Emission Tomography (PET) In a PET scan, the patient is given radioactive glucose (sugar) scan through a vein. A scanner then tracks the glucose in the body. The scanner’s pictures can be used to find cancer, since cancer cells tend to use more sugar than other cells Primary cancer The first or original cancer Prognosis The expected course of a disease and the chances of recovery Qualitative Thematic Analysis Thematic analysis is a method for identifying, analysing and reporting patterns within qualitative material. This process allows clear identification of prominent themes, and provides an organised and structured way of dealing with the narrative data. Radiation The emission of energy in waves or particles. Often used to treat cancer cells Radiation oncologist A doctor with specialist training in treating cancer patients using radiation Risk Assessment Determination of quantitative or qualitative risk related to a situation or a recognised threat Screening Checking for disease or precursors of a disease when there are no symptoms. Since screening may find diseases at an early stage, there may be a better chance of curing the disease

viii | Report on lung cancer in Australia Small cell lung cancer A type of lung cancer made up of small, round cells. Small cell lung cancer is less common than non-small cell lung cancer and often grows more quickly. The name is often shortened to SCLC. It is strongly associated with cigarette smoking Socioeconomic status (SES) The social standing of an individual or group in terms of their income, education, and occupation. An individual’s income, education, and occupational status are often closely interrelated Stage A descriptor (usually numbers 1–4) of the size of the cancer and how much it has spread Survey Participants (SPs) Those that participated in Consultation Round 1 and Consultation Round 2 Thoracic surgeon A doctor who specialises in chest and lung surgery

Literature review and national consultation on factors impacting on lung cancer outcomes | ix EXECUTIVE SUMMARY The Australian Institute of Health and Welfare (AIHW) has reported that lung cancer incidence will increase by an average of 190 cases per year from 2006–2010, reaching a projected total of 10,004 cases by 2010. Lung cancer accounts for over 9% of all cancer cases and 19% of cancer deaths in Australia. In 2006 there were 9563 cases and 7397 deaths due to lung cancer in Australia and only 12% of patients survived 5 years. It is the second leading cause of all deaths in men and the fifth highest cause of all deaths amongst women in Australia. In addition, there has been an increase in incidence and mortality rates among women. There is evidence of a poorer prognosis for those from rural and remote communities, lower socioeconomic areas and Aboriginal and Torres Strait Islander communities. This project deployed a multi-methods approach including: 1) a review of published and unpublished literature including government reports; 2) interviews with expert clinicians and consumers (n = 34); and 3) an online survey of health professionals and consumers. The first wave of the online survey Consultation( Round 1) received 137 responses with a completion rate of 74.7%. Consultation Round 2 received 150 responses with a completion rate of 73.3%. The sampling method achieved representation from every state and territory and across both public and private health sectors. This review has identified variations in management prior to the definitive treatment, although nation-wide data to confirm these observations are not available and this conclusion is based primarily on expert opinion and selected studies. Experts conclude that once a correct diagnosis is made and lung specialists are engaged, there is relative consistency in management. However, the patient trajectory prior to entry into the health care system is highly variable. Many of the factors resulting in poor outcomes are a function of patient circumstances and/or understanding and range from late presentation due to a failure to appreciate the urgent nature of symptoms and/or a reluctance to travel long distances to specialist centres. This report incorporates themes from the literature and interviews with experts and a small number of consumers as well as providing a snapshot of the opinions of a broad range of health professionals. The report will inform future Lung Cancer Program initiatives. The sample size overall and the higher proportion of responses from specialist providers and a relatively small number from primary care professionals should be taken into account when interpreting the results.

Patient factors A range of factors contribute to outcome variations. As in most diseases socioeconomic factors exert a strong influence. This is more pronounced in lung cancer where smoking rates are higher in lower socioeconomic groups and among Aboriginal and Torres Strait Islanders. Smoking is an increasingly stigmatised habit and the strong association with lung cancer contributes to patient delays in accessing health care services. Lung cancer is more common in older people, many of whom have other chronic conditions. Cough and dyspnoea, symptoms commonly associated with smoking related conditions, such as chronic obstructive pulmonary disease (COPD), coronary heart disease (CHD) and chronic heart failure (CHF) are more likely to be attributed to these conditions than to lung cancer. Expert consultation identified that the time of diagnosis is one of uncertainty for patients and there is less support available to those with lung cancer compared with other cancer groups. This may result in poorer outcomes. All phases of the project identified strong support for the role of the MDT. The need for the input of an expert MDT often requires patients and their families to travel long distances to specialist centres in order to access

x | Report on lung cancer in Australia experts who work within a MDT. The literature and expert consultation also indicate that some individuals may be reluctant to undergo treatment because of fear of adverse effects of chemotherapy and radiotherapy. In addition, financial concerns may be a barrier to individuals seeking appropriate treatment.

Provider factors As in most professional groups, specialisation is increasing and there is a need to address this factor in professional development and workforce planning. More favourable outcomes are achieved by specialists with a particular interest in lung cancer and therefore, exploring models to improve access is important. Consultations indicated that increasing specialisation in diagnostic testing and tumour profiling mean that professionals need to maintain currency in these skills. Furthermore, experts suggested that a greater emphasis on lung research from basic to translational research would create incentives and impetus for health professionals to specialise in lung cancer management. Experts stated that some health professionals may not be aware of the benefits of lung cancer treatment and as a consequence, may be reluctant to refer patients for specialist treatment. Data demonstrated the need to access specialist advice to support clinical decision making. Cancer experts emphasised the value of the MDT in improving health outcomes. However, it was generally considered that there is variability in the composition and role of these MDTs and that a lack of incentives in the private sector limited participation. Systems and personnel that promote coordination, particularly lung cancer nurses and care coordinators, were generally seen as favourable and useful in ensuring timely treatment. Experts who were consulted supported initiatives to increase the awareness of risk factors for lung cancer in primary care, enhance timely and appropriate diagnosis across all specialities, and update clinical guidelines, with implementation strategies and mechanisms for monitoring outcomes. The literature identified a need for health professionals to be aware of their own values and beliefs and the impact these may have on their clinical decisions.

System factors Throughout the consultations, coordination of care through an MDT was underscored as being important to decreasing variation in lung cancer outcomes. Health professionals working in public and private care settings and lung cancer care provided across settings were noted to be challenges to participation in MDTs. Providing care across health care systems and providers is a challenge noted across many conditions in Australia and is one of the foci of the National Health and Hospital Reform agenda. Importantly, this study identified that, outside research settings, there are no integrated and standardised mechanisms of data management to monitor process and outcome measures in lung cancer. Experts recommended negotiation between professional groups and policy makers to develop benchmarks and to monitor procedural volumes and outcomes. Updated clinical guidelines, including incentives for participation were also recommended.

Literature review and national consultation on factors impacting on lung cancer outcomes | xi

1. CONTEXT Lung cancer in Australia is the leading cause of death due to cancer and is the second leading cause of all deaths in men and the fifth highest cause of all deaths amongst women. In 2006 there were 9563 cases and 7397 deaths due to lung cancer in Australia and only 12% of patients survived 5 years.[1, 2] Although incidence and mortality rates of lung cancer are declining in men, there has been an increase in rates in women.[3, 4] Except for short-term survival after a diagnosis of small cell lung cancer, the prognosis for patients with lung cancer has not greatly improved.[5] Higher rates of lung cancer in Aboriginal and Torres Strait Islanders and those from socioeconomically deprived groups mean that prevention and therapeutic strategies need to be targeted and tailored to those with the highest need.[6] As the population ages it is likely that the incidence of lung cancer will rise among older people.[7] Lung cancer in the elderly, as at all ages, may occur in those who have never smoked, currently smoke or were previous smokers and in those exposed to second hand smoke.[8, 9] In response to the increasing disease burden, there have been improvements and innovations in diagnosis, management and models of care delivery for lung cancer.[10–12] The increase in complexity has implications for professional training and for the way in which health care services are organised, funded and delivered in primary, secondary and tertiary care. A major obstacle in achieving improvements in outcomes for lung cancer is that patients often present late when disease is advanced.[13] The absence of an effective screening tool is one of the factors challenging earlier diagnosis.[14] Although low-dose spiral computed tomography (CT) has proven to be effective in the early detection of lung cancer, the role of regular CT screening to reduce lung cancer mortality in heavy smokers has yet to be demonstrated and concerns remain about radiation exposure through repeated scanning.[15] Numerous ongoing large-scale randomised trials are under way in high-risk individuals to determine whether CT and other novel approaches to screening improve survival.[14,16] The cost effectiveness of screening tests, should they be demonstrated to improve survival, will also need to be considered.[17] Therefore, in the short term, it is likely that the greatest improvements in health outcomes for lung cancer will be leveraged through obtaining an earlier diagnosis. This report incorporates themes from the literature, interviews with clinical leaders and experts and a small number of consumers, and the results of two surveys sent to a broader range of health professionals. The sample size overall and the higher proportion of responses from specialist providers and a relatively small number from primary care professionals should be taken into account when interpreting the results.

Literature review and national consultation on factors impacting on lung cancer outcomes | 1 2. OBJECTIVES The objectives of the Lung Cancer in Australia: Literature review and consultation on factors impacting on lung cancer outcomes, hereafter referred to as ‘study’ are: 1. To identify gaps in the optimal management of lung cancer by conducting a review of the evidence and through consultation and research into the investigation, referral, treatment and care of people with symptoms and signs that may indicate lung cancer or who have lung cancer; 2. Identify reasons for variations in outcomes; 3. Through a process of expert consultation, identify priority areas for guidance material to improve health outcomes. Based upon a review of published and grey literature, consultation with experts and research undertaken for this project, it is apparent there are variations in lung cancer management and outcomes in Australia. Experts who participated in this project suggest that once a correct diagnosis is made, and lung specialists engaged, there is less variability in care. However, the patient trajectory prior to the diagnosis and treatment of lung cancer is highly variable and many of the factors impacting upon health care outcomes are a function of patient circumstances and/or understanding and range from late presentation to reluctance to travel long distances to specialist centres. Further, it has been identified that inefficiencies in the health care system, such as waiting for tests, can result in delays.

2 | Report on lung cancer in Australia 3. IMPLICATIONS The factors associated with the diagnosis and referral processes for lung cancer, priority areas for clinical guidelines and the implications of the study findings are summarised below. Data supporting these conclusions are reported further in this report and in the appendices.

3.1 Patient Consumer issues in lung cancer care are complex and are linked to physical, social, psychological and sociodemographic characteristics.[18, 19] An important factor to consider in lung cancer is that patients are frequently elderly with multiple co-morbid conditions.[20, 21] The high symptom burden associated with COPD, CHF and functional decline and physiological changes in ageing may mean that patients fail to recognise the significance of symptoms. It has been identified that health care systems are not always well configured to meet the needs of individuals with chronic and complex diseases.[22] The literature emphasises that lung cancer is a highly stigmatised condition, primarily because of the association with smoking.[23] Available information suggests that embarrassment and shame experienced by individuals who fail to stop smoking are important reasons why individuals do not seek medical care for symptoms such as cough or shortness of breath. Issues relating to stigma are of significance in analysing variations in lung cancer management particularly in Aboriginal people.[24] The shock and disbelief associated with a diagnosis of lung cancer mirror reactions to bad news delivered in other life threatening illnesses.[25] Therefore ensuring consumers have access to appropriate and timely information and support is important. Interventions that empower patients to seek help earlier for symptoms may promote more timely diagnosis in individuals with lung cancer. Assistance in navigating the system has been identified in the literature and from consultation with experts as an important concern.[26, 27] The increasing importance of factors such as lower socioeconomic status and impaired health literacy on influencing decisions to undergo treatment are important considerations in developing and evaluating health care services.[28] Recommendations to address consumer concerns: • Target high risk groups to increase the awareness of lung cancer, such as Aboriginal communities and culturally and linguistically diverse groups where rates of smoking are higher. • Provide consumers with information outlining a realistic picture of lung cancer care and the importance of accessing specialist care and MDTs (for example it may be necessary to travel to receive specialist care). • Where possible, provide access to care coordinators or lung cancer nurses to assist the patient in navigating the health care system. • Develop and test models of intervention that empower consumers at high risk to monitor their health status for changes in symptoms and provide an action plan for when changes are noted. • Inform professionals of the need to be aware of the stigma associated with lung cancer and smoking when discussing these with patients • Provide information that is culturally appropriate and considers issues such as health literacy.

Literature review and national consultation on factors impacting on lung cancer outcomes | 3 3.2 Provider A range of providers is necessary to improve lung cancer diagnosis and management. Within the specialist domain, expertise in respiratory medicine, oncology, radiology, radiotherapy, nursing and allied health are crucial. The general practitioner plays a crucial role as the gatekeeper to specialist services and early diagnosis.[29] The Australian government is currently undertaking reform initiatives in the primary care setting to support general practitioners to manage chronic conditions.[28] Recommendations to address provider issues: • Provide access to evidence based guidelines, supported by research, to facilitate diagnosis and treatment allocation in lung cancer care. • For clinical guidelines to be supported by implementation strategies and processes for monitoring quality of outcomes. • To have information sources identifying specialist lung cancer providers and services. • To increase the awareness of lung cancer in general practice and provide information regarding evidence based treatment guidelines. • To promote expertise and interest in lung cancer among health professional groups.

3.3 Systems issues The Australian health care system is in a phase of dynamic health care reform. The study has identified a number of issues related to outcomes for lung cancer that may be encompassed within a reform agenda.[30, 31] Suggested foci at a systems level: • Continue to support system wide strategies to decrease smoking. • Facilitate guideline development for lung cancer care with professional groups, non-government organisations and consumers. • Support integrated mechanisms of data management and monitoring that are linked to clinical governance strategies. • Provide incentives and decrease barriers for health care professionals to participate in MDTs. • Create links between health care jurisdictions to facilitate coordination of care, monitoring of outcomes and integration of health and social services.

4 | Report on lung cancer in Australia 3.4 Priority areas to decrease variations in lung cancer management in Australia In the second phase of the consultation survey, experts were asked to identify strategies to improve lung cancer care. These are listed in Table 1 ranked by number of responses.

Table 1: Strategies to decrease variation in lung cancer outcomes

1. Educational initiatives for general practitioners with strategies to increase the awareness and recognition of symptoms (72) 2. Referral and access to MDTs to assist in diagnosis, staging and treatment (65) 3. Evidence based guidance to promote timely investigation and diagnosis of lung cancer (52) 4. Strategies to increase public awareness of lung cancer, diagnostic strategies and available therapies (51) 5. Recommendations to assist clinicians in monitoring patients with ongoing symptoms when investigations do not initially confirm lung cancer (37) 6. Guidelines for MDTs specific to lung cancer (36) 7. Strategies to improve communication across the public and private sectors (21) 8. Information targeted at consumers and health care professionals on the benefits of chemotherapy and radiotherapy for managing symptoms and improving quality of life (20) 9. Monitoring of quality indicators, such as time from diagnosis to treatment (16) 10. Identification of incentives for the private sector to participate in MDTs (15) 11. Promotion of lung cancer specialists in surgery and oncology (14) 12. Guidelines on the indications for surgery in lung cancer (9) 13. Access to information identifying the location of lung cancer specialists (8) 14. Algorithms to calculate co-morbidity risk for all types of lung cancer treatments (6)

Literature review and national consultation on factors impacting on lung cancer outcomes | 5 3.5 Initiatives in the short, medium and longer term The strong association between the incidence of lung cancer, smoking and social determinants means that addressing the variation in lung cancer outcomes is a complex and multifaceted process.[1] Already there are initiatives being undertaken by Federal and State Governments in Australia to achieve a decrease in tobacco usage. These initiatives are critical to decreasing the burden of lung cancer in the longer term. Downstream, where patients are at high risk of lung cancer, the following factors need to be addressed in the short and medium term: • Increase awareness of lung cancer in general practice. • Target factors that result in patients with probable lung cancer accessing specialist care for diagnosis, tumour staging and treatment. • Promote strategies to facilitate consumers and health professionals’ awareness of the risk of lung cancer and evidence based treatment. • Implement processes to ensure coordination of care to maximise the most efficient use of resources, such as clinical networks. • Review clinical guidelines to identify evidence—based treatment strategies and guidelines for MDTs, tailored to the Australian health care system, recognising the importance of the general practitioner in identifying patients at high risk in primary care. • Adopt data collection mechanisms to identify potential variations in lung cancer management and outcomes and identify foci for interventions. • Incorporate benchmarking measures, such as time from referral to diagnosis, as part of clinical guideline development. • Target and tailor interventions to address lung cancer in high risk populations, particularly Aboriginal populations, and those in low socioeconomic groups. • Increase funding for basic, clinical, translational and outcome lung cancer research. In the longer term, a coordinated approach between government, professional organisations, non-government organisations and consumers is needed to address the burden of lung cancer in Australia.[29] These processes will need to focus on addressing social determinants of health and ensuring equitable access to health care and greater coordination across the health care system.[32]

6 | Report on lung cancer in Australia 4. APPROACH This study was conducted through undertaking a literature review and a three step consultation process as indicated in the diagram below.

LITERATURE

Surveys 1: Factors impacting on outcomes and 2: Priority areas to SURVEYS INTERVIEWS Interviews with improve outcomes 34 experts: Factors sent to 1500 (137 impacting on outcomes and 150 respondents respectively).

Findings from the literature review and three streams of consultation are synthesised throughout the report. For clarification, throughout the report, those that participated in the Expert Consultations are to be discussed as Expert Participants (EPs) and those that participated in Consultations Round 1 and 2 are to be discussed as Survey Participants (SPs). Qualitative data is provided in Appendices.

4.1 Literature review Given the broad range of issues covered by this project, a wide variety of studies were reviewed including; quantitative, qualitative, mixed method and descriptive studies, literature reviews and government reports (Appendix 1). In particular, existing clinical guidelines were reviewed for relevance to the study (Appendix 2). The studies retrieved during the literature search were examined for relevance against the scope of the project. With the exception of a systematic review of MDTs, the majority of studies reviewing treatment patterns included analysis of administrative data.

4.2 Consultation phase There were three streams to the consultation phase: interviews with health professionals and consumers and two surveys sent to a broad range of health professionals. These two surveys (round 1 and 2) involved a modified Delphi process undertaken using two different sets of questions and a secure online platform.

Literature review and national consultation on factors impacting on lung cancer outcomes | 7 The participants were recruited by snowball sampling to ensure broad coverage of health professionals and national coverage using professional networks and a commercial distribution network that sent the survey to 1500 people. The surveys were sent to the same people but it is not known whether different individuals responded to the two surveys as participants were not identifiable. Questions were designed to elicit level of agreement to statements. The majority of questions were framed in a Likert score framework with higher scores identifying a higher level of agreement.

4.2.1 Expert Consultations Consultations were conducted with 34 experts—six respiratory physicians, four medical oncologists, two public health physicians, four palliative care specialists, three consumers, one radiologist, four general practitioners, one surgeon, two care coordinators, one dietician, three Aboriginal Health Care Workers and three individuals working within cancer policy implementation. Participants were identified based upon expertise, availability and clinical leadership roles. The length of interviews varied from 10 minutes to 45 minutes. Detailed notes were taken from each consultation and analysed using qualitative thematic analysis.[33, 34] Themes were organised into system, patient and provider factors as these have been identified as integral to driving health care reform.[35] Verbatim quotes to illustrate these themes are provided in Appendix 7.

4.2.2 Consultation Round 1 Consultation Round 1 received 154 responses to the survey with a completion rate of 74.7% (137 respondents were included in the analysis). Detailed sociodemographic data are provided in Appendices 5 and 6. Not all respondents completed all questions. Correction for missing data was not undertaken as part of the analysis. Sixty-five per cent of the respondents were from the acute care or specialist sector and 22% from primary care.

4.2.3 Consultation Round 2 Consultation Round 2 elicited strategies to improve lung cancer care and received 150 responses with a completion rate of 73.3%. Seventy percent were from the acute care or specialist sector and 17% from primary care.

8 | Report on lung cancer in Australia 5. RESULTS

5.1 Burden of disease Globally, lung cancer is the leading cause of cancer death, accounting for 1.3 million deaths per year.[36, 37] Deaths are increasing in the developing world as a consequence of the promotion and uptake of tobacco use. In Australia, lung cancer remains a significant and growing challenge. Lung cancer is the leading cause of death due to cancer and is the second leading cause of all deaths in men and the fifth highest in women.[38] Among females, incidence is projected to increase by 38% to 4,001 cases by 2011 and in males by 17% to 6,301 cases by 2011.[39] This increase is primarily attributable to past high smoking rates. Of note for 2010, World Tobacco Day had a gendered theme for the first time underscoring the increase in smoking rates in women. For many people with lung cancer (approximately 80%), their disease is inoperable because it has been diagnosed at an advanced stage.[38] Of those diagnosed with lung cancer, 35% will be alive after one year and only 8% at 10 years.[40] Many disparities in health outcomes are attributable to patient, provider and systems issues, some of which can be addressed by increasing awareness. In lung cancer, there is increasing recognition of the role of genetics and epigenetic factors in identifying higher risk populations. However, in lung cancer, there are some specific issues which contribute to adverse outcomes. These include: • The absence of a valid and reliable screening test for lung cancer[41] • The strong association of smoking with lung cancer and associated stigma and shame which may indirectly influence outcomes when people consider themselves blameworthy for their predicament[42] • Late presentation [43] • Co-morbid conditions particularly COPD and CHD[44] • A nihilistic view of lung cancer among some clinicians and patients[45] • The low prevalence of lung cancer in general practice limiting experience and knowledge of local networks and best practice • Limited access to or awareness of MDTs • Lack of integration and coordination across data management systems • Delays in diagnosis, staging and treatment • Lack of coordination of treatment across public and private sectors • Lack of awareness of treatment of lung cancer and the potential for survival • Many professional groups contributing to improving outcomes (e.g. general practice; surgery; respiratory medicine; medical oncology; radiation oncology; radiology). This can also challenge guideline development • Increasing numbers of older people (current and previous smokers) developing lung cancer as the population ages[46] • Costs associated with lung cancer care[47] • The cultural diversity of Australia and high rates of smoking in some population groups.[29]

Literature review and national consultation on factors impacting on lung cancer outcomes | 9 Internationally, in addition to advances in biomedical treatment, many of the improvements in lung cancer care have resulted from increasing awareness, developing clinical guidelines and implementation strategies and the fostering of clinical leadership, networks and resources. Improvements in coordination of clinical care and communication between health professionals are not unique to lung cancer and could be addressed by recently announced national health reform initiatives.[48, 49]

5.2 Guidelines Several guidelines encompass an evidence based approach to lung cancer care in Australia. They include the Clinical Practice Guidelines for the Prevention, Diagnosis and Management of Lung Cancer 2004 and the Assessment and Management of Lung Cancer Evidence based guidelines: A Guide for General Practitioners 2005, both produced or supported by The Cancer Council Australia and approved by the National Health and Medical Research Council; and the Smoking Cessation Guidelines for Australian General Practice: Practice Handbook 2004. Currently, there are no recommended treatment timelines for lung cancer in Australia. Internationally, there are a range of guidelines, varying in the degree of prescription. See Appendix 2 for a list of international lung cancer guidelines.

5.3 Practice The small number of individuals with lung cancer presenting to an individual practitioner in primary care mean that health professionals are often less attuned to the likelihood of lung cancer. In fact, several GPs in this study said that they did not see lung cancer in their practice. However, one general practitioner working in an Aboriginal Medical Service commented that there should be an increased emphasis on considering the possibility of lung cancer in chronic care programs and Adult Health Checks. Concerns relating to radiation exposure and the risks associated with biopsies may challenge appropriate and timely diagnosis. In addition, when cancer is suspected and awaiting definitive diagnosis, delays can occur. One medical oncologist commented: Well“ by the time the patient gets to the GP, the chest X-Ray gets reported, the patient goes back to the GP then goes to the respiratory physician, who orders more tests, waits for the PET scan, then waits for a review appointment and then has a biopsy scheduled—weeks and sometimes months march on (EP).” Another medical oncologist commented: “I even have one patient who had three admissions to the Emergency Department with shortness of breath, abnormal findings were noted on the chest X-Ray but they still didn’t get to the right specialist and this is in a capital city (EP).” Consultations have revealed difficulties with access to timely and appropriate treatment. Ideally, a strengthening of a coordinator role may achieve efficiencies and better outcomes. An expert participant said that lung cancer was the ‘poor relation’ and the model of breast cancer with community engagement, awareness, research and innovation was something to aspire to. The lack of interest in some specialties was also commented on particularly in respiratory medicine—“there is much more emphasis on sleep (medicine) in advanced training than lung cancer” (EP).

10 | Report on lung cancer in Australia 5.4 Research Lung cancer research in Australia receives less public funding than other cancers.[50] No data were obtained on the amount of private funding for lung cancer research. In addition, in the last 20 years, the AIHW has not produced a publication on lung cancer; however it has produced many on specific cancers including breast, cervical, ovarian, bowel and skin cancer. An expert participant commented that increasing the emphasis on basic research will have a flow on effect on applied and health system research. Although the study focused on the process of diagnosis and management, expert consultation reinforced the public health approach to decreasing smoking and increasing the awareness of the signs and symptoms of lung cancer amongst the general public and primary health providers. An important observation of the research, and also of concern to experts, is the absence of standardised reporting systems to monitor lung cancer management and outcomes. The majority of respondents identified the need for improved diagnostic and technical solutions to improve care. A strong theme from the expert consultations was that addressing the improvement of process issues, particularly the time of identification of a suspicious lesion to definitive diagnosis and treatment, may leverage significant improvements in outcomes. Expert participants (n=8) found that in their experience, delays in receiving treatment of up to several months could occur, particularly in remote locations. These delays are of concern in a condition with such a poor prognosis. Process management and quality improvement may facilitate improvements and decrease variations in care.[41] Delays were not confined to regional and remote centres. Three experts felt that in outer metropolitan regions similar delays were occurring. The reasons for perceived delays are complex and multifaceted. One Expert Participant said. “It is who makes the decision that makes the difference”. Similar issues were raised in the online surveys. Overwhelmingly, MDTs emerged as a significant element of the solution to coordination and appropriate diagnosis and staging. Implicit in the identification of the MDT was the recognition of the need to cater specifically for lung cancer patients and to identify appropriate providers and services. One medical oncologist interviewed had organised their clinic so that urgent cases could be readily accommodated and state-based tumour groups facilitated networks and referrals. The role of the GP in monitoring individuals at high risk, facilitating the correct diagnosis and supporting the patient and their family during treatment and symptom management was emphasised. Engaging the GP, as gatekeeper to specialist services, is an important factor in ensuring timely diagnosis and access to appropriate treatment. Referral and refinement of care pathways once referred for specialist care and promotion of communication, coordination and integration across the private and public sector, have emerged from this review as factors to decrease variability in treatment and improvement in outcomes. Expert participants spoke of the barriers leading to late presentation. The barriers were thought to be multifactorial, particularly in the Aboriginal population. There are many issues that result in Aboriginal Australians presenting late and, as a result, having a poor prognosis with a very small proportion receiving treatment. Three experts considered that the Aboriginal population under-reported their morbidity related to smoking and COPD. In addition, the expert participants suggested that lung cancer is not always seen as a treatable health issue within the Aboriginal community and amongst primary healthcare professionals.

Literature review and national consultation on factors impacting on lung cancer outcomes | 11 The issue of stigma arose throughout the consultations, particularly with the consumer representatives. A consumer who has never smoked remarked that smoking status was always the first question asked by health professionals. Although this is understandable and part of best practice, perhaps health professionals could approach such matters with greater sensitivity.[51] For those who have smoked or who currently smoke, issues of guilt and shame impact upon the decision to seek healthcare. For the non-smoker, there was the additional distress of believing the diagnosis was unfair. Health professionals’ must therefore take this into consideration, particularly when dealing with vulnerable groups. Consumers also described that the time of diagnosis was the most distressing period, as they were faced with making many decisions as well as coping with the emotional impact of the diagnosis. The three consumers interviewed found that at diagnosis there was little support and little information provided. They found it challenging to navigate the complexities of the health care system. This issue of limited access to information was not only raised by consumers but also health professionals. Expert participants considered that options and treatments are not always accurately conveyed to the patient. Experts also suggested that the patient’s perceptions of treatments, such as chemotherapy and radiotherapy may impact on an individual’s reticence to undergo therapy. It was considered that patients are concerned about the morbidity associated with the treatments, particularly as the disease is known to have a poor prognosis. However, in spite of these factors being identified, it was acknowledged that patients making these choices were in a minority. “Very few people when faced with the facts refuse treatment “(Surgeon EP), ”Dad always said he wouldn’t go through chemo after watching my mother go through it, but when he was diagnosed, even though his prognosis was poor, he went ahead with radiotherapy and chemotherapy” (Consumer EP).

5.5 Findings of Consultation Round 1 and Consultation Round 2

5.5.1 Waiting times and access to treatments In the expert consultations, concern was expressed regarding waiting times and access to treatments. It was therefore considered important to explore this issue in the survey. Consultation Round 1 revealed that of those Survey Participants that responded to the question, 30% did not have access to biomarkers such as epidermal growth factor receptor (EGFR) and 12% did not have access to PET scans. However, waiting times for investigations recorded in Survey 1 were generally consistent with recommended international benchmarks (see Appendix 5). Qualitative data demonstrated better access to services via the private sector as a factor in facilitating timely treatment and also the opportunistic aspect of accessing optimal networks. Respondents were asked about statements on barriers and facilitators that were identified in the literature and during preliminary consultations. Mean scores shown in Table 2 indicate that the poor prognosis had a minimal influence on referral for treatment. Emerging from interviews was the sense that patients wanted treatment, but sometimes costs associated with travel were a deterrent to accessing it.

12 | Report on lung cancer in Australia Table 2: Views on referral for investigation, diagnosis and management of lung cancer Question asked: Over the next seven statements we are interested in identifying your level of agreement with a series of statements. Each statement will be marked 1 to 10. One (1) denotes that you strongly disagree with the statement while 10 shows that you strongly agree with the statement.

Mean score No. of responses Question asked (standard deviation) to question There is good access to diagnostic services in my practice setting 8.00 (2.15) 113 In my clinical setting there is access to a multidisciplinary care team to decide 7.68 (2.41) 110 treatment options High levels of comorbidities among patients makes it challenging to manage 7.30 (2.10) 110 patients with lung cancer There are clear guidelines for diagnosis and management of lung cancer in the 7.24 (2.13) 110 oncology setting There are clear guidelines for diagnosis and management of lung cancer in 5.48 (2.41) 109 general practice High levels of comorbidities make me less likely to pursue aggressive treatment 5.40 (2.76) 110 Patients are reluctant to proceed with lung cancer treatment because of the fear 4.89 (2.43) 110 of the side effects of treatment Distance impacts on my ability to access services for my patients 4.23 (3.08) 110 Overall the prognosis for lung cancer is poor and this influences my readiness to 3.35 (2.36) 110 refer and initiate treatment

5.5.2 Access to care The lowest mean scores impacting on the access to services were transport and residential facilities. In interviews and consumer consultations travel to specialist centres was discussed frequently as a barrier to treatment. Balancing this perception is the importance of communicating to consumers the need to travel to access specialist treatment. Providing transportation, housing and support services were identified as important to ensure optimal management. The increased costs associated with travel and the capacity to obtain better access through the private system were identified in health professional and consumer consultations. These comments show the influence of socio-economic status and other factors such as distance in accessing care and explain to some extent the observed survival differences.[40] In both consultation rounds, strong support for MDTs was demonstrated. The MDTs were seen to be critical for accessing expert opinion and optimal treatment decisions (Table 3).

Literature review and national consultation on factors impacting on lung cancer outcomes | 13 Table 3: Participants’ views on clinical environment Question asked: Over the next series of questions we are interested in identifying your level of agreement with a series of statements. Each statement will be marked 1 to 10. One (1) denotes that you strongly disagree with the statement while 10 shows that you strongly agree with the statement.

Mean score No. of responses Question (standard deviation) to question Multidisciplinary care teams are integral to improving lung cancer care 8.69 (1.98) 107 The coordination of lung cancer services in my setting is adequate to provide timely, 7.29 (2.19) 107 evidence based therapies There is adequate resources in my clinical practice setting to provide care according 6.91 (2.67) 106 to clinical guidelines and treatment recommendations In my clinical practice setting we routinely review lung cancer cases to critically 6.11 (3.32) 104 discuss and evaluate management Travelling to tertiary centres for treatment influences patients and their families 6.07 (2.45) 107 motivations to access treatment In my clinical practice setting there are clinical guidelines for screening, diagnosis 5.98 (3.03) 104 and management of lung cancer I am readily able to access data to allow me to monitor clinical outcomes for patients 5.77 (2.99) 102 with lung cancer Waiting times for tests such as PET scans influence the timely access to treatment 5.75 (2.83) 102 Lack of coordination across multiple providers adds to unnecessary delays in 5.57 (2.61) 107 patient treatment In my practice there are clear protocols for the management of symptomatic patients 5.23 (2.92) 104 with normal chest X-rays Lack of coordination of care impacts on the diagnosis and referral for the 4.98 (2.63) 106 management of lung cancer The stigma associated with lung cancer impacts on individuals’ motivation to access 4.79 (2.66) 107 services and treatments Many health professionals fail to appreciate the need for urgent referral and 4.74 (2.85) 108 management of lung cancer Health care professionals have a bleak view of the prognosis of lung cancer and are 4.17 (2.38) 109 reticent to refer for definitive treatment There is limited expertise for the management of lung cancer in my 2.94 (2.39) 106 clinical practice setting

Following analysis of the data from Consultation Round 1 and after consultation with Cancer Australia, the second survey was designed to obtain consensus on where guidance material would have the greatest impact on improving outcomes. In Consultation Round 2, 45% of respondents stated that they did not perceive there to be variations in the use of staging and diagnostic procedures. Whereas 51% described that there were delays in the diagnosis and staging of lung cancer. Over 30 of 150 Survey participants provided explanations of variation in the free text fields (see Appendix 6). Almost half (49%) of the participants agreed or strongly agreed that variations

14 | Report on lung cancer in Australia in the evidence-based use of diagnostic and staging investigations of lung cancer contribute to variations in outcomes, and an additional 26% somewhat agreed. When asked about factors impacting on the accurate and timely diagnosis of lung cancer, patient-related factors such as delay in seeking treatment and distances needed to travel for treatment were seen as issues impacting on care (Figure 1).

Figure 1: Factors impacting on diagnosis

10 1 = Strongly disagree 9 10 = Strongly agree 8 xx No. of respondents 7 6 5 4 3

Mean level of agreement 2

1 117 117 117 117 115 115 117 115 117 117 117 0

Futility HP Distance Patient delay No followup Futility patient Decision delay Comorbidities Lack recognition No Access MDT Patient reluctance Access guidelines

(1 = Strong disagreement, 10 = Strong Agreement) Issues related to systems and processes were reinforced many times with Expert Participants. One surgeon commented, “If they get to my clinic it is all OK, I know the right people with the expertise and experience— it is a one stop shop”. Half of the participants (51%) saw there was a variation in appropriate and timely referral for diagnostic and staging investigations in their practice environment. Of those that answered (48%), overwhelmingly 93% saw that these variations contributed to adverse outcomes, although 78 participants (52%) did not answer this question suggesting that this is a challenging concept and perhaps challenging to prove in individual clinical settings. The majority of participants (59%) did not have clear protocols for the monitoring of patients with respiratory symptoms who are not diagnosed with lung cancer on initial presentation and 61% of participants stated that guidance material to monitor patients with a high risk of lung cancer would be beneficial. Over half of participants (53% at staging and diagnosis; 58% at treatment) reported being able to access an MDT. This was reflected in the Expert Consultations. Figure 2 presents opinions on who should participate in an MDT. Although the involvement of GPs was considered to be optimal, practical considerations to participation were cited as potential barriers to involvement. Expert Participants reported the need to explore issues, such as video conferencing, to ensure access to expert opinion especially in relation to complex cases.

Literature review and national consultation on factors impacting on lung cancer outcomes | 15 Figure 2: Participants that should be included in the multidisciplinary team

Yes No

100 90 80 70 60 50 40 30 20 Percentage of respondents (%) 10 0

Surgeon

Medical oncologist General practitioners Respiratory physiciansRadiation oncologists Palliative care physicians

Care coordinator / Lung cancer nurse

Just under half of participants (42%) had observed variations in access to MDTs. The time taken to participate in these meetings and the location of specialists across the public and private sectors were seen as the greatest barriers. Expert consultation and survey results identified that the interface between the public and private sector was the greatest challenge in configuring an MDT for treatment and planning.

Figure 3: Information to be included in guidance material

High risk population identification On-going monitoring strategies for non-specific results Managing comorbidities Determining prognosis Surgery suitability and operative risk Evidence based recommendations for diagnosis Evidence based strategies for treatment Evidence based strategies for palliation Provision of target timelines Adjunctive symptom management strategies 0 1 2 3 4 5 6 7 8 9 10

Mean level of agreement

(1 = Strong disagreement, 10 = Strong Agreement)

16 | Report on lung cancer in Australia 5.6 Priority areas for Guidance Material

5.6.1 Clinical guidance material In the Expert Consultations, Expert Participants stated that although guidelines existed, there was little emphasis on risk assessment facilitating an early diagnosis. When asked to identify where clinical guidance materials would have the greatest impact, all areas listed received strong support, particularly investigations leading to early diagnosis, guidelines for diagnosis and staging and outcomes for measuring the quality of lung cancer care. Figure 3 identifies areas to target for clinical guideline development.

5.7 National studies

5.7.1 Patient factors Achieving earlier presentation is critical, therefore it is important to consider individuals’ knowledge, attitudes, beliefs and health seeking behaviours. It is important to note that smoking cessation does not mean that the risk of lung cancer does not remain.[25, 52] Therefore it is important that there is ongoing surveillance to monitor symptoms in former smokers. Identifying strategies that increase support to patients and decrease the uncertainty associated with diagnosis have been identified as potentially useful.[23, 26] Addressing barriers in high risk populations, such as Aboriginal populations, is recognised as important.[53–55]

5.7.2 Provider factors There are limited Australian data addressing specific provider factors impacting on diagnosis, referral and treatment including thresholds for referral, follow-up after normal CXR if symptomatic, knowledge of MDTs and beliefs about the value of cancer specific treatment of lung cancer. The consultation phases have elucidated some of these factors, such as perceptions of nihilism.

5.7.3 Systems issues Data are available showing that in some instances, there is less than optimal access to treatment and that reorganisation of the health care system can afford benefits.[56–58] For example, radiotherapy is an important aspect of lung cancer treatment. A series of studies undertaken by Vinod in NSW describes less than optimal use of radiotherapy, optimal utilisation rate being between 45% and 68% at initial diagnosis.[55] The Queensland Integrated Lung Cancer Outcomes Project (QILCOP) uses a data collection system based on data elements from the Australian National Cancer Control Initiative (NCCI) common clinical data set for lung cancer.[51] Jiwa et al reviewed 950 lung cancer patients registered on the cancer registry database from April 2006 to March 2007. [13] Minimal improvements in lung cancer outcomes were noted from previously published studies. Challenges due to long distances were also identified.[59]

Literature review and national consultation on factors impacting on lung cancer outcomes | 17 5.8 International studies

5.8.1 Patient factors International studies reveal that delays in seeking health care impact on appropriate and timely diagnosis. The stigma and shame associated with smoking has been identified as a factor contributing to delays.[60] Approximately two thirds of patients with NSCLC are ≥ 65 years old. Surveillance, Epidemiology, and End Results data[61] suggest that the percentage of patients with lung cancer who are > 70 years old is close to 50% in US studies, yet elderly patients are generally underrepresented in clinical trials. Participation of elderly patients with advanced lung cancer in national clinical trials has ranged from 15% in the early 1990s to 29% in more recent studies.[62]

5.8.2 Provider factors Surgeons who specialise in lung cancer surgery appear to achieve better outcomes.[63, 64] Of patients who did not receive chemotherapy, 36% were never assessed by a physician who provides chemotherapy. Patients living in certain areas, those diagnosed in more recent years, and those who received care in a teaching hospital were all more likely to see a cancer specialist. These factors were unrelated to subsequent treatment decisions, however. Conversely, age and comorbidity did not have a significant effect on whether a patient was seen by an oncologist, but they were associated with the likelihood of subsequently receiving chemotherapy. Nonmedical factors are important determinants of whether a lung cancer patient is seen by a physician who provides chemotherapy. After seeing such a physician, treatment decisions seem to be mostly explained by appropriate medical factors. Racial and socioeconomic disparities still exist both at diagnosis and treatment phases. As therapeutic options expand, referring physicians need to ensure that patients are given the opportunity to consider all treatment options.[65] A survey undertaken in New Zealand identified that specialist groups varied in their choices of treatment for NSCLC and international recommendations were not always followed.[65]

5.8.3 System issues Racial and ethnic disparities in accessing treatment have been consistently noted. [66, 67] However, studies in other areas, such as acute myocardial infarction, show that these differentials can be addressed by focusing on organizational performance. [68, 69] What is evident is that developing clinical practice guidelines, augmented by implementation and monitoring strategies can afford benefits. [70] For example, a recently published article from the UK has shown that improvements can be made by implementing quality assurance processes and benchmarking exercises. [71]

5.9 Data quality Compared to other countries, the quality of population-based Australian cancer data is good, however differences in timeliness across jurisdictions may affect the availability of data at both local and national levels. Without collation of national data, population-based registries have limited applicability beyond public health surveillance and research.[72] The lung cancer data set under development is expected to include more detailed information such as staging at diagnosis, histological sub-type, treatment, time to recurrence and outcomes other than survival. This will provide more specific information on treatment outcomes and allow more targeted research to be undertaken.

18 | Report on lung cancer in Australia Clinical registry models exist in all states, but vary between states. Western and South Australia have hospital- based registries, New South Wales has a pilot clinical registry program, Queensland has a web-based data system, and Victoria has introduced legislative provision for the central collection of National Cancer Control Initiative (NCCI) Clinical Cancer Core Data Set items in its population-based registry.[13, 53–55] At present the data relating to incidence, mortality and survival across gender, age, geographical location, Aboriginal and non-Aboriginal populations, socioeconomic status and histological type are included in state data sets, but are not always available from Cancer registries. However, at a national level such stratification of lung cancer data rarely exists. Whilst data on incidence and mortality is complete, data collected during the course of the disease are not publically available in reports or publications. Thus, data on differences across varying groups in outcomes, treatment offered, percentage of patients histologically confirmed, and treatment ultimately obtained, are lacking and have not been included in state and national publications.

5.10 Diagnostic and treatment data With the exception of isolated research studies in Australia there is no consistent information on the percentage of patients with histologically confirmed lung cancer who were offered or received active treatment.[68] Including this in existing data systems may leverage benefits.[73]

5.11 Aboriginal Australians/other Australians and urban/rural comparisons Aboriginal incidence and mortality data exhibit a pattern that is different to that of the non-Aboriginal population. Lung cancer incidence was significantly higher in the Aboriginal population than in the non-Aboriginal population in the 50–64 year age groups in the Northern Territory, Western Australia and South Australia and was the most common Aboriginal cancer in all three jurisdictions.[74] Across all three jurisdictions, Aboriginal populations had higher rates of smoking than the non-Aboriginal population and thus lung cancer is an important comparative indicator of health between these populations.[74] Lung cancer is the most common cancer amongst Aboriginal Australians and accounts for the highest number of cancer deaths (27%).[75] Aboriginal Australians are 2.5 times more likely to die within five years of a cancer diagnosis than non-Aboriginal Australians.[2] A number of inter-related factors contribute to this pattern including death from co-morbidities, high exposure to risk factors, a lower cancer detection rate linked to higher co- morbidities, and lower number of deaths attributed to lung cancers for Aboriginal persons aged 60–70 years. There is minimal information available on survival rates for Aboriginal Australians.[74] While the high mortality rate can be linked to a high incidence, the review revealed other explanations such as spiritual and cultural beliefs, barriers to diagnosis, management and treatment such as distance, low socioeconomic status and language. As mentioned above, the quality of the Aboriginal data are not consistent. Therefore this inconsistency must be taken into consideration when examining statistical data. Further, lower detection and early deaths may eliminate people who would have developed the disease later and those where the cancer has a long latency period. Other possible factors include under-investigation by health practitioners of the Aboriginal population over 60 years.[74]

Literature review and national consultation on factors impacting on lung cancer outcomes | 19 Overall, the literature shows clear disparities in diagnosis and treatment across a number of measures and aspects. Aboriginal Australians were more likely to receive delayed or incomplete treatment, had lower admission rates and an overall later diagnosis of lung cancer. Aboriginal Australians were also less likely to use private medical services, to be recommended for curative treatment and to have treatment interstate. Furthermore, there is generally low participation in cancer screening programs by Aboriginal Australians.[18, 28, 76–93] Rural and remote living has a well documented negative correlation with access and outcomes for patients diagnosed with lung cancer.[76] Pre-diagnostic barriers include: lack of knowledge of risk;[18] reluctance to seek health care; late presentation;[28, 89] and high rates of comorbidities.[76] Recommendations to improve rural/remote access and health knowledge include: increased dissemination of cancer prevention knowledge and practices [78, 89, 90] to improve patient knowledge of risk and encouragement of positive health seeking behaviours. Post-diagnosis barriers include: distance to ‘local’ GP;[18, 82, 91] limitations to treatment options due to late stage diagnosis and/or comorbidity;[80, 89] individual socio-economic status (SES) and/or private health insurance status;[77, 91, 92] shortages of healthcare providers available rurally;[83] currency of treatments and facilities;[86, 90] and limited access to psychological/bereavement services.[88] With only 18.4, 13.4, 4.7 outer regional, remote, and very remote allied health professionals, respectively, per 10,000 capita,[18, 84] an increase in rural/remote health professionals is recognised as necessary to improve services for lung cancer rural/remote patients, however the availability of a MDT is suggested to be most beneficial for improving patient outcomes.[91] A suggested technique was the use of telemedicine,[78, 80] which has the potential to attenuate the effects of distance, socioeconomic differentials, health professional shortages, and barriers to early diagnosis. Poorer outcomes for rural lung cancer patients is well documented in the literature,[78, 79] with lung cancer said to be responsible for 12% of the excess new cases of cancer in all regional areas (excess is defined here as the difference between the number of observed new cases and the number of new cases expected if Major Cities age-specific rates were applied to the population in each area). [94] Barriers faced by those living in rural and remote areas include: distance to care;[18, 91] longer waiting times;[92] and poor coordination of follow up processes with specialists.[28, 91] All of these impact on patient treatment and compliance.[86] Some benefits of an awareness of these factors include: continuity of care from primary to palliative, and increasing the awareness of issues facing rural communities.[91] Mortality rates are highest in patients living remotely,[79] with lung cancer being the second highest cause of premature death in men [82, 83] with a low five year survival rate.[85] Lung cancer is the third highest avoidable mortality,[85, 87] with rates found to be higher in rural areas compared to metropolitan areas, and higher still in remote Local Government Areas.[40] Table 4 shows the difference in one year and five year survival for lung cancer in five regional categories between 1997 and 2004. There were differences in survival between major cities and outer regional areas for both one year and five year survival. Differences in relative survival were even more pronounced between major cities and remote and very remote areas for both one year and five year survival.[40]

20 | Report on lung cancer in Australia Table 4: Relative survival by region, lung cancer diagnoses in 1997–2004

Major cities (%) Inner region (%) Outer region (%) Remote and very remote (%) 95% CI 95%CI 95%CI 95%CI One year 36.5 (36.1–37.0) 34.2 (33.4–34.9) 31.2 (30.1–32.3) 27.6 (25.2–30.1) Five year 12.4(12.1–12.8) 11.3(10.7–11.8) 8.7(8.0–9.4) 9.9(8.2–11.7)

Source: Australian Institute of Health and Welfare, Cancer Australia and Australasian Association of Cancer Registries. Cancer Survival and Prevalence in Australia: Cancers diagnosed 1982–2004. Cancer Series, 2008 [72]

5.11.1 Priority areas for guidance material In the interviews, participants stated that although guidelines existed, there was limited emphasis on the investigations leading to an early diagnosis. One GP suggested that strategies for monitoring patients at high risk were not apparent and in undertaking case finding for chronic conditions that they were ‘not really thinking about lung cancer’ (EP GP) and noted that this was something that they would be more aware of in future consultations.

5.11.2 Patient, provider and systems issues Based upon expert consultations, specialists identified that comorbidites and age were factors considered in appraising the risks associated with treatment, although all general practitioners interviewed indicated that they would refer to a specialist if a lesion was identified. Expert participants disclosed that some health professionals were not aware of best practice lung cancer management and did not know that symptoms could be relieved by radiotherapy and chemotherapy. Generally, it was considered that the most common reason for patients deciding not to pursue treatment was the need to travel long distances for treatment and the associated costs and burden to family members. In general, follow up protocols for people at risk of lung cancer who have ongoing symptoms but normal chest X-Rays were not identified as being available.

5.12 Summary of review of evidence and consultation methods The different methods used as part of this review have allowed a multifaceted view of the issues impacting on variations in lung cancer care. The sampling method, using an online survey, has allowed for a scoping of national issues, across the public and private sector, and identified recommendations for policy, practice and research. Recommendations are made within the scope of Cancer Australia’s leadership role in cancer control.

5.13 Recommendations for guidance material and further research Several informants thought that increasing resources would decrease variations in outcomes. The benefits could range from increasing community engagement to increased investment in treatments and better coordination of care. The absence of the capacity to monitor data from diagnosis to survival outcomes is seen as a challenge to optimal management of lung cancer in Australia.[95]

Literature review and national consultation on factors impacting on lung cancer outcomes | 21 5.13.1 Clinical guidance material Based on the consultations, the review of existing Australian data, and the literature review, clinical guidance material would support improvements in lung cancer outcomes. Guidance material could include: • Evidence-based guidelines for risk assessment, diagnosis and treatment of lung cancer • Recommendations for monitoring people with symptoms and at high risk of lung cancer in general practice • Strategies to enhance the recognition of patients who warrant a chest X-ray or referral for definitive diagnosis • Models of care delivery which would decrease variations in lung cancer treatment and how these would best be implemented • Information regarding the composition of MDTs and mechanisms of access • A metric for evaluating the quality of lung cancer care to facilitate benchmarking. Health professionals could be prompted to consider lung cancer in people with other chronic medical conditions, in view of the strong association between lung cancer and conditions such as COPD, CHF and CHD. This may increase the number of people who are diagnosed at an earlier stage.[96]

5.13.2 Research Expert participants identified bench top research, the development of more sensitive tumour markers and more effective treatments as having greater scope to raise the profile of lung cancer research. In the absence of a screening test, methods of risk assessment, monitoring and follow-up are critical. Many of the strategies to decrease variations in lung cancer treatment identified in this research relate to workforce issues, access to information and clinical expertise and the passage of patients through the health care system. Further investments in the following may improve outcomes: • Mechanisms to promote best practice clinical decision making in primary care • Self-management strategies for individuals at high risk of lung cancer • Evaluation of clinical networks (method of delivery, coordination and evaluating care in a defined geographical setting) in facilitating treatment • Assessments of workforce requirements in lung cancer care.

5.14 Conclusions This study has identified that, in the opinion of experts, the most significant factors contributing to adverse outcomes in lung cancer in Australia are late presentation and delays in entering specialist care. Other barriers identified include distance from tertiary care settings and the interface between the public and private sector. Strategies to monitor individuals at high risk of lung cancer and streamlining processes to facilitate efficient and timely referral for diagnosis, staging and treatment are likely to achieve benefits. Providing information to patients and their families about what to expect when diagnosed with lung cancer and supporting patients during the period of diagnosis and treatment may promote adherence to treatment recommendations and diminish distress.

22 | Report on lung cancer in Australia REFERENCES [1] Australian Institute of Health and Welfare. Australia’s Health 2010. Canberra: AIHW; 2010. [2] Australian Bureau of Statistics. Causes of Death. Australia. 2008. Canberra: ABS; 2010. [3] Youlden DR, Cramb SM, Baade PD. Current status of lung cancer in Queensland: 1982 to 2004. Brisbane, Queensland: Viertel Centre for Research in Cancer Control, The Cancer Council Queensland; 2007. [4] Jemal A, Chu KC, Tarone RE. Recent trends in lung cancer mortality in the United States. JNCI Journal of the National Cancer Institute. 2001;93(4):277. [5] Janssen-Heijnen MLG, Coebergh JWW. Trends in incidence and prognosis of the histological subtypes of lung cancer in North America, Australia, New Zealand and Europe. Lung Cancer. 2001;31(2–3):123–37. [6] Australian Bureau of Statistics. National Aboriginal and Torres Strait Islander health survey, 2004–05. 2006 [cited 2010 25 February]; Available from: http://www.abs.gov.au/ausstats/[email protected]/Lookup/ C36E019CD56EDE1FCA256C76007A9D36 [7] Bolton WD, Rice DC, Correa AM, Hofstetter W, Komaki R, Mehran R, et al. Influence of Age on Choice of Therapy and Surgical Outcomes in Patients with Non-Small Cell Lung Cancer. The American Surgeon. 2009;75(7):598–604. [8] Cornfield J, Haenszel W, Hammond EC, Lilienfeld AM, Shimkin MB, Wynder EL. Smoking and lung cancer: recent evidence and a discussion of some questions. International Journal of Epidemiology. 2009. [9] Stämpfli MR, Anderson GP. How cigarette smoke skews immune responses to promote infection, lung disease and cancer. Nature Reviews Immunology. 2009;9(5):377–84. [10] Yasufuku K, Nakajima T, Motoori K, Sekine Y, Shibuya K, Hiroshima K, et al. Comparison of Endobronchial Ultrasound, Positron Emission Tomography, and CT for Lymph Node Staging of Lung Cancer. Chest. 2006;130(3):710. [11] Coory M, Gkolia P, Yang IA, Bowman RV, Fong KM. Systematic review of multidisciplinary teams in the management of lung cancer. Lung Cancer. 2008;60(1):14–21. [12] Yang IA, Fong KM, Zimmerman PV, Holgate ST, Holloway JW. Genetic susceptibility to the respiratory effects of air pollution. British Medical Journal. 2009;85(1006):428. [13] Jiwa M, Maujean E, Spilsbury K, Threlfal T. The trajectory of lung cancer patients in Western Australia— A data linkage study: Still a grim tale. Lung Cancer. 2010. [14] Conrad DH, Goyette J, Thomas PS. Proteomics as a method for early detection of cancer: a review of proteomics, exhaled breath condensate, and lung cancer screening. Journal of General Internal Medicine. 2008;23:78–84. [15] Brenner DJ, Hall EJ. Computed tomography—an increasing source of radiation exposure. The New England Journal of Medicine. 2007;357(22):2277. [16] Pastorino U. Lung cancer screening. British Journal of Cancer. 2010;102:1681–6.

Literature review and national consultation on factors impacting on lung cancer outcomes | 23 [17] Manser R, Dalton A, Carter R, Byrnes G, Elwood M, Campbell DA. Cost-effectiveness analysis of screening for lung cancer with low dose spiral CT (computed tomography) in the Australian setting. Lung Cancer. 2005;48(2):171–85. [18] Hall S, Holman CDAJ, Threlfall T, Sheiner H, Phillips M, Katriss P, et al. Lung cancer: An exploration of patient and general practitioner perspectives on the realities of care in rural Western Australia. Australian Journal of Rural Health. 2008;16(6):355–62. [19] Gross CP, Smith BD, Wolf E, Andersen M. Racial disparities in cancer therapy: Did the gap narrow between 1992 and 2002? Cancer. 2008;112(4):900–8. [20] Grose DB, Devereux G, Jones RD, Sharma D, Selby C, Docherty K, et al. Variation in practice, comorbidity, and treatment in newly diagnosed lung cancer patients. J Clin Oncol (Meeting Abstracts). 2010 May 20, 2010;28(15 suppl):e12056-. [21] Ngeow J, Leong SS, Gao F, Toh CK, Lim WT, Tan EH, et al. Impact of comorbidities on clinical outcomes in non-small cell lung cancer patients who are elderly and/or have poor performance status. Critical Reviews in Oncology/Hematology. In press. [22] Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health Affairs. 2001;20(6):64. [23] Shahid S, Finn L, Bessarab D, Thompson S. Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Services Research. 2009;9(1):132. [24] Sanders SL, Bantum EO, Owen JE, Thornton AA, Stanton AL. Supportive care needs in patients with lung cancer. Psycho-Oncology. 2010;19(5):480–9. [25] Krishnasamy M, Ugalde A, Carey M, Duffy M, Dryden T. Patient expectations and preferences for follow-up after treatment for lung cancer: A pilot study. European Journal of Oncology Nursing. In press. [26] Shahid S, Thompson SC. An overview of cancer and beliefs about the disease in Indigenous people of Australia, Canada, New Zealand and the US. Australian and New Zealand Journal of Public Health. 2009;33(2):109–18. [27] Cykert S, Dilworth-Anderson P, Monroe MH, Walker P, McGuire FR, Corbie-Smith G, et al. Factors associated with decisions to undergo surgery among patients with newly diagnosed early-stage lung cancer. JAMA. 2010;303(23):2368. [28] Jiwa M, Halkett G, Aoun S, Arnet H, Smith M, Pilkington M, et al. Factors influencing the speed of cancer diagnosis in rural Western Australia: a General Practice perspective. BMC Family Practice. 2007;8(1):27. [29] National Health and Hospitals Reform Commission. A Healthier Future For All Australians—Final Report: National Health and Hospitals Reform Commission; June 2009. [30] Koh HK, Oppenheimer SC, Massin-Short SB, Emmons KM, Geller AC, Viswanath K. Translating Research Evidence Into Practice to Reduce Health Disparities: A Social Determinants Approach. American Journal of Public Health. 2010;100(S1):S72.

24 | Report on lung cancer in Australia [31] Partridge E, Fouad M. Community-driven approaches for reducing health disparities in cancer. JAMA. 2010;303(11):1090. [32] George A. Quantitative and qualitative approaches to content analysis. The Content Analysis Reader. 2008:144. [33] Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Social Science and Medicine. 2000;51(7):1087–110. [34] Kilbourne AM, Switzer G, Hyman K, Crowley-Matoka M, Fine MJ. Advancing health disparities research within the health care system: a conceptual framework. American Journal of Public Health. 2006;96(12):2113. [35] World Health Organisation. Cancer Factsheet. Geneva: WHO; 2009 February 2009 [36] Australian Institute of Health and Welfare. Most frequently occuring cancers. Canberra: AIHW 2005. [37] Australian Institute of Health and Welfare. Latest mortality data: Overview. 2006 [cited 2010 18 February]; Available from: http://www.aihw.gov.au/mortality/data/current_data.cfm [38] McDermid I, Australian Institute of Health and Welfare, Australasian Association of Cancer Registries. Cancer incidence projections Australia 2002 to 2011. Canberra: Australian Institute of Health and Welfare 2005. [39] Tod AM, Craven J, Allmark P. Diagnostic delay in lung cancer: a qualitative study. Journal of Advanced Nursing. 2008;61(3, Feb):336–43. [40] Australian Institute of Health and Welfare, Cancer Australia and Australasian Association of Cancer Registries. Cancer Survival and Prevalence in Australia: Cancers diagnosed 1982–2004. Canberra: AIHW; 2008. [41] Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: Qualitative study. British Medical Journal. 2004;328(7454):1470–3. [42] Smith SM, Campbell NC, MacLeod U, Lee AJ, Raja A, Wyke S, et al. Factors contributing to the time taken to consult with symptoms of lung cancer: a cross-sectional study. Thorax. 2009;64(6):523. [43] Khuri FR, Roman J. From Nihilism to Individualism: The Evolution of Lung Cancer Therapy. American Journal of Respiratory and Critical Care Medicine. 2008;177(12):1299. [44] Asmis TR, Ding K, Seymour L, Shepherd FA, Leighl NB, Winton TL, et al. Age and comorbidity as independent prognostic factors in the treatment of non-small cell lung cancer: A review of National Cancer Institute of Canada Clinical Trials Group Trials. Journal of Clinical Oncology. 2008;26(1):54. [45] Gershon AS, Wang C, Wilton AS, Raut R, To T. Trends in Chronic Obstructive Pulmonary Disease Prevalence, Incidence, and Mortality in Ontario, Canada, 1996 to 2007: A Population-Based Study. Archives of internal medicine. 2010;170(6):560. [46] Navaratnam S, Kliewer EV, Butler J, Demers AA, Musto G, Badiani K. Population-based patterns and cost of management of metastatic non-small cell lung cancer after completion of chemotherapy until death. Lung Cancer. In Press. [47] Yang SC. Racial Disparities in Lung Cancer Care: The Unresolved Problem. Archives of Surgery. 2009;144(2):193.

Literature review and national consultation on factors impacting on lung cancer outcomes | 25 [48] Jackson GL, Powell AA, Ordin DL, Schlosser JE, Murawsky J, Hersh J, et al. Developing and Sustaining Quality Improvement Partnerships in the VA: The Colorectal Cancer Care Collaborative. Journal of General Internal Medicine. 2010;25:38–43. [49] Staples M, Elwood M, St John J, Howes F, Pedersen K. Perceived impact on clinical practice and logistical issues in clinical management surveys of cancer: Australian experience. Quality and Safety in Health Care. 2009;18(3):195. [50] National Health and Medical Research Council. The Cancer Dataset. NHMRC 2010. [51] Fong K, Bowman R, Abraham R, Windsor M, Pratt G, Fielding D, et al. Queensland Integrated Lung Cancer Outcomes Project (QILCOP): 2000–2003. 2010: Elsevier Science; 2010. p. S201. [52] Walsh JM, Harrison JD, Young JM, Butow PN, Solomon MJ, Masya L. What are the current barriers to effective cancer care coordination? A qualitative study. BMC Health Services Research. 2010;10(1):132. [53] Vinod SK, Barton MB. Actual versus optimal utilization of radiotherapy in lung cancer: Where is the shortfall? Asia–Pacific Journal of Clinical Oncology.2007; 3(1):30–6. [54] Vinod SK, O’Connell DL, Simonella L, Delaney GP, Boyer M, Peters M, et al. Gaps in optimal care for lung cancer. Journal of Thoracic Oncology. 2008;3(8):871–9. [55] Vinod SK, Simonella L, Goldsbury D, Delaney GP, Armstrong B, O’Connell DL. Underutilization of radiotherapy for lung cancer in New South Wales, Australia. Cancer. 2010;116(3):686–94. [56] Duvalko KM, Sherar M, Sawka C. Creating a system for performance improvement in cancer care: Cancer Care Ontario’s Clinical Governance Framework. Cancer control: Journal of the Moffitt Cancer Center. 2009;16(4):293. [57] Dahele M, Ung Y, Meharchand J, Shulman H, Zeldin R, Behzadi A, et al. Integrating regional and community lung cancer services to improve patient care. Current Oncology. 2007;14(6):234. [58] Raab SS, Grzybicki DM. Quality in cancer diagnosis. CA: A Cancer Journal for Clinicians. 60(3):139. [59] Hart CL, Hole DJ, Gillis CR, Smith GD, Watt G, Hawthorne VM. Social class differences in lung cancer mortality: risk factor explanations using two Scottish cohort studies. International Journal of Epidemiology. 2001;30(2):268. [60] Govindan R, Page N, Morgensztern D, Read W, Tierney R, Vlahiotis A, et al. Changing epidemiology of small cell lung cancer in the United States over the last 30 years: analysis of the surveillance, epidemiologic, and end results database. Journal of Clinical Oncology. 2006;24(28):4539. [61] Socinski MA, Crowell R, Hensing TE, Langer CJ, Lilenbaum R, Sandler AB, et al. Treatment of Non-Small Cell Lung Cancer, Stage IV*. CHEST. 2007;132(3 suppl):277S. [62] Silvestri GA, Handy J, Lackland D, Corley E, Reed CE. Specialists achieve better outcomes than generalists for lung cancer surgery. CHEST. 1998;114(3):675. [63] Earle CC, Neumann PJ, Gelber RD, Weinstein MC, Weeks JC. Impact of referral patterns on the use of chemotherapy for lung cancer. Journal of clinical oncology. 2002;20(7):1786.

26 | Report on lung cancer in Australia [64] Earle CC, Venditti LN, Neumann PJ, Gelber RD, Weinstein MC, Potosky AL, et al. Who gets chemotherapy for metastatic lung cancer? CHEST-CHICAGO. 2000;117(5):1239–46. [65] Christmas T, Findlay M. Lung cancer treatment in New Zealand: physicians’ attitudes. Journal of the New Zealand Medical Association. 2004;117:1196. [66] Shavers VL, Brown ML. Racial and Ethnic Disparities in the Receipt of Cancer Treatment. J Natl Cancer Inst. 2002 March 6, 2002;94(5):334–57. [67] Yang R, Cheung MC, Byrne MM, Huang Y, Nguyen D, Lally BE, et al. Do racial or socioeconomic disparities exist in lung cancer treatment? Cancer. 2010;116(10):2437–47. [68] Sanson-Fisher R, Carey M, Mackenzie L, Hill D, Campbell S, Turner D. Reducing inequities in cancer care. Cancer. 2009;115(16):3597–605. [69] Oxman AD, Thomson MA, Davis DA, Haynes RB. No magic bullets: a systematic review of 102 trials of interventions to improve professional practice. CMAJ: Canadian Medical Association Journal. 1995;153(10):1423. [70] Devbhandari MP, Joshi V, Barber P, Krysiak P, Shah R, Jones MT. Active treatment rates for lung cancer in south Manchester: Are we doing enough? Interactive CardioVascular and Thoracic Surgery. 2010. [71] Baig IM. Fighting lung cancer in the developed world—A model of care in a UK Hospital. JPMA The journal of the Pakistan Medical Association. 2010;60(2):93–7. [72] Cancer Australia. A National Cancer Data Strategy for Australia. Canberra: Cancer Australia; 2008. [73] Condon JR, Barnes T, Armstrong BK, Selva-Nayagam S, Elwood JM. Stage at diagnosis and cancer survival for Indigenous Australians in the Northern Territory. Medical Journal of Australia. 2005;182(6):277–80. [74] Threlfall TJ, Thompson JR, Western Australian Cancer Registry, Department of Health Western Australia. Cancer incidence and mortality in Western Australia, 2005. Perth: Department of Health, Western Australia 2007. [75] Condon JR, Armstrong BK, Barnes T, Zhao Y. Cancer incidence and survival for indigenous Australians in the Northern Territory. Australian & New Zealand Journal of Public Health. 2005 Apr;29(2):123–8. [76] Hancock L, Sanson-Fisher R, Redman S, Reid A, Tripodi T. Knowledge of cancer risk reduction practices in rural towns of New South Wales. Australian and New Zealand Journal of Public Health. 1996;20(5):529–37. [77] Australian Institute of Health and Welfare. Health in rural and remote Australia. Canberra: AIHW; 1998. [78] Campbell NC, Elliott AM, Sharp L, Ritchie LD, Cassidy J, Little J. Rural and urban differences in stage at diagnosis of colorectal and lung cancers. British Journal of Cancer. 2001;84(7):910. [79] Mathers CD, Vos ET, Stevenson CE, Begg SJ. The burden of disease and injury in Australia. Bulletin of the World Health Organization. 2001;79:1076–84. [80] Hall S, Holman CD, Sheiner H, Hendrie D. The influence of socio-economic and locational disadvantage on survival after a diagnosis of lung or breast cancer in Western Australia. Journal of Health Services Research & Policy. 2004 10/02/;9:S2:10–6.

Literature review and national consultation on factors impacting on lung cancer outcomes | 27 [81] Hall S, Holman CDJ, Sheiner H. The influence of socio-economic and locational disadvantage on patterns of surgical care for lung cancer in Western Australia 1982–2001. Australian Health Review. 2004 05;27(2):68–79. [82] Jong KE. Remoteness of residence and survival from cancer in New South Wales. Medical Journal of Australia. 2004;180(12):618. [83] Jong KE. Rural inequalities in cancer care and outcome. Medical Journal of Australia. 2005;182(1):13–4. [84] Conron M, Phuah S, Steinfort D, Dabscheck E, Wright G, Hart D. Analysis of multidisciplinary lung cancer practice. Internal Medicine Journal. 2007;37(1):18–25. [85] Piers LS, Carson NJ, Brown K, Ansari Z. Avoidable mortality in Victoria between 1979 and 2001. Australian and New Zealand Journal of Public Health. 2007;31(1):5–12. [86] White K. Rural palliative care: exploration of the pivotal role of primary healthcare providers. Cancer forum. 2007;31(1):22. [87] Daly J, Lumley J. The role of a public health journal in securing the health of the public. Australian and New Zealand Journal of Public Health. 2008;32(1):3–4. [88] Keane S, Smith TN, Lincoln M, Wagner SR, Lowe SE. The rural allied health workforce study (RAHWS): background, rationale and questionnaire development. Rural and remote health. 2008;8(4):1132. [89] Yu XQ. Assessing the impact of socio-economic status on cancer survival in New South Wales, Australia 1996–2001. Cancer Causes & Control. 2008;19(10):1383. [90] Lee SF, O’Connor MM, Chapman Y, Hamilton V, Francis K. A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia. Rural & Remote Health. 2009 07;9(3):13p. [91] Sabesan S, Piliouras P. Disparity in cancer survival between urban and rural patients—how can clinicians help reduce it? Rural & Remote Health. 2009;9:1146. [92] Wakerman J, Humphreys J, Wells R, Kuipers P, Jones J, Entwistle P, et al. Features of effective primary health care models in rural and remote Australia: a case-study analysis. Medical Journal of Australia. 2009;191(2):88–91. [93] Drury VBP, Inma CP. Exploring Patient Experiences of Cancer Services in Regional Australia. SO—Cancer Nursing January/February 2010;33(1):E25–E31. 2010. [94] Australian Institute of Health and Welfare. Rural, regional and remote health: indicators of health status and determinants of health. Canberra: AIHW; 2008. [95] Hayman NE, White NE, Spurling GK. Improving Indigenous patients’ access to mainstream health services: the Inala experience. Medical Journal of Australia. 2009;190(10):604–6. [96] Deeks JJ. Systematic reviews in health care: Systematic reviews of evaluations of diagnostic and screening tests. British Medical Journal. 2001;323(7305):157.

28 | Report on lung cancer in Australia APPENDIX 1: LITERATURE REVIEW SEARCH STRATEGIES A range of strategies was incorporated to ensure all relevant and applicable data was obtained. Over a five month period both published and unpublished literature were reviewed. • Database searches using key words. All searches were documented by date, key words and database(s) searched. • Journal hand searching for example in journals such as Lung Cancer and Lung and Chest. • Internet and website hand searching was performed to obtain national and international guidelines, reports and statistics from both government and non-government agencies, organisations and institutes. For example searching State and Territory cancer registries and Cancer Councils, Australian Institute of Health and Welfare (AIHW), USA National Cancer Institute (NCI), UK National Institute for Health and Clinical Excellence (NICE) and National Cancer Statistics Clearing House. • Hand searched registries such as the Peter MacCallum Cancer Centre Publication Registry and the Cochrane Library. • Strategies to obtain grey literature included emailing key informants and asking experts during consultations to obtain any unpublished reports, data and/or papers.

Databases searched The databases searched included; ABI / Inform, AMED, Australian Indigenous HealthInfoNet, CINAHL, Cochrane Library, DRUG, Embase, Google Scholar, PsycInfo, Medline/PubMed, Web of Knowledge (searches in Web of Knowledge includes coverage of Current Contents Connect, Global Health, Medline, Science Citation Index, Social Sciences Index and the Web of Science), SCOPUS, RURAL, APAIS-ATSIS, AMED, Proquest and Health Insite.

Inclusion/Exclusion This project included studies from January 1995 to June 2010. Given the broad range of issues covered by this project a wide variety of studies were reviewed, including; quantitative, qualitative, descriptive, literature reviews and mixed methods. The studies retrieved during the literature search were reviewed for relevance against the scope of the review. For areas where few studies have been conducted published expert opinions were examined. Studies and data on mesothelioma were excluded from this review.

Literature review and national consultation on factors impacting on lung cancer outcomes | 29 APPENDIX 2: EXISTING CLINICAL GUIDELINES

Table A1: Guidance Materials

Guidance Material Organisation Country Year Assessment and Management of Lung Cancer Evidence based guidelines: The Cancer Council of Australia Australia 2005 A guide for General Practice Clinical Practice Guidelines for the Prevention, Diagnosis and The Cancer Council of Australia Australia 2004 Management of Lung Cancer Smoking Cessation: Guidelines for Australian General Practice The Cancer Council of Australia Australia 2004 First Line Systemic Chemotherapy in the Treatment of Advanced Cancer Care Ontario Canada 2010 Non-Small Cell Lung Cancer 18-Fluorodeoxyglucose Positron Emission Tomography in the Cancer Care Ontario Canada 2007 Diagnosis and Staging of Lung Cancer Postoperative Adjuvant Chemotherapy in Completely Resected Cancer Care Ontario Canada 2007 Non-Small Cell Lung Cancer: Guidance for Nurses Chemotherapy for Relapsed Small Cell Lung Cancer Cancer Care Ontario Canada 2006 Management of Unresected Stage III Non-Small Cell Lung Cancer Cancer Care Ontario Canada 2006 Postoperative Adjuvant Chemotherapy, with or without Radiotherapy, Cancer Care Ontario Canada 2006 in Completely Resected Non-Small Cell Lung Cancer Second line or Subsequent Systemic Therapy for Recurrent or Cancer Care Ontario Canada 2006 Progressive Non-Small Cell Lung Cancer Use of the Epidermal Growth Factor Receptor Inhibitors, Gefitinib (Iressa) Cancer Care Ontario Canada 2006 and Erlotinib (Tarceva), in the Treatment of Non-Small Cell Lung Cancer Postoperative Adjuvant Radiation Therapy in Stage II or IIIA Completely Cancer Care Ontario Canada 2005 Resected Non-Small Cell Lung Cancer The Role of High Dose Rate Brachytherapy in the Palliation of Patients with Cancer Care Ontario Canada 2005 Non-Small Cell Lung Cancer The Role of Photodynamic Therapy (PDT) in Patients with Non-Small Cell Cancer Care Ontario Canada 2005 Lung Cancer Prophylactic Cranial Irradiation in Small Cell Lung Cancer Cancer Care Ontario Canada 2003 The Role of Combination Chemotherapy in the Initial Management of Cancer Care Ontario Canada 2003 Limited-Stage Small Cell Lung Cancer The Role of Thoracic Radiotherapy as an Adjunct to Standard Cancer Care Ontario Canada 2003 Chemotherapy in Limited-Stage Small Cell Lung Cancer Altered Fractionation of Radical Radiation Therapy in the Management of Cancer Care Ontario Canada 2002 Unresectable Non-Small Cell Lung Cancer Use of Preoperative Chemotherapy with or without Postoperative Cancer Care Ontario Canada 2002 Radiotherapy in Technically Resectable Stage IIIA Non-Small Cell Lung Cancer

30 | Report on lung cancer in Australia Guidance Material Organisation Country Year Non-small cell lung cancer: ESMO Clinical Recommendations European Society for Medical Europe 2009 for diagnosis, treatment and follow-up Oncology (ESMO) Small cell lung cancer: ESMO Clinical Recommendations for diagnosis, European Society for Medical Europe 2009 treatment and follow-up Oncology (ESMO) Standards, options and recommendations (SOR) for the perioperative French National Federation France 2007 treatment of patients with resectable non-small cell lung cancer of Cancer Centers (FNCLCC) Management of patients with lung cancer. A national clinical guideline Scottish Intercollegiate Scotland 2005 Guidelines Network Pemetrexed for the first-line treatment of non-small cell lung cancer National Institute for Health United 2009 (TA181) and Clinical Excellence (NICE) Kingdom Control of pain in adults with cancer (106) Scottish Intercollegiate United 2008 Guidelines Network (SIGN) Kingdom Erlotinib for the treatment of non-small cell lung cancer National Institute for Health United 2008 and Clinical Excellence (NICE) Kingdom Pemetrexed for the treatment of non-small cell lung cancer (TA124) National Institute for Health United 2007 and Clinical Excellence (NICE) Kingdom Lung Cancer; The diagnosis and treatment of lung cancer National Institute for Health United 2005 and Clinical Excellence (NICE) Kingdom Referral guidelines for suspected cancer in adults and children National Collaborating Centre for United 2005 Primary Care Kingdom American Society of Clinical Oncology Clinical Practice Guideline Update on American Society of Clinical United States 2009 Chemotherapy for Stage IV Non-Small Cell Lung Cancer Oncology Lung Cancer 2009 Treatment Guidelines Providence Health & Services, United States 2009 Portland, Oregan

NCCN Clinical Practice Guidelines in Oncology Non-Small Cell Lung Cancer National Comprehensive Cancer United States 2009 Network (NCCN) ACR Appropriateness Criteria nonsurgical treatment for non-small cell lung American College of Radiology United States 2008 cancer: poor performance status or palliative intent Clinical Practice Guideline Update: Use of Chemotherapy and Radiation American Society of Clinical United States 2008 Therapy Protectants Oncology Guidelines for Treatment of Cancer: Small Cell Lung Cancer National Comprehensive United States 2008 Cancer Network (NCCN) Guidelines for Treatment of Cancer: Non-Small Cell Lung Cancer National Comprehensive United States 2008 Cancer Network (NCCN) Bronchial intraepithelial neoplasia/early central airways lung cancer: American College of United States 2007 ACCP evidence-based clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) Bronchioloalveolar lung cancer: ACCP evidence-based clinical practice American College of United States 2007 guidelines (2nd Ed) Chest Physicians (ACCP)

Literature review and national consultation on factors impacting on lung cancer outcomes | 31 Guidance Material Organisation Country Year Chronic cough due to lung tumors: ACCP evidence-based clinical practice American College of United States 2007 guidelines (2nd Ed) Chest Physicians (ACCP) Complementary therapies and integrative oncology in lung cancer: American College of United States 2007 ACCP evidence-based clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) Diagnosis and Management of Lung Cancer: ACCP Evidence-Based American College of United States 2007 Clinical Practice Guidelines (2nd Ed) Chest Physicians (ACCP) Diagnostic surgical pathology in lung cancer: ACCP evidence-based clinical American College of United States 2007 practice guidelines (2nd Ed) Chest Physicians (ACCP) Evaluation of patients with pulmonary nodules: when is it lung cancer?: American College of United States 2007 ACCP evidence-based clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) Follow-up and surveillance of the lung cancer patient following curative- American College of United States 2007 intent therapy: ACCP evidence-based clinical practice guideline (2nd Ed) Chest Physicians (ACCP) Initial diagnosis of lung cancer: ACCP evidence-based clinical practice American College of United States 2007 guidelines (2nd Ed) Chest Physicians (ACCP) Initial evaluation of the patient with lung cancer: symptoms, signs, American College of United States 2007 laboratory tests, and paraneoplastic syndromes: ACCP evidenced-based Chest Physicians (ACCP) clinical practice guidelines Invasive mediastinal staging of lung cancer: ACCP evidence-based clinical American College of United States 2007 practice guidelines (2nd Ed) Chest Physicians (ACCP) Lung cancer chemoprevention: ACCP evidence-based clinical practice American College of United States 2007 guidelines (2nd Ed) Chest Physicians (ACCP) Management of small cell lung cancer: ACCP evidence-based clinical American College of United States 2007 practice guidelines (2nd Ed) Chest Physicians (ACCP) Palliative care consultation, quality-of-life measurements, and bereavement American College of United States 2007 for end-of-life care in patients with lung cancer: ACCP evidence-based Chest Physicians (ACCP) clinical practice guidelines (2nd Ed) Palliative Care in Lung Cancer American College of United States 2007 Chest Physicians (ACCP) Screening for lung cancer: ACCP evidence-based clinical practice American College of United States 2007 guidelines (2nd Ed) Chest Physicians (ACCP) Special treatment issues in lung cancer: ACCP evidence-based clinical American College of United States 2007 practice guidelines (2nd Ed) Chest Physicians (ACCP) The noninvasive staging of non-small cell lung cancer: ACCP evidenced- American College of United States 2007 based clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) The physiologic evaluation of patients with lung cancer being considered American College of United States 2007 for resectional surgery: ACCP evidenced-based clinical practice guidelines Chest Physicians (ACCP) (2nd Ed) Treatment of non-small cell lung cancer stage I and stage II: ACCP American College of United States 2007 evidence-based clinical practice guidelines (2nd Ed) Chest Physicians (ACCP)

32 | Report on lung cancer in Australia Guidance Material Organisation Country Year Treatment of non-small cell lung cancer stage IV: ACCP evidence-based American College of United States 2007 clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) Treatment of non-small cell lung cancer, stage IIIB: ACCP evidence-based American College of United States 2007 clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) Treatment of non-small cell lung cancer-stage IIIA: ACCP evidence-based American College of United States 2007 clinical practice guidelines (2nd Ed) Chest Physicians (ACCP) ACR Appropriateness Criteria induction and adjuvant therapy for N2 American College of Radiology United States 2006 non-small cell lung cancer ACR Appropriateness Criteria nonsurgical, aggressive therapy for American College of Radiology United States 2006 non-small cell lung cancer ACR Appropriateness Criteria postoperative adjuvant therapy in non-small American College of Radiology United States 2006 cell lung cancer

Literature review and national consultation on factors impacting on lung cancer outcomes | 33 APPENDIX 3: AUSTRALIAN DATA In Australia, there are only two census points where cancer data collection is mandatory, at diagnosis and at death.[1] Minimal data therefore exists on the duration of symptoms before diagnosis, monitoring of stage at diagnosis, treatment waiting times, quality of life after treatment, intermediate and long-term toxicities, and effects of new treatments and technologies.[1] This review identifies key trends based on the publicly available data from National and State Reports and Cancer Registries. In reviewing the lung cancer incidence and mortality rates it is useful to remember the generally poor survival of lung cancer patients which means that whilst the incidence rate is generally high prevalence may be significantly lower, and that there may also be a convergence of the incidence and mortality rates in the data.

Incidence In 2005 in Australia there were 9,182 new cases of lung cancer diagnosed. This accounted for 10.2% of all new cancers for males and 7.8% of all cancers for females.[2]1 After allowing for differences in age, males were twice as likely than females to be diagnosed with lung cancer and twice as likely to die from it. Lung cancer is ranked fourth for males and females in cancer incidence and lung cancer was the most common cause of mortality from cancer in Australia overall and in males and females separately. A key trend is the changes in rates across gender. Incidence and mortality rates are declining in males but increasing in females. These trends are represented in Figure A1. Figure A2, Table A3 and Table A4 demonstrates lung cancer incidence by State and Territory.

Figure A1: Trends in incidence rates for lung, bronchus and trachea (ICD10 C33–C34), Australia, 1982–2006

100 Male ASI rate 90 Female ASI rate 80 70 60 50 40

Cases per 100,000 30 20 10 0 1980 1985 1990 1995 2000 2005 2010

Source: AIHW Australian Cancer Incidence and Mortality (ACIM) books. Note: Age-standardised to the Australian Standard Population 2001. 1 Excluding non-melanocytic skin cancer.

34 | Report on lung cancer in Australia Figure A2: Average annual lung cancer incidence by State and Territory, 2001–2005

3000

2500

2000

1500 Number 1000

500

0

Vic Qld WA SA Tas NT NSW ACT

Source: Australian Institute of Health and Welfare. Cancer in Australia: an overview, 2008. Canberra: Australian Institute of Health and Welfare, 2007[2] using data from National Cancer Statistics Clearing House, AIHW.

Table A3: Average annual incidence of lung cancer, 2001–2005 (Lung, bronchus & trachea (ICD-10 C33–C34))

State NSW Vic Qld WA SA Tas ACT NT Aust Males 1858 1382 1085 537 473 169 50 37 5591 Females 1055 798 581 303 275 102 32 16 3161 Persons 2913 2180 1667 840 748 271 81 53 8752 Source: Australian Institute of Health and Welfare. Cancer in Australia: an overview, 2008. Canberra: Australian Institute of Health and Welfare, 2007[2] using data from National Cancer Statistics Clearing House, AIHW.

ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of trachea, bronchus and lung.

Table A4: Age standardised lung cancer incidence rates (Lung, bronchus & trachea (ICD-10 C33–C34)).

State NSW Vic Qld WA SA Tas ACT NT Aust Males 58.5 60.1 62.9 64.9 59.6 69.8 44.1 74.2 60.6 Females 28.1 28.5 29.8 31.0 28.6 35.7 22.4 31.2 28.9 Persons 41.6 42.4 45.0 46.1 42.0 50.5 31.8 53.6 43.0 Source: Australian Institute of Health and Welfare. Cancer in Australia: an overview, 2008. Canberra: Australian Institute of Health and Welfare, 2007[2] using data from National Cancer Statistics Clearing House, AIHW. ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of trachea, bronchus and lung.

Literature review and national consultation on factors impacting on lung cancer outcomes | 35 Mortality Of the 7,427 lung cancer deaths in Australia in 2005, 63.4% were males and 36.5% were females.[2] Lung cancer deaths accounted for 21.4% of all male cancer deaths and 15.9 per cent of all female cancer deaths in 2005,2 in addition lung cancer was the leading cancer death for both sexes.[2] Clear gender differences exist within lung cancer mortality. Mortality rates are consistently higher for males than females, except for females 40–44 years who have a higher rate than males in the same age group.[3] Figure A5 and Table A6 represent the improvements in mortality rates amongst men; however this has not been seen within the female population.

Figure A5: Trends in death rates for lung, bronchus and trachea (ICD10 C33–C34), Australia, 1968–2007

100 Male ASI rate 90 Female ASI rate 80 70 60 50 40

Deaths per 100,000 30 20 10 0 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010

Source: AIHW Australian Cancer Incidence and Mortality (ACIM) books. Note: Age-standardised to the Australian Standard Population 2001.

Table A6: Aged standardised mortality rate (Lung, bronchus & trachea (ICD-10 C33–C34))

1996 1998 2000 2002 2004 2006 Males 63.4 59.3 54.7 53.3 50.3 47.4 Females 22.1 20.7 22.2 23.5 22.2 22.7 Persons 40.0 37.5 36.4 36.6 34.6 36.6 Source: AIHW. GRIM (General Record of Incidence and Mortality): Lung Cancer (ICD-10 C33, 34). Canberra: AIHW, 2008[4] ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of trachea, bronchus and lung.

Survival In 1998–2004 lung cancer was one of the cancers with the lowest five-year relative survival at a level of only 12%.[5]3 As indicated in Table A7 five-year survival was higher for females than males.[5]

2 Excluding non-melanocytic skin cancer. 3 Excluding non-melanocytic skin cancer.

36 | Report on lung cancer in Australia Table A7: Trends in 5 year survival, diagnoses 1982–1986 to 1998–2004, (Lung, bronchus & trachea (ICD-10 C33–C34))

1982–1986 (%) 1987–1991 (%) 1992–1997 (%) 1998–2004 (%) Men 7.9 9.1 9.7 10.7 Women 10.5 10.8 12.6 14.0 Persons 8.5 9.5 10.6 11.8 Source: Australian Institute of Health and Welfare, Cancer Australia and Australasian Association of Cancer Registries. Cancer Survival and Prevalence in Australia: Cancers diagnosed 1982–2004. Cancer Series, 2008[5] ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of trachea, bronchus and lung. Five-year relative survival from lung cancers diagnosed in 1997–2004 was higher for persons in major cities (12.4%) compared with inner regional areas (11.3%), outer regional areas (8.7%) and remove/very remote areas (9.9%).[5] Not surprisingly the same pattern is seen for one year relative survival over the same period; major cities (36.5%), inner regional areas (34.2%), outer regional areas (31.2%) and remove/very remote areas (27.6%).[5] Lung cancer survival can also be affected by socioeconomic status, five-year relative survival from lung cancers diagnosed in 2000–2004 were significantly higher for persons living in areas belonging to the least disadvantaged socioeconomic status quintile (14% in the fifth quintile) compared with the three most disadvantaged quintiles (11% in the first, second and third quintiles).[5] The first quintile corresponds to areas with the lowest socioeconomic status and the fifth quintile corresponds to the highest.

Stage at diagnosis There is little publicly available information on the stage of lung cancer at diagnosis. Of those diagnosed with lung cancer in NSW 44% (1,128 people) had localised lung cancer at diagnosis, 23% (592 people) had regional spread at diagnosis, 12% (322 people) had distant metastases and 21% (520 people) had unknown spread at diagnosis.[6]

Lung cancer in the States and Territories Similar lung cancer trends are witnessed within all jurisdictions. Lung cancer is the leading cause of cancer mortality within all states with incidence and mortality rates higher within the male population.[3,7–12] However in the ACT and South Australia lung cancer is the second most common cancer death (following breast cancer) amongst women.[13–15] All states have also experienced a decrease in incidence and mortality rates amongst men, however an increase or little movement amongst women.[3,7–11,13,15,16]

Literature review and national consultation on factors impacting on lung cancer outcomes | 37 APPENDIX 4: SURVEY 1 AND SURVEY 2

38 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 39 40 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 41 42 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 43 44 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 45 46 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 47 48 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 49 50 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 51 52 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 53 54 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 55 56 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 57 58 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 59 60 | Report on lung cancer in Australia Literature review and national consultation on factors impacting on lung cancer outcomes | 61 APPENDIX 5: CONSULTATION ROUND 1 RESULTS

Section 1: Some information about you

Question 1.1: Please mark the professional description for your role

1.1 Participant Demographics: Professional Description Frequency Percent Academic Nurse—Palliative care 1 0.74 Advanced trainee general practice 1 0.74 Basic trainee GP 1 0.74 Cardiothoracic surgeon 4 2.94 Care coordinator 1 0.74 Clinical nurse consultant respiratory 1 0.74 Consumer 3 2.21 Exercise physiologist 1 0.74 General practitioner 25 18.38 General practitioner registrar 1 0.74 General radiologist 12 8.82 General surgeon 4 2.94 GP psychotherapist 1 0.74 Medical oncologist 14 10.29 Medical oncologist and palliative medicine physician 1 0.74 Nurse consultant 1 0.74 Nurse manager 1 0.74 Occupational therapist 1 0.74 Palliative care physician 7 5.15 Physiotherapist 1 0.74 Physiotherapy 1 0.74 Policy/management 2 1.47 Project co-ordinator 1 0.74 Psychologist 1 0.74 Public health practitioner 1 0.74 Radiation oncologist 12 8.82 Reg nurse counsellor 1 0.74 Registered nurse (general practice) 1 0.74 Registered nurse (hospital) 4 2.94 Research 4 2.94 Respiratory physician 22 16.18 Thoracic surgeon 3 2.21 Tobacco treatment specialist 1 0.74 Total 136 100.00

62 | Report on lung cancer in Australia Question 1.2: In which state or territory do you work principally?

1.2 Participant Demographics: State Frequency Percent Australian Capital Territory 2 1.5 New South Wales 53 38.7 Northern Territory 1 .7 Queensland 24 17.5 South Australia 9 6.6 Tasmania 5 3.6 Victoria 25 18.2 Western Australia 18 13.1 Total 137 100.0

Question 1.3: In what sector do you work primarily?

1.3 Participant Demographics: Primary Work Sector Frequency Percent Community 1 .7 Not answered 1 .7 Other 7 5.1 Primary Health care 1 .7 Private hospital 4 2.9 Private practice 44 32.1 Public and private 1 .7 Public hospital 35 25.5 Public practice 41 29.9 Research 1 .7 Research Institute 1 .7 Total 137 100.0

Question 1.4: Do you provide services in an outreach clinic from a metropolitan service?

1.4 Participant Demographics: Do you provide services in an Outreach clinic from a metropolitan service? Frequency Percent No 107 78.1 Not answered 2 1.5 Yes 28 20.4 Total 137 100.0

Literature review and national consultation on factors impacting on lung cancer outcomes | 63 Section 2: Awareness and emphasis on lung cancer in Australia

Question 2.1: Please rate your opinion on the following statements. There is also a section to provide comments relating to this item.

2.1 Statistical results Probablity of lung Evidence based Expert opinion Multi-disciplinary team

cancer as diagnosis guideline accessability accessability accessability N Valid 124 125 124 121 Missing 13 12 13 16 Mean 6.57 7.00 8.19 7.67 Median 7.00 8.00 9.00 8.00 Std. Deviation 2.296 2.366 1.910 2.417 Percentiles 25 5.00 5.00 7.00 6.00 50 7.00 8.00 9.00 8.00 75 8.00 9.00 10.00 10.00

Figure 2.1: Views on improving care 2.1 Open-ended Comments:

10 1 = Very low 9 10 = Very high 8 7 6 5 4 3

Mean level of agreement 2 1 0

Expert opinion accessability

Probablity of lung cancer as diagnosisEvidence based guideline accessability Multi-disciplinary team (MDT) accessability

1. Limited by rurality. 2. Fewer guidelines in general available in Australia compared to practice in UK. 3. The major problem is the identification rather than getting treatment once found. 4. This reflects my clinical practice. 5. Not involved in MultiD teams for lung cancer; don’t manage lung cancer directly. 6. The major problem is the identification rather than getting treatment once found.

64 | Report on lung cancer in Australia 7. Access to multidisiplinary teams can be difficult, especially in the private sector and in the future may also effect public facilities due to budget cuts. 8. We work in rehabilitation for respiratory and cancer patients and have referrals for both research and treament of symptoms such as pain, dyspnoea and fatigue as well as muscle wasting. Good support from nutrition and medical staff. All work together to support the patients. 9. As a radiologist the last 3 questions appear not relevant. 10. As a patient, it seems only luck of who your GP may send you to for Respiratory assistance. There are some Specialists who do not have good contact with MDT and do not actively push their patients into, fighting for a better Quality of Life, no matter how long people have to live. 11. Have ready access to tertiary referral centre. 12. In order to access MDT care planning a consumer needs to be aware of the importance of this approach—I suspect few consumers are aware how critical this element of care will be to their clinical outcomes. 13. The problem lies in insufficient resources to diagnose and stage lung cancer, which impacts on all of the other areas, regardless of expert input and MDT access. 14. Regular teleconference with metropolitan centre. 15. As my focus is lung cancer and I work in a very aware and research given group my opinions are biased towards a good opinion. 16. Lung cancer is a rare diagnosis in general practice. I don’t have the need to consult guidelines about it much at all. 17. I cannot comment as I do not treat lung cancer patients, I am a research psychologist. 18. I am answering these questions with the region in which I practise, not generally in Victoria, or Australia. 19. While I have access to MDTs at my specialist centre, in smaller hospitals this is an issue. 20. We have a local tertiary hospital with good multidisciplinary support. 21. Currently we have no thoracic surgeon in the public hospital, MDM only starting this month and with no surgical input. 22. Timeliness concerns for public patients access. 23. I do not treat or manage lung cancer patient. 24. These questions are hard to understand. The main issue is getting access to timely diagnosis. 25. I coordinate and chair the weekly thoracic oncology multidisciplinary meetings at my hospital. 26. Fewer guidelines in general available in Australia compared to practice in UK. 27. The major problem is the identification rather than getting treatment once found.

Literature review and national consultation on factors impacting on lung cancer outcomes | 65 Section 3: Investigation for lung cancer Question 3.1: Please provide your view on the level to which you are able to obtain access to diagnostic investigation and tests in your practice setting. You may not be directly responsible for ordering these tests but the level of access will impact on your capacity to manage Lung Cancer.

3.1 Statistical results Biomarkers Positron (eg. Epidermal Computerised Emission Growth Factor Ultrasound Chest axial Tomography Receptor— Bronchonoscopy guided lung Cytology X-ray tomography (PET) EGFR) / lung biopsy Biopsy analysis N Valid 118 117 111 100 113 110 113 Missing 19 20 26 37 24 27 24 Mean 9.78 9.31 6.72 5.54 8.34 7.54 9.01 Median 10.00 10.00 8.00 5.50 9.00 8.00 10.00 Std. Deviation .629 1.477 2.893 3.112 2.111 2.725 1.639 Percentiles 25 10.00 9.00 5.00 3.00 7.00 6.00 9.00 50 10.00 10.00 8.00 5.50 9.00 8.00 10.00 75 10.00 10.00 9.00 8.00 10.00 10.00 10.00

Figure 3.1: Availability of diagnostic investigation and testing 3.1 Open-ended Comments:

1 = Very low 10 10 = Very high 9 8 7 6 5 4 3

Mean level of agreement 2 1 0

Chest X-ray Cytology analysis

Bronchonoscopy / lungUltrasound biopsy guided lung biopsy Computerised axial tomography Positron Emission Tomography (PET)

Biomarkers (eg. Epidermal Growth Factor Receptor—EGFR)

66 | Report on lung cancer in Australia 1. Lack of direct billing affects patient access. 2. Access very much depends on the patients ability to travel to services not available locally. 3. Working in a large teaching hospital means the data base with all info is available on line. 4. Access to EGFR and other newer molecular testing (eg. MET, RAF, k-ras) is a critical need in the public hospital system. 5. I work in a teaching hospital with a lung multidisciplinary clinic. The hospital has just installed anew PET scanner. 6. These all depend on the Respiratory Specialists willingness to send people for further investigation. 7. Bronchoscopy and lung biopsy are limited by access frequency, then all biopsy/sampling is subject to significant delay in reporting of pathology/cytology results due to manpower resource insufficiency. 8. Some delays with biopsy. 9. Cost to the patient is a major limitation to access to EGFR. There is no PET scanner at my hospital and patients travel. 10. Pet avail but slow. 11. Access to bronchoscopy (10) and CT biopsy are different and access very different. We rarely do US biopsy in the lung setting. 12. Excellent access to tests available in the community. Very good access to the others through private specialists, quite reasonable access to the rest through the public system. 13. I rarely work up patients for a new diagnosis so these answers relate to the workup received by patients prior to referral for palliative care. 14. CT scans have a long wait—2 months; once a lesion is found, there may be a months wait for bronchoscopy and then the same for biopsy. 15. Access to EBUS in public sytem is very limited. 16. CT guided biopsy much more common than Ultrasound guided biopsy. 17. No PET scan, we refer patients to Sydney, biomarkers only if paid for by the company. 18. Never heard of EGFR. 19. I rely on specialists to arrange pet, egfr etc, presumably all Brisbane based, not in our region anyway. 20. Access to biomarkers is difficult due to costs associated with testing not availability of test. 21. I can get PET access but the delay and barriers are excessive. 22. There is only one PET scanner available in the state.

Literature review and national consultation on factors impacting on lung cancer outcomes | 67 Question 3.2: What is the average waiting time to access these Services / Personnel in your practice setting? Average Services Waiting Times:

Bronchoscopy and lung biopsy Computerised axial (CT) Ultrasound guided lung biopsy Frequency Percent Frequency Percent Frequency Percent < 1 week 29 21.2 < 1 week 70 51.1 < 1 week 32 23.4 2 to 3 weeks 39 28.5 2 to 3 weeks 15 10.9 2 to 3 weeks 33 24.1 3 to 4 weeks 13 9.5 3 to 4 weeks 2 1.5 3 to 4 weeks 12 8.8 5 to 6 weeks 4 2.9 5 to 6 weeks 2 1.5 5 to 6 weeks 3 2.2 > 6 weeks 1 .7 > 6 weeks 2 1.5 Not answered 48 35.0 Not answered 51 37.2 Not answered 46 33.6 Not available 9 6.6 Total 137 100.0 Total 137 100.0 Total 137 100.0

Biomarker testing (eg. EGFR) Cytology analysis Positron Emission Tomography (PET) Frequency Percent Frequency Percent Frequency Percent < 1 week 12 8.8 < 1 week 65 47.4 < 1 week 15 10.9 2 to 3 weeks 25 18.2 2 to 3 weeks 17 12.4 2 to 3 weeks 42 30.7 3 to 4 weeks 15 10.9 3 to 4 weeks 4 2.9 3 to 4 weeks 16 11.7 5 to 6 weeks 2 1.5 5 to 6 weeks 2 1.5 5 to 6 weeks 3 2.2 > 6 weeks 5 3.6 > 6 weeks 1 .7 > 6 weeks 2 1.5 Not answered 53 38.7 Not answered 47 34.3 Not answered 48 35.0 Not available 25 18.2 Not available 1 .7 Not available 11 8.0 Total 137 100.0 Total 137 100.0 Total 137 100.0

Chest X-ray Frequency Percent < 1 week 99 72.3 2 to 3 weeks 1 .7 5 to 6 weeks 1 .7 Not answered 36 26.3 Total 137 100.0

68 | Report on lung cancer in Australia Average Personnel Waiting Times:

Multi disciplinary care team Thoracic surgeon Respiratory physician Frequency Percent Frequency Percent Frequency Percent < 1 week 43 31.4 < 1 week 28 20.4 < 1 week 43 31.4 2 to 3 weeks 31 22.6 2 to 3 weeks 37 27.0 2 to 3 weeks 30 21.9 3 to 4 weeks 6 4.4 3 to 4 weeks 14 10.2 3 to 4 weeks 9 6.6 5 to 6 weeks 1 .7 5 to 6 weeks 3 2.2 5 to 6 weeks 6 4.4 > 6 weeks 2 1.5 > 6 weeks 3 2.2 > 6 weeks 4 2.9 Not answered 51 37.2 Not answered 50 36.5 Not answered 44 32.1 Not available 3 2.2 Not available 2 1.5 Not available 1 .7 Total 137 100.0 Total 137 100.0 Total 137 100.0

Medical oncologist Radiotherapist Frequency Percent Frequency Percent < 1 week 38 27.7 < 1 week 31 22.6 2 to 3 weeks 24 17.5 2 to 3 weeks 32 23.4 3 to 4 weeks 15 10.9 3 to 4 weeks 13 9.5 5 to 6 weeks 5 3.6 5 to 6 weeks 8 5.8 > 6 weeks 3 2.2 > 6 weeks 4 2.9 Not answered 52 38.0 Not answered 49 35.8 Total 137 100.0 Total 137 100.0 3.2 Open-ended Comments: 1. I am a radiologist, so don’t refer patients on. 2. This access is facilitated by the weekly lung multidisciplinary clinic and the telephone. 3. When I was diagnosed I was able to get access to all these tests, except PET, but the specialist I went to first, thought the Lump was not dangerous, I was 49, a non-smoker and quite healthy, so we will wait 3 months then have another scan, then another 3 months, I got a second opinion, the LUMP was cancerous, I had Lung Cancer and he got it wrong. As you can see, I know people slip through the cracks. 4. Would not usually directly access PET and EGFR other than via specialist. 5. Option of 1–2 weeks not given! 6. The wait for lung biopsy is not as long as for bronchoscopy. 7. No 1–2 weeks and see above re biopsy. 8. All services/personnel left blank have a waiting time of 1–2 weeks. 9. I am not sure if we have a multidisciplinary care team apart from Pall Care; medical oncologist visits from Adelaide monthly and radiotherapy has just opened so I don’t know. 10. These time frames are times to see the specialist but not times to start treatment (surgical and Radiation Onc). 11. Don’t know time for egfr, ct at Royal Adelaide > 3mths so I’d get it offsite in week. 12. All others less than 1week. 13. These are private wt times, turn weeks to months for public wait times. 14. Computer doesn’t permit similar answers to consecutive questions.

Literature review and national consultation on factors impacting on lung cancer outcomes | 69 Section 4: Referral for investigation, diagnosis and management

Question 4.1: Identify your level of agreement with the following 7 statements.

Table 4.1: Statistical results

Poor High High Clear prognosis Good access Distance comorbidity comorbidity guidelines Clear Multi- influencing to diagnostic impacts = challenging = less in general guidelines in disciplinary Patient likelihood of services in access to patient aggressive practice oncology team access reluctance referral practice services management treatment N Valid 110 110 110 110 110 113 110 110 109 Missing 27 27 27 27 27 24 27 27 28 Mean 5.48 7.24 7.68 4.89 3.35 8.00 4.23 7.30 5.40 Median 5.00 8.00 8.00 5.00 2.00 9.00 3.00 8.00 5.00 Std. Deviation 2.411 2.133 2.411 2.432 2.360 2.151 3.085 2.101 2.763 Percentiles 25 4.00 6.00 6.00 3.00 1.00 7.00 2.00 6.00 3.00 50 5.00 8.00 8.00 5.00 2.00 9.00 3.00 8.00 5.00 75 7.00 9.00 10.00 7.00 5.00 10.00 7.25 9.00 8.00

Figure 4.1: Diagnosis, mangement and treatment 4.1 Open-ended Comments:

10 1 = Strongly disagree 9 10 = Strongly agree 8 7 6 5 4 3

Mean level of agreement 2 1 0

Patient reluctance

Clear guidelines in oncology Multi-disciplinary team access

Clear guidelines in general practice Distance impacts access to services

High comorbidity = less aggressive treatment Poor prognosis influencingGood access likelihood to diagnostic of referral services in practice High comorbidity = challenging patient management

1. Some questions not applicable to my area of practice. 2. I have had Diabetes for 30+ years, it is not always the boxes you have to tick, to make people fit. Sometimes it is talking to the person in front of you and seeing how much they want to fight. 3. This question needs an “I don’t know” response option.

70 | Report on lung cancer in Australia 4. Treatment/management is a patient decision, on advice from the care team, not mine to decide aggressive or palliative etc. 5. I do not manage lung cancer patients.

Section 5: Treatment and management of lung cancer

Question 5.1: What factors influence Lung Cancer treatment and management in Australia?

Table 5.1: Statistical results

Multi- Thoracic Allied health disciplinary Residential Radiologist aurgeon Chemotherapy services team Psychologist Transport services N Valid 110 110 109 108 107 109 108 104 Missing 27 27 28 29 30 28 29 33 Mean 7.77 7.65 8.15 7.44 7.79 6.34 5.30 4.60 Median 9.00 9.00 9.00 8.00 9.00 7.00 5.00 4.00 Std. Deviation 2.558 2.694 2.360 2.470 2.448 2.816 2.829 2.660 Percentiles 25 6.00 6.00 7.00 6.00 7.00 4.00 3.00 2.00 50 9.00 9.00 9.00 8.00 9.00 7.00 5.00 4.00 75 10.00 10.00 10.00 10.00 10.00 9.00 7.75 7.00

Figure 5.1: Accessibility to specialists / services 5.1 Open-ended Comments:

10 1 = Strongly disagree 9 10 = Strongly agree 8 7 6 5 4 3

Mean level of agreement 2 1 0

Transport Radiologist Psychologist Chemotherapy Thoracic surgeon Allied health services Residential services Multi-disciplinary team

1. Public versus private affects access. 2. This is from my metropolitan palliative care practice viewpoint. 3. I would add physiotherapy here based on the evidence of the effectiveness of exercise and management of cancer symptoms. 4. All of the above does seem to depend on the ‘Pro-activity’ of your GP & Specialist.

Literature review and national consultation on factors impacting on lung cancer outcomes | 71 5. Responses for this item depend on what you mean by ready access. I have access to refer, but the waiting times for radiotherapy in particular are longer than I would like and longer than what I think clinically acceptable. 6. Access is there…but 2 hours away with access delays of several weeks. 7. Questions left blank are not relevant to me as a radiologist. 8. Feel access to palliative care services should be included. 9. Access to medical oncology is hampered not by a lack of staff but by their ability to make work for themselves, ie giving of futile or low efficacy treatment. Also their over recruitment to industry trials . 10. Last statement not applicable in my case. 11. We have to refer to a private radiotherapy company at extra cost for the patients or they have to travel each day for treatments. 12. I do not treat these patients so do not have the access you ask about. In the days when I did (five years ago in 3068) I found goo access to all the above. 13. I would have trouble catering for the psychosocial needs of my patients if I did not a thoracic cancer nurse consultant to assist.

Section 6: Outcomes of lung cancer in Australia

Question 6.1: Which factors impact on the outcomes of Lung Cancer management in Australia?

Table 6.1: Statistical results

Clear protocols Guide screen HP bleak view No cord times Wait Travel MDT Stigma HP under appreciated ServicesCoordination serviceCoordination delay Expertise Resources Access data Review N Valid 104 104 109 106 102 107 107 107 108 107 107 106 106 102 104 Missing 33 33 28 31 35 30 30 30 29 30 30 31 31 35 33 Mean 5.23 5.98 4.17 4.98 5.75 6.07 8.69 4.79 4.74 7.29 5.57 2.94 6.91 5.77 6.11 Median 5.00 7.00 4.00 5.00 6.00 6.00 10.00 5.00 4.00 8.00 5.00 2.00 8.00 6.00 7.00 Std. Deviation 2.917 3.034 2.379 2.626 2.826 2.452 1.988 2.660 2.846 2.194 2.610 2.390 2.674 2.988 3.318 Percentiles 25 3.00 3.00 2.00 2.75 3.00 5.00 8.00 2.00 2.00 6.00 3.00 1.00 5.00 3.00 2.00 50 5.00 7.00 4.00 5.00 6.00 6.00 10.00 5.00 4.00 8.00 5.00 2.00 8.00 6.00 7.00 75 8.00 8.00 6.00 7.00 8.00 8.00 10.00 7.00 7.00 9.00 8.00 4.00 9.00 8.00 9.00

72 | Report on lung cancer in Australia Figure 6.1: Factors potentially impacting outcomes

10 1 = Strongly disagree 9 10 = Strongly agree 8 7 6 5 4 3

Mean level of agreement 2 1 0

MDT Travel Stigma Review No cord Expertise Wait times Resources Guide screen Access data Clear protocols HP bleak view

HP under appreciatedCoordination services Coordination service delay

6.1 Open-ended Comment: 1. Active follow up by GP. 2. The stigma of Lung Cancer being a Cancer that people deserve effects so many areas of Lung Cancer treatment. 3. CT scans are printed on film, DICOM data cannot be imported into hospital PACS system for accurate review at multimodality meeting. Patients are being irradiated and because of politics the higher resolution digital images cannot be imported into the tertiary hospital PACS for proper review at the MDT, as is standard of care elsewhere in the world. The DICOM data for pet-ct scans are also often not released, which limits comparison with other CT imaging. There are only political motivations preventing this. 4. Lung cancer nurses would assist in the timely management of these patients. 5. Screening for lung cancer does not exist and is very much unproven. 6. I work in a remote aboriginal community and patients are reluctant to travel for cancer treatment. 7. Access for my NSW public patients is poor whereas private very simple in relation to obtaining surgery. 8. The treatment of lung cancer is dictated by the multidisciplinary team, not the GP. 9. We do have regular clinical meetings, near misses, topic reviews etc, not restricted to lung cancer cases. 10. We need to have a accessible database for lung cancer.

Literature review and national consultation on factors impacting on lung cancer outcomes | 73 Question 6.2: Please list three factors that would improve lung cancer management in Australia Priority 6.2.1: Open-ended Comments: 1. Greater access to group clinical trials. 2. Total ban on smoking. 3. Screening. 4. Multidisciplinary care in rural areas. 5. Resources to allow adequate database initiation and ongoing management. 6. Good pick-up and refer. 7. Regionally based specialist services. 8. Evidence based guidelines. 9. Greater awareness of symptoms among patients. 10. More PET scanners. 11. Reduce smoking. 12. Peer Review and Audit of Interpretation/Reporting of chest radiographs, by radiologists, along with timely reporting (also need to look at evidence base around requesting of chest radiographs). 13. Better coordination of care. 14. Early diagnosis. 15. Greater access to radiotherapy. 16. Improved national treatment guidelines. 17. Prevention—ban smoking. 18. Access to molecular testing like EGFR, MET. 19. Availability of CT/PET scanning. 20. Trying to reduce the stigma, by changing all those Ads for quitting smoking, which only make the stigma worse. Make people more aware of the disease itself, any symptoms, etc etc. Take control of your body and listen to it. 21. Better access to radiotherapy for metropolitan residents. 22. GP awareness of guidelines for diagnosis and management. 23. Improved availability of extended diagnostic service e.g. EBUS (funding issue). 24. Open PACS integration between public and private radiology practices, including rural sites. 25. Increased pathology service provision. 26. Co-ordination of services. 27. Easy access to bronchoscopy/CT biopsy. 28. Transport infrastructure. 29. Lung cancer nurses. 30. Better access to PET scans. 31. EBUS available to each major centre/MDT group. 32. Care coordination. 33. Resourcing clinical care, treatment access and research in proportion to clinical needs—that means redressing disproportionate resourcing of sexy cancers—breast and prostate. To fail to take this action is to perpetuate a clear injustice. 34. Screening patients with long history of smoking.

74 | Report on lung cancer in Australia 35. Increased GP education about how to best detect lung cancer. 36. Banning smoking!! :-) 37. Ready access to multidisciplinary teams. 38. Education and Symptom Control. 39. More Pet scanners. 40. Better coordination of care across disciplines. 41. A database and someone to administer it. 42. Readily accessible guidelines. 43. Access to multidisciplinary team. 44. Patient awareness of early symptoms. 45. Recognised time frames from referral to diagnosis and diagnosis to treatment. 46. Quit-smoking assistance for family members of patients. 47. Primary prevention—smoking ceasation. 48 Recognition that surgery should be performed in less than a month in the public arena. 49. Multidisciplinary care. 50. Better alert patients to symptomatology. 51. Awareness/ outreach to GPs. 52. Funding for more widespread Lung Cancer MDTs. 53. Prevention; further decrease in smoking. 54. Diagnostic improvements (PET). 55. PET availability. 56. Better access to specialist care for rural Australia. 57. A multidisciplinary approach—in my area, there is one such clinic but the other oncology service lacks one. 58. Earlier diagnosis—however we lack a good screening strategy. 59. Improve multidisciplinary team caring for lung cancer patients. 60. Clear guidelines for treatment of each type. 61. Early referral/diagnosis. 62. Increase cigarette tax.. 63. Integration with palliative care services 64. Lung function. 65. Independent ethics committee assessment of clinical trials with consumer involvement, ie limiting the use of gov funded resources to supplement pharma R+D. 66. Quicker access to endoscopy ie within 1–2 days. 67. Reducing the delay in diagnosis by. 68. Early diagnosis. 69. Better management of dyspnoea. 70. Greater radiotherapy services. 71. More radiation oncology units. 72. Coordination between services. 73. Earlier referral for diagnostic tests such as bronchoscopy to diagnose suspected lung cancers. 74. Improved access to PET services. 75. More research for early detection. 76. Access to all modalities of treatment in a hospital.

Literature review and national consultation on factors impacting on lung cancer outcomes | 75 77. Early referral. 78. Better national data management to identify areas of under-referral or under-performance. 79. Better coordinated care (multidisciplinary teams). 80. Improved coordination among clinicians. 81. Greater access to thoracic surgery. 82. Multi disciplinary teams. 83. Faster access to chest physicians/lung clinics. 84. Shortening public health services access block/waits. 85. Better access to investigative modalities, particularly PET scans. 86. MDTs. 87. Easier access to care team. 88. Don’t know. 89. Improve access to chemotherapy.

Priority 6.2.2: Open-ended Comments: 1. Patient awareness. 2. Stop people living into late middle/old age! 3. New drugs. 4. More oncologists in rural areas. 5. Quick access to specific treatment. 6. Improved transport in rural areas. 7. Access to PET scans. 8. Better coordination of care once patient referred. 9. All suspected or proven lung cancer discussed at MDM. 10. Improve regional rural based oncology services. 11. Secure follow-up/test tracking arrangements of abnormal chest radiographs that could indicate malignancy: Need policies and standards around test result communication by radiologist (critical test result notification policy) and referrer; IT systems; safety net provisions so that prompt clinical action occurs (=important public health measures); patient involvement in process; Electronic and personal health records. 12. Equal or greater funding that other cancers. 13. Early referral to management. 14. Improved electronic/ on line access to patient files/ images. 15. Allied heath to see patients as inpatients/outpatients/ and to provide specialist community input. 16. Faster access to PET scans. 17. Higher awareness of pathologists to the ever growing importance of histological subtype. 18. Annual screening CXR in smokers. 19. The money the government gets from cigarette taxes go into Lung Cancer Research and treatment not into general revenue. More money for setting up Support systems, as easy as putting a Lung Cancer Nurse Coordinator, in every Oncology Department and Radiotherapy Centre. Have a clear report/list of all support services available to people diagnosed with Lung Cancer. 20. Better access to all anti cancer treatment for rural and remote residents. 21. Increased patient awareness of signs and symptoms that may indicate that assessment is necessary.

76 | Report on lung cancer in Australia 22. Improved access to lung cancer services from outreach and country areas. 23. Co-registered DICOM pet-ct data should be provided with every scan on a CD, without encryption or a viewer. 24. Guidelines specifying goals for time to specialist assessment, diagnostic procedures and definitive treatment. 25. Multidisciplinary review. 26. Lung cancer nurses. 27. Timeliness to get treatment. 28. Mobile multidisciplinary care teams to help in rural and remote areas. 29. National commitment to reduce smoking in all age groups. 30. Proper MDTs. 31. Universal access to specialist lung cancer nurses. 32. Increased timeliness of referral to bulk billing services. 33. Better outreach services to rural areas. 34. Improved access to diagnostic bronchoscopy—akin to open access endoscopy. 35. Palliative Care Involvements. 36. More EBUS for Dx and staging. 37. Case manager/liaison nurse. 38. More pt-centred clinical research. 39. Multidisciplinary teams. 40. More resources for allied health professionals. 41. Faster availability of treatments when supporting evidence becomes available. 42. More support with smoking cessation. 43. Improved support services. 44. Medicare item number for multidisciplinary team meeting in private practice—all done at present in our own time without financial reward. 45. Tax cigarettes at $30 packet. 46. Remove stigma applied to smokers. 47. Awareness/outreach to resp physicians. 48. Funding for better availability of radiology and pathology tests. 49. Earlier diagnosis; good screening test. 50. More gp education via local hospitals. 51. Palliative care services. 52. Multidisciplinary help throughout Australia. 53. Timely referral to palliative care—most will not survive! 54. Targeting high risk groups and geographic areas—often at the city fringe. 55. Improve accessibility to oncologist and respiratory physicians. 56. Education of diagnostic procedure gamuts. 57. Regular updates for GPs/Resp Physicians. 58. Better access to multidisciplinary clinics. 59. Better symptom management. 60. Bronchoscopy. 61. Improved coord of services, eg wide use of nurse practitioners to aid patient journey. 62. Less delays for PET scanning.

Literature review and national consultation on factors impacting on lung cancer outcomes | 77 63. Access to a one stop referral point for a complete work up of a suspected lung cancer. 64. Rapid access to clinicians. 65. Community availability of opioids to manage breathlessness. 66. Increased support for MDM. 67. Better accommodation options for patients/relatives near tertiary treatment centres. 68. Fast turnaround time for investigations. 69. Referral of all lung cancer patients to denoted lung cancer specialists who see and treat a minimum number of lung cancer patients per year (includes respiratory physicians, surgeons, radiation and medical oncologists). 70. More thoracic surgeons. 71. More training for health workers for preventive and early detection. 72. Better communication between specialists. 73. Timely investigations. 74. Education of general physicians and general practitioners to refer all patients to a lung cancer clinician. 75. Better access for rural patients. 76. Improved access to PET imaging. 77. Easier access to PET. 78. More PET scanners. 79. Faster access to oncology teams. 80. Better co-ord so more of the care CAN be done regionally. 81. Better resources outside of tertiary referral centres. 82. Availability of clinical guidelines. 83. Easier bronchosocpy. 84. Improve community based palliative care services. 85. Screening of at risk groups. 86. Multidisciplinary meetings. 87. Thoracic surgeon availability for regional & remote areas. 88. Research. 89. Expansion of radiotherapy services.

Priority 6.2.3: Open-ended Comments: 1. Better regional service provision. 2. More regional cancer care centres. 3. GP to be a good organiser to coordinate whole management. 4. Early intervention programs. 5. More knowledge re tests for Dx. 6. Better communication at the interface with primary care. 7. Research funding increase. 8. Improve ambulatory/community support to minimise treatment side effects. 9. Improved and resourced involvement of the Radiologist in the MultiD team, with better coordination/ teamwork/communication, and audit. National and International standards. 10. Greater awareness in community and by medical staff of the impact on non-smokers.

78 | Report on lung cancer in Australia 11. Smoking cessation clinics. 12. More hospital beds. 13. Improved lung cancer multidisciplinary teams. 14. More coordinated interdisciplinary care. 15. More access to trials of novel agents like MET inhibitors. 16. GP and patient education about early symptoms. Also improve services such as Quitline for the nicotine addicted. 17. Make some ads about the people, who are being treated for Lung Cancer, the ones that are on a Chemo drug that has few side effects, show people that the treatment is not as bad as doing nothing. Show people it is not always terminal. It is peoples attitude towards Lung Cancer, not just patients but all the other Specialists, Nurses etc. 18. Treatments that are effective in curing late presenting disease! I wish!!! 19. Awareness by GPs of appropriate investigations. 20. Funding for regional lung cancer centre. 21. Greater facilities & staff in cancer centers / tertiary hospitals to cope with increasing prevalence from an aging population. 22. Health promotion. 23. More positive approach by non cancer specialists. 24. Care for the carers. 25. Higher detection of asymptomatic early stage cancers. 26. Interested medical oncologists and radiation oncologists. 27. Coordination of management between community and hospitals. 28. More streamlined referral into the tertiary system. 29. Multidisciplinary approach. 30. More radiotherapists and oncologists. 31. Earlier referral for palliative care involvement in Stage 4. 32. Access to support groups. 33. Family being able to travel with the patient and stay with them. 34. Patient education. 35. More radiotherapy time and PET scanners. 36. Increased palliative care services. 37. Greater research funding. 38. Further reduce smoking. 39. More dedicated thoracic surgical input. 40. Updated practical lung cancer guidelines for diagnosis and management. 41. Better anti-cancer systemic agents/drugs. 42. More school education. 43. Allied health esp psychology. 44. Thinking carefully about treating anyone with a lot of co-morbidity. 45. Improved Palliative Care Services. 46. Raise the index of suspicions for lung cancers in primary care. 47. Public education about outcomes in a realistic perspective. 48. Access to diagnostic services. 49. Increase training numbers of thoracic physicians and surgeons.

Literature review and national consultation on factors impacting on lung cancer outcomes | 79 50. Better patient and family support. 51. Physio. 52. Credentialing thoracic phys doing FOB, ie make sure all that do FOB can then triage cancers to special units. 53. Less delay in the public system for invasive biopsy. 54. Improved access to allied and psychological support services. 55. Consideration for rural patients in terms of costs for accommodation. 56. Community based services to assist caregivers to manage care needs. 57. More PET scanners. 58. More education of patients. 59. The investigation report being followed up by more than GP (e.g physician). 60. Presentation of all lung cancer patients at a multidisciplinary team meeting or alternatively all cases where management recommended deviates from guidelines. 61. Improved education GPs. 62. More research in treatment modalities for dif. types of lung cancer. 63. Shorter waiting times to start chemotherapy. 64. Lung case manager. 65. Support for translational research infrastructure at high volume sites. 66. Shorter waiting times. 67. Improved access to thoracic surgeons. 68. Better availability for beds in nursing homes. 69. Better funding to support transport, accommodation, carers going tertiary etc. 70. More research into screening and preventative measures. 71. Better after hours community palliative care services. 72. Easier access to palliative treatments. 73. Improve access to PET scanners. 74. Aggressive investigation of pulmonary nodules. 75. Treatment with out delay. 76. Follow up with case studies with GPs. 77. Early diagnosis. 78. Expansion in the number of cancer nurses and MDT coordinators.

80 | Report on lung cancer in Australia APPENDIX 6: CONSULTATION ROUND 2 RESULTS

SURVEY 2: RESULTS SUMMARY

Section 1: Some information about you

Question 1.1: Please mark the capacity/position in which you are answering questions in the survey

Table 1.1: Participant Demographics: Professional Description Frequency Percent Advanced trainee general practice 4 2.67 Advanced trainee medical oncologist 5 3.3 Advanced trainee palliative care 2 1.33 Advanced trainee respiratory medicine 1 0.67 Cardiothoracic surgeon 3 2 Care coordinator 2 1.33 Consumer 1 0.67 Dietitian 5 3.3 General practitioner 20 13.3 General radiologist 7 4.8 General surgeon 5 3.3 Medical oncologist 14 9.33 Nurse practitioner (hospital) 1 0.67 Nursing director (administration) 1 0.67 Palliative care nurse coordinator in an acute hospital 1 0.67 Palliative care physician 13 8.67 Pharmacist 1 0.67 Physiotherapist 4 2.8 Psychologist 1 0.67 Practice support officer 1 0.67 Radiation oncologist 7 4.8 Radiation therapist 1 0.67 Registered nurse (general practice) 1 0.67 Registered nurse (hospital) 10 6.67 Research director 1 0.67 Research nurse/manager 1 0.67 Researcher 11 7.33 Respiratory physician 18 12 Thoracic surgeon 3 2 Not answered 5 3.3 Total 150 100

Literature review and national consultation on factors impacting on lung cancer outcomes | 81 Question 1.2: In which state or territory do you work principally?

Table 1.2: Participant Demographics: State

Frequency Percent Australian Capital Territory 1 0.67 New South Wales 45 30 Northern Territory 1 0.67 Queensland 24 16 South Australia 15 10 Tasmania 7 4.66 Victoria 23 15.33 Western Australia 25 16.67 Not answered 9 6.0 Total 150 100

Question 1.3: In what Region do you work primarily?

Table 1.3: Population Demographics: Region

Frequency Percent Metropolitan 84 56 Regional 18 12 Remote 2 1.33 Rural 13 8.67 Not answered 33 22 Total 150 100

Question 1.4: In what Sector do you work primarily?

Table 1.4: Population Demographics: Sector

Frequency Percent Academic/Research setting 23 15.33 Policy 1 0.67 Private hospital 3 2 Private practice 38 25.33 Public hospital 48 32 Public practice 29 19.33 Not applicable 2 1.33 Not answered 6 4 Total 150 100

82 | Report on lung cancer in Australia Section 2: Improving diagnosis of lung cancer

Question 2.1: Do you perceive VARIATIONS for diagnostic/staging practices in the clinical area in which you work or represent?

Table 2.1: Perceived VARIATIONS in diagnostic / staging practices in clinical area

Frequency Percent No 68 45.33 Yes 57 38.00 Not answered 25 16.67 Total 150 100 2.1 Open-ended Comments: 1. We try and follow up all clinically suspicious cases. 2. Although MDT is a team tool for patient management—the primary physician will always decide what they believe is best for their patient. 3. EBUS transbronchial needle aspiration has the potential to significantly improve staging of lung cancer by sampling of hilar and mediastinal LN, but is only available in one or two centres and consequently is under utilised. PET scanning is only available in one centre in WA and time constraints may limit access to this staging modality. 4. Yes at multiple levels. Many patients don’t get beyond GPs. Many don’t get access to appropriate surgical opinions. PET scans are variably accessible. 5. Variation has improved with institution of MDM. 6. Virtually all patients are staged with a PET scan. The main variable is whether enlarged nodes are sampled for definite proof of involvement. Mostly not, but this is changing to some extent with availability of EBUS. 7. Poor access to PET scanning outside of metro area. ? less access to surgery outside metro area. 8. Best if patient suspected of having lung cancer is referred early to a respiratory physician. 9. After MDT meetings, a diagnostic plan is decided on which is standard for our Unit. 10. Depends on public patient or privately insured. 11. Slightly more difficult for my patients to access EBUS and PET than those who reside in a metropolitan area. 12. Depends on who sees the pt first and whether they attend the lung cancer multidisciplinary team meeting. General physicians and non-attendees are less likely to fully stage pt. 13. Difference in how or when pts are referred to our combined lung services. Once they are seen there, things are quite streamlined and orderly. 14. Minor variations only. 15. PET availability can limit usage. 16. I haven’t seen any cases recently, so hard to comment. 17. Often very patient and situation dependant—co-morbidities, initial diagnosis, malignancy type, initial follow-up and timing of referral to the multi-disciplinary lung team. 18. Non clinical.

Literature review and national consultation on factors impacting on lung cancer outcomes | 83 19. Depends upon (1) to whom patient first referred eg. respiratory physician, thoracic surgeon, acute hospital (2) public/private (3)rural or ‘in town’. 20. Has not diagnose any lung cancer yet. 21. Private much quicker. 22. Variability in determining lymph node pathological staging after PET scans. 23. I think it is MultiD management; uncertain about formal pathway/protocol. 24. Private sector = predictable whereas public sector is unpredictable re being extraordinarily efficient or inefficient. 25. I do but this is due to many causes not the least of which is timing of patient presentation. 26. I don’t work in a clinical area, so cannot comment. 27. I do not work in a clinical setting. 28. My research/clinical area does not include individuals with lung cancer. 29. N/A. 30. Variable referral times and pathways. Question 2.2: In your practice setting in which you work or represent, do you observe DELAYS in diagnosis/staging of lung cancer?

Table 2.2: Do you observe DELAYS in diagnosis/staging of Lung Cancer?

Frequency Percent No 49 32.67 Yes 77 51.33 Not answered 24 16.00 Total 150 100 2.2 Open-ended Comments: 1. Access to PET scan and Radiotherapy services. 2. Occasionally, usually due to clinical factors or remote locations. 3. Try not to. 4. Occasionally suspicious chest x-ray lesions are overlooked or ignored and appropriate review or management are not organised. 5. Service limitations—demand on access to CT / PET-CT is increasing. 6. Multiple difficulties, availability of theatre time for EBUS bronchoscopy, waiting time for PET scan several weeks etc. 7. Mainly from accessing a limited resource such as PET scanning. 8. Yes—not general access to PETs. Some patients not being referred early enough. 9. From initial symptom presentation to primary health provider to investigations that lead to diagnosis. 10. Sometimes incomplete referral detail may delay the booking of a new patient with a more serious diagnosis. 11. Impossible to get cts at rah in less than a few mths notice. 12. The main delay I see is a patient having an investigation and then waiting for some time for the follow up appointment to discuss the result and organise the next step. 13. Access to biopsy services.

84 | Report on lung cancer in Australia 14. Waiting lists for bronchoscopy 2 weeks, Endobronchial ultrasound guided biopsy 3–4 weeks, PET scans 3 weeks. Major delay is wait to see medical oncologist 7 weeks, then after that to have chemotherapy another 4–6 weeks. Radiation oncology delay to see radiation oncologist is short 1–2 weeks, but then delay to have radiotherapy is another 6 weeks. 15. Obtaining a PET scan can sometimes take >2 weeks. 16. There are strong links between Respiratory Physicians, Surgeons, Medical and Radiation Oncologists is close. 17. Delays in patients seeing specialists for bronchoscopy. 18. Once the concern is raised it may be weeks before appointment available for definite diagnosis/ management, but usually accomodated as soon as possible. 19. 2–3 week delay for PET scan. FNA often limited by availability of cytologist. 20. Slight. 21. Limited experience with lung cancer patients thus far. 22. This is always going to happen in any system but the absence of a Public PET Scanner in Tasmania is a major issue. 23. Some difficulty in getting access to CT scans in public hospital and some delays in accessing PET scans. 24. There are inevitable delays in diagnosis but once a diagnosis is suspected things move quickly. 25. Not a useful question! Dealys occur occasionally. 26. As above (delays in getting a PET). 27. Only with history of late presentation to medical practitioner. 28. Particularly public and rural patients. 29. Not applicable. 30. Lung masses identified on CXR or CT Chest are sometimes not followed up or lost to follow-up, then re-present symptomatically. 31. As before. 32. More remote patients take up to 4 times as long to access services due to issues with travel and access to CT. 33. NOT PARTICULARLY DEPENDS ON WHICH PHYSICIANS INVOVLED. 34. There have been cases of delayed diagnosis related to chest xray reports describing possible lung cancer not being followed-up on, nor directly communicated, for various reasons. 35. Multifactorial from late pt presentations, pts delaying investigations b/c of gap fees on imaging, delays getting pts appts @ outpts clinics etc. of course missed diagnosis too…chronic cough when pertussis outbreak amongst older citizens = more of a challenge as to who to xray when clinically clear chest. 36. Access to PET scan, especially for rural patients. 37. Usually, no, unless for cases where the patients have delayed their presentations to seek medical help. 38. Limited access to CT biopsy. 39. Limited availability of PET scanning and Endobronchial ultrasound can delay staging procedures. 40. I cannot comment as I only see patients with confirmed diagnoses. 41. My research/clinical area does not include individuals with lung cancer. 42. Delays in getting appointments to see specialist.

Literature review and national consultation on factors impacting on lung cancer outcomes | 85 Question 2.3: Variations in the evidence based use of diagnostic and staging interventions of lung cancer contributes to variations in outcomes.

Table 2.3: Evidence based use diagnostic/staging interventions contribution to VARIATION

Frequency Percent Strongly disagree 2 1.33 Disagree 12 8.00 Somewhat agree 39 26.00 Agree 55 36.67 Strongly agree 18 12.00 Not answered 24 16.00 Total 150 100 2.3 Open-ended Comments: 1. It is the use by the individual treating physician of the early use of diagnostic tools which will determine the eventual outcome for the patient. 2. I suspect this to be the case but lack evidence to support this claim. 3. We do not invasively stage the mediastinum as much as we should. 4. Tissue diagnosis is essential, scan results are a guide only. 5. PET scanning changes up and downstages in a large percentage of cases. Less frequent use of PET can cause variations. 6. Unsure as not often aware of the outcomes. 7. Can’t comment accurately as I don’t see sufficient cases. I presume we are talking about primary lung cancer? 8. Evidence based medicine obviously has a large impact on how a diagnostic/staging issue is pursued and resolved, but hopfully in most cases there is a general (current) consensus on how to proceed and resolve most questions. 9. Access to services (medical assessment & investigations) is more important in causing variation 10. Need national and international guidelines, with implementation strategies than ensure audited compliance with feedback, and measures; and also mandatory documentation of any variation from pathway. 11. I feel that this is strongly influenced by the stage of patient presentation to a GP and the GP’s speed in facilitating action. 12. Poor or late staging has potential to affect the type of treatment and therefore outcome. 13. N/A cannot comment. 14. Managing of comorbidities can be challenging.

86 | Report on lung cancer in Australia Section 3: Investigation for lung cancer

Question 3.1: Please indicate your level of agreement with the influence of the following factors on the accurate and timely DIAGNOSIS of Lung Cancer.

Table 3.1: Statistical results Patient delay Patient reluctance Lack recognition Futility HP Futility patient Access guidelines No followup Distance Decision delay No Access MDT Comorbidities Valid 117 117 117 117 115 115 117 115 117 117 117 N Missing 16 16 16 16 18 18 16 18 16 16 16 Mean 7.57 4.84 5.44 5.02 4.81 5.31 5.92 6.33 5.32 5.48 6.62 Median 8.00 4.00 5.00 5.00 5.00 5.00 6.00 7.00 5.00 5.00 7.00 Std. Deviation 1.909 2.410 2.002 2.301 2.251 2.241 1.881 2.398 2.059 2.528 2.016 25 6.50 3.00 4.00 3.00 3.00 3.00 5.00 5.00 4.00 3.00 5.00 Percentiles 50 8.00 4.00 5.00 5.00 5.00 5.00 6.00 7.00 5.00 5.00 7.00 75 9.00 7.00 7.00 7.00 7.00 7.00 7.00 8.00 7.00 8.00 8.00

Figure 3.1: Perceived variations in diagnostics / staging practices in clinical area

10 1 = Strongly disagree 9 10 = Strongly agree 8 xx No. of respondents 7 6 5 4 3

Mean level of agreement 2

1 117 117 117 117 115 115 117 115 117 117 117 0

Futility HP Distance Patient delay No followup Futility patient Decision delay Comorbidities Lack recognition No Access MDT Patient reluctance Access guidelines

3.1 Open-ended Comments: 1. Inefficient outpatient service. 2. Pts who are worked up through MD meetings are diagnosed and staged much more quickly than for example, a country pt who doesn’t have (easy) access to MD team. 3. As a palliative care specialist—hard for me to comment—I usually see people sometime after they present and tend to focus less on the initial diagnosis, unless it is something which concerns the patient. 4. Again, I am concerned my answers aren’t representative as I have seen so few cases. 5. Delay in review of patient after test is ordered and performed; inability of health professional to order multiple critical tests at one time—instead ordering tests one at a time.

Literature review and national consultation on factors impacting on lung cancer outcomes | 87 Section 4: Improving diagnosis of lung cancer

Question 4.1: Is there variation in APPROPRIATE and TIMELY REFERRAL for diagnostic and staging investigations in your area of experience?

Table 4.1: Is there variation in APPROPRIATE and TIMELY REFERRAL?

Frequency Percent No 49 32.67 Yes 76 50.67 Not answered 25 16.67 Total 150 100 4.1 Open-ended Comments: 1. No local access to PET scan. Delay in fine needle biopsies in public sector. 2. If there is the slightest suspicion we have very good private and public facilities to follow up diagnosis and Rx. 3. More related to rural patients. 4. Inpatient bronchoscopy more rapid than patients referred to outpatient services, but inevitably so. 5. We can experience delays in obtaining some investigations, notably bronchoscopy and PET. 6. Where I work we have timely access to investigations. 7. Usually able to access this quicker with private insurance rather than in the public sector. 8. There can be long delays in patient workup and staging partly. This may be due to resources (ie availability of biopsy, cytology, PET scan) but also clinician and sometimes patient nihilisim and lack of awareness of importance of early referral. 9. Generally good and appropriate, but not always. 10. We are fortunate within our area health services to streamline timely referral, staging etc. It is patients in the rural areas that are most handicapped re timely referrals, diagnostic tests etc. 11. Not after a diagnosis is suspected and initial testing is performed. 12. Can’t judge. 13. Unfortunately as an imaging specialist I do not have the relevant information to make a valid comment on this point. 14. In ‘my area of experience’ no delay in timely referral but delay in being able to access some diagnostic/staging tests eg. ebus, bronchoscopy etc. 15. Occasionally. 16. As per prev answers of pt, geog, $, dr , hosp, specialist variables & imaging etc services availability. 17. I can’t comment as I only see patients with confirmed diagnoses, but the system refuses to allow me to proceed without providing an answer. 18. Although over 90% of patients are referred, a significant proportion are not referred to a treating physician who may be the best judge to whether the patient is appropriate for treatment.

88 | Report on lung cancer in Australia Section 5: Improving diagnosis of lung cancer

Question 5.1: Do you think these variations in APPROPRIATE and TIMELY REFERRAL contribute to variations in outcomes?

Table 5.1: Do referral variations contribute to outcome variations

Frequency Percent No 5 6.67 Yes 67 44.67 Not answered 78 52 Total 150 100 5.1 Open-ended Comments: 1. Delay in treatment worsens outcomes. 2. Not possible to make a judgment about this. 3. Difficult to say—it has been a long time since I worked clinically with these patients. 4. Sometimes. 5. Rarely. 6. Probably more from a psychological angle with a longer time of living with uncertainty rather than a real change in clinical outcome. 7. Not uncommonly we see that the tumour has progressed on the planning CT scan and PET scan done for radiotherapy when compared to the diagnostic CT which may be 4–8 weeks old. 8. We see some pts who had a potentially operable cancer a few months or even years ago, who now are clearly inoperable. 9. Once diagnosed (the variation) referral and staging seem timely.

Literature review and national consultation on factors impacting on lung cancer outcomes | 89 Section 6: Improving diagnosis of lung cancer

Question 6.1: In your opinion will the following initiatives improve the timely DIAGNOSIS and STAGING of lung cancer and improve outcomes?

Table 6.1: Statistical results

Access to Targeted specialist List of Prognosis, Targeted education— Improved lung locally risk, surgery Diagnostic Updated education— Health access to cancer available suitability Information Guidelines Patient Professional MDT networks services Information for Patient N Valid 114 113 111 114 113 113 113 112 Missing 19 20 22 19 20 20 20 21 Mean 7.17 7.24 7.68 7.82 7.87 6.95 6.94 7.27 Median 8.00 8.00 8.00 8.00 8.00 7.00 7.00 8.00 Std. Deviation 2.402 2.135 1.869 1.926 1.878 2.382 2.253 2.214 Percentiles 25 5.00 6.00 7.00 7.00 7.00 5.50 5.00 6.00 50 8.00 8.00 8.00 8.00 8.00 7.00 7.00 8.00 75 9.00 9.00 9.00 9.00 9.00 9.00 9.00 9.00

Figure 6.1: Perceived probability of initiatives to improve timely diagnosis, treatment and outcomes of lung cancer

10 1 = Strongly disagree 9 10 = Strongly agree 8 7 6 5 4 3

Mean level of agreement 2 1 0

Updated guidelines

Improved access to MDT Targeted education—patient List of locally available services Diagnostic information for patient

Targeted education—health professionalAccess to specialist lung cancer networks Prognosis, risk, surgery suitability information

6.1 Open-ended Comment: 1. Mutidisciplinary pathways for lung cancer including palliative care options. 2. Lung cancer hotline for each area that links to MDT.

90 | Report on lung cancer in Australia 3. More lung cancer nurse coordinators who will work effectively within the mdt, local GP services and in educating the wider public. At present there are 7 lung cancer nurses in NSW…some positions are shared with other tumour groups. 3. Guidelines are useful but do not cover every unique situation and all variables—the point where a multi-disciplinary approach is so useful. 4. Provide individual mentors. 5. More specialist doctors in regional centres (program not accepting dots). 6. This information needs to be strongly focused to communities of people with English as a second language. Question 6.2: Where would clinical guidance information on DIAGNOSTIC and STAGING best be targeted

Table 6.2: Statistical results

Frequency Percent General Practitioners 109 91.6 Respiratory Physicians 76 63.9 General Physicians 66 55.5 Palliative care Physicians 15 12.6 Anaesthetists 3 2.5 Radiologists 31 26.1 Medical Oncologists 40 33.6 Radiation Oncologists 32 26.9 Thoracic Surgeons 44 37 Cardiothoracic surgeons 30 25.2 Consumer material 48 40.3 Nursing and Allied Health 34 28.6

Figure 6.2: Where information would be best targeted

100 90 80 70 60 50 40 30

Respondent selected (%) 20 10 0

AnaesthetistsRadiologists General physicians Thoracic surgeons Consumer material General practitioners Medical oncologists Respiratory physicians Radiation oncologists Palliative care physicians Cardiothoracic surgeonsNursing and allied health

Literature review and national consultation on factors impacting on lung cancer outcomes | 91 Section 7: Health professionals at the time of diagnosis

Question 7.1: In your experience do you access a multidisciplinary team of specialists at the time of DIAGNOSIS and STAGING?

Table 7.1: Statistical results

Frequency Percent No 8 5.33 Yes 80 53.33 This question does not apply to me 19.33 Not answered 33 22 Total 150 100

Figure 7.1: Do you access an MDT at diagnosis

100 90 80 70 60 50 40

MDT access (%) 30 20 10 0

No Yes

Not answered

This question does not apply to me

Question 7.2: Do you consider that the following health professionals should be part of the MDT at time of DIAGNOSIS?

Table 7.2: Statistical results

YES NO Medical oncologist 98.3 1.7 General practitioners 77.6 22.4 Respiratory physicians 99.1 0.9 Radiation oncologists 96.5 3.5 Palliative care physicians 77.9 22.1 Surgeon 96.4 3.6 Care coordinator / Lung cancer nurse 96.6 3.4

92 | Report on lung cancer in Australia Figure 7.2: Type of health professional should be part of the MDT at time of diagnosis

Yes No

100 90 80 70 60 50 40 30

Respondent agreement (%) 20 10 0

Surgeon

Medical oncologist General practitioners Respiratory physiciansRadiation oncologists Palliative care physicians

Care coordinator / Lung cancer nurse

7.2 Open-ended Comment: 1. Nuclear Medicine specialist, pathologist. 2. GP by invitation. 3. Dietitian. 4. Pathologist!!! Radiologist!!! Wish list—Social worker. Psychologist—high rate of anxiety in this GP. GPs don’t have many pt/yr so? worth their time. 5. Social worker. 6. Radiologist, pathologist. 7. Radiologist, maybe pathologist. 8. Radiologist, pathologist. 9. GPs are welcome to come but in practice do not attend our MDT. 10. Social worker. 11. Occupational therapist, social worker, dietitian, physio. 12. Allied Health. 13. Pathologist & radiologist & nuclear medicine. 14. I think a palliative care physician would be helpful if patient has metastatic disease or other co-morbidities that prohibit curative therapies, but not if the patient is receiving treatment with curative intent. 15. Radiologist. 16. I didn’t include GP as difficult to get them in to each meeting but communication with GP must be a priority. 17. Pathologist. 18. Pathologist. 19. Social worker. 20. Radiologist.

Literature review and national consultation on factors impacting on lung cancer outcomes | 93 21. Surgeon should be thoracic, GP not practical. 22. GP would be good, but usually not practical. 23. Not necessarily at Diagnosis but certainly at the beginning of the treatment process as diagnosis as such will often be in GP office. 24. Radiologist with PET training. Pathologist. 25. Psycho-oncologist. 26. GP should be involved in decision making—re psychosocial issues and co-morbidities.

Section 8: Health professionals at the time of diagnosis

Question 8.1: In your practice setting/experience do you witness VARIATIONS in ACCESS to MDT?

Table 8.1: Statistical results

Frequency Percent No 57 38.0 Yes 63 42.0 Not answered 30 20.0

Total 150 100

Figure 8.1: Variations in access to MDTs

100 90 80 70 60 50

Variations 40 30 20 10 0

No Yes

Not answered

8.1 Open-ended Comment: 1. Depends on holidays as meeting only once weekly. 2. Only for rural patients who cannot attend metropolitan hospitals. 3. Not all centres have radiation or thoracic surgery and palliative care availability is disastrous. 4. Private practice has “pretend mdts” ie a few with minimal subspecialty interest may discuss case to get medicare mdt fee, or no mdt at all. Also focus of med oncs on what trial thay can get people into.

94 | Report on lung cancer in Australia 5. Difficult to say—see previous comment. 6. Rural sector. 7. If a respiratory physician (who is the commonest person to make the diagnosis) is not attached to a hospital who has a MDT team then that patient is unlikely to be discussed there. 8. Use of and access to mdt in private sector is difficult. 9. Not every local practitioner involved in the care of lung cancer patients is prepared to have their cases discussed at an MDM. 10. ? no availability of multidisciplinary teams in this area. 11. It is not so much access as who choses which patients to present at the mdt. Physicians who do not attend the mdt will not present their patients. Sporadic attendees also select which patients to present. 12. All the patients I see are seen at a major teaching hospital. 13. Can depend on range of specialists available. 14. Regional centre. considers all cases referred to our centre. 15. Transport, costs, time, inclination of pt, style of GP & specialists involved, multidisc teams in public hosp dont routinely involve the patient directly. 16. Regional centre affiliated with tertiary city hospital. 17. Frequency is the major issue with at times 3+ weeks between meetings. 18. Patients in the private sector have much less access to an integrated team in my experience and this is certainly true when the need is for Allied Health or nursing support. There is no question that this is the case. Palliative Care support in the private sector particularly for people requiring in PATIENT CARE IS WITH SOME EXCEPTIONS VERY PATCHY. 19. Not within central metropolitan area. 20. Do not work in clinical setting.

Section 9: Health professionals at the time of diagnosis

Question 9.1: What are some of the reasons for this variation in access to an MDT at the time of DIAGNOSIS?

Table 9.1: Statistical results

Percent Frequency I am not convinced of the benefit of a multidisciplinary team 5.4 3 The incentive to participate in a multidisciplinary team is not sufficient 19.6 11 There is no multidisciplinary team in my area 25 14 I am unaware of how to access a multidisciplinary team 12.5 7 The distance to travel limits me accessing a multidisciplinary team 19.6 11 The location of specialists across public and private sectors challenges the conduct of 36 multidisciplinary team meetings 64.3 The time involved limits me participating in a multidisciplinary team 32.1 18

Literature review and national consultation on factors impacting on lung cancer outcomes | 95 Figure 9.1: Reasons for variation in MDT access

100 90 80 70 60 50

Variation 40 30 20 10 0

Not MDT in area

Distance limits MDT access Time limits MDT involvement Not convinced of MDT benefit Unaware of how to access MDT MDT particiaption not incentivised

Public/private specialist spread complicated MDT

9.1 Open-ended Comment: 1. Not all specialists available at all hospitals. 2. Poor chair skills of the MDT meeting, limits discussion and outcomes, makes attending less worthwhile. 3. Lots of patients go thru private system. 4. I chair a MDT so I’m hooked on the idea. My previous comments did not pertain to myself but rather colleagues not associated with hospitals who have a MDT. 5. Medicare does not realistically support this. 6. And see previous comment. 7. “Political problems”, medical oncologists either sabotaging or highjacking the meeting. 8. Timely referral to a specialist participating in the multidisciplinary team. 9. Meetings occur every second week creating delays, and there is no thoracic surgeon involved. 10. Frequency of the meetings and the need for all the oncologist to be there (i.e. their inability to stream). 11. Multidisciplinary teams do not always have to meet in the one place at one time. 12. Limited no of palliative care clinicians limits ability to be present at all MDT meetings. 13. MDT meetings are not run as intended, as a discussion about prospective or current patients.

96 | Report on lung cancer in Australia Section 10: Improving monitoring of individuals at high risk

Question 10.1: In your setting do you have clear protocols for the monitoring of patients with respiratory symptoms who are not diagnosed with lung cancer on initial presentation?

Table 10.1: Statistical results

Frequency Percent No 88 58.67 Yes 29 19.33 Not answered 33 22.00 Total 150 100

Figure 10.1: Are clear protocols for monitoring high risk individuals available in your setting?

100 90 80 70 60 50 40 Percentage (%) 30 20 10 0

No Yes

Not answered

Question 10.2: In your opinion, do you think guidance material to monitor patients with a high risk for lung cancer would be beneficial?

Table 10.2: Statistical results

Frequency Percent No 23 15.34 Yes 92 61.33 Not answered 35 23.33

Total 150 100

Literature review and national consultation on factors impacting on lung cancer outcomes | 97 Figure 10.2 Benefits of developing guidance materials for monitoring high risk patients

100 90 80 70 60 50 40 Percentage (%) 30 20 10 0

No Yes

Not answered

Question 11.1: From your experience please indicate your level of agreement of the influence of the following factors on the effective TREATMENT of lung cancer

Table 11.1: Statistical results futility—patient Treatment futility—health Treatment professional Access to guidance materials / Specialist care up patients to follow Failure at risk interventionSurgical delays Medical oncology intervention delays interventionRadiotherapy delays Long distance to specialist services Access to multi-disciplinary team to travel Patient reluctance in palliative care Variations in surgical Variations treatment in oncological Variations treatment in radiotherapy Variations N Valid 106 106 106 106 106 105 106 107 106 107 107 106 106 104 Missing 27 27 27 27 27 28 27 26 27 26 26 27 27 29 Mean 5.86 6.11 5.46 6.03 5.29 4.85 5.59 6.74 5.61 5.22 5.31 5.20 5.16 5.12 Median 6.00 6.00 5.00 6.00 5.00 5.00 6.00 7.00 5.50 5.00 5.00 5.00 5.00 5.00 Std. Deviation 2.223 2.273 2.318 1.954 2.125 2.152 2.441 2.169 2.569 2.312 2.349 2.188 2.057 2.101 Percentiles 25 4.00 5.00 4.00 5.00 3.00 3.00 3.75 5.00 3.00 3.00 3.00 3.00 3.00 3.00 50 6.00 6.00 5.00 6.00 5.00 5.00 6.00 7.00 5.50 5.00 5.00 5.00 5.00 5.00 75 8.00 8.00 7.00 8.00 7.00 6.00 8.00 9.00 8.00 7.00 7.00 7.00 6.00 7.00

98 | Report on lung cancer in Australia Figure 11.1: Factors influencing the effective treatment of lung cancer

10 1 = Strongly disagree 9 10 = Strongly agree 8 7 6 5 4 3

Mean level of agreement 2 1 0

Variations in radiotherapy Treatment futility—patient Surgical intervention delays Patient reluctanceVariations to intravel palliative care Radiotherapy intervention delays Variations in surgical treatment Failure to follow up patients at risk Access to multi-disciplinary team Variations in oncological treatment Medical oncology interventionLong distance delays to specialist services Treatment futility—health professional

Access to guidance materials / specialist care

11.1 Open-ended Comment: 1. Ageist attitudes of medical practitioners. 2. It is difficult for me to comment on some of these options as I am a palliative care specialist and usually only involved once the focus of care becomes palliative. 3. Again it would mean taking that unique patient’s factors into consideration—often difficult to generalise in such situations. 4. Financial implications of travel & treatment. 5. Lack of intensive care beds in public. 6. TIME TO WAIT FOR MACHINE TIME IN RT INFLUENCES WHETHER WE BOTHER GIVING IT OR NOT OR PROCEEDING TO SYSTEMIC THERAPY. 7. Experience of those delivering the care with lung cancer. 8. Language / culture & information sharing. 9. I don’t have any experience in managing lung cancer. Question 11.2: In your practice setting/experience, do you have access to an MDT for the treatment of Lung Cancer?

Table 11.2: Statistical results

Frequency Percent No 24 16.0 Yes 87 58.0 Not answered 39 26.0 Total 150 100

Literature review and national consultation on factors impacting on lung cancer outcomes | 99 Figure 11.2: Practice / setting experience of access to MDT for treatment

100 90 80 70 60 50 40 Percentage (%) 30 20 10 0

No Yes

Not answered

Question 11.3: To what level do you think the following information should be included in clinical guidance material?

Table 11.3: Statistical results High risk population identification On-going monitoring for non- strategies results specific Managing comorbidities Determining prognosis Surgery suitability and risk operative Evidence based for recommendations diagnosis Evidence based for strategies Treatment Evidence based for strategies palliation of target Provision timelines Adjunctive symptom management strategies N Valid 108 109 108 107 108 109 108 107 106 108 Missing 25 24 25 26 25 24 25 26 27 25 Mean 7.11 7.39 6.84 7.43 7.31 7.80 7.90 7.77 7.75 7.65 Median 8.00 8.00 7.00 8.00 8.00 8.00 8.00 8.00 8.00 8.00 Std. Deviation 2.408 2.194 2.218 1.938 2.021 1.875 1.756 1.871 1.842 1.954 Percentiles 25 5.25 6.00 5.00 7.00 6.25 7.00 7.00 7.00 7.00 7.00 50 8.00 8.00 7.00 8.00 8.00 8.00 8.00 8.00 8.00 8.00 75 9.00 9.00 9.00 9.00 9.00 9.00 9.00 9.00 9.00 9.00

100 | Report on lung cancer in Australia Figure 11.3: Perceived importance for information to be included in clinical guidance material

10 1 = Strongly disagree 9 10 = Strongly agree 8 7 6 5 4 3

Mean level of agreement 2 1 0

Determining prognosis Managing comorbidities Provision of target timelines High risk population identification Surgery suitability and operative risk Evidence based strategies for palliation Evidence based strategies for treatment Adjunctive symptom management strategies Evidence based recommendations for diagnosis

On-going monitoring strategies for non-specific results

Question 11.4: If clinical guidance material were to be developed for the TREATMENT of lung cancer to whom would this information be best targeted?

Table 11.4: Statistical results

Frequency Percent General practitioners 96 85.7 Respiratory physicians 85 84.8 General physicians 66 58.9 Anaesthetists 5 4.5 Radiologists 24 21.4 Medical oncologists 90 80.4 Radiation oncologists 89 79.5 Thoracic surgeons 80 71.4 Cardiothoracic surgeons 61 54.5 Consumer material 59 52.7 Nursing and allied health professionals 62 55.4

Literature review and national consultation on factors impacting on lung cancer outcomes | 101 Figure 11.4: Health professionals best targeted for treatment related guidance material

100 90 80 70 60 50 40 Percentage (%) 30 20 10 0

Anaesthetists Radiologists General Physicians Consumer material General practitioners Medical oncologists Respiratory physicians Radiation oncologistsRadiation oncologists Cardiothoracic surgeons

Nursing and allied health professionals

11.4 Open-ended Comment: 1. Consumers should be characterised as multiple groups—patients, those with possible symptoms, families, carers. 2. Palliative care services. 3. Palliative care physicians—so they have information about latest evidence based treatments. 4. Palliative care physicians. 5. Palliative care. 6. Psycho-oncologists. Question 11.5: Would guidance materal around the evidence on the benefit of multidisciplinary teams in lung cancer TREATMENT be helpful in improving patient outcomes?

Table 11.5: Statistical results

Frequency Percent No 14 9.33 Yes 97 64.67 Not answered 39 26.0

Total 150 100

102 | Report on lung cancer in Australia Figure 11.5: Patient outcomes improved by guidance material on MDT benefit in lung cancer treatment

100 90 80 70 60 50 40 Percentage (%) 30 20 10 0

No Yes

Not answered

11.5 Open-ended Comment: 1. It depends on the standard of practice in individual centres. 2. This is the best way to establish the correct stage and to canvass therapeutic options. 3. Am currently researching this very question with our lung mdt and hope to have presentations at RANZCR and COSA this year. 4. The evidence of MDT benefit needs to be first generated. 5. Those clinicians not using multiD aren’t likely to change practice.

Literature review and national consultation on factors impacting on lung cancer outcomes | 103 Section 12: Improving treatment of lung cancer

Question 12.1: In your opinion are difficulties accessing MDTs impacting on outcomes of lung cancer?

Table 12.1: Statistical results

Frequency Percent No 40 26.67 Yes 67 44.67 Not answered 43 28.66 Total 150 100

Figure 12.1: Do MDT access difficulties impact on lung cancer outcomes?

100 90 80 70 60 50 40 Percentage (%) 30 20 10 0

No Yes

Not answered

Question 12.2: Do you consider the following health professionals should be part of the MDT to plan and monitor TREATMENT

Table 12.2: Statistical results

YES NO Medical oncologist 100.0 0.0 General practitioners 81.0 19.0 Respiratory physicians 95.3 4.7 Radiation oncologists 100.0 0.0 Palliative care physicians 91.0 9.0 Surgeon 97.0 3.0 Care coordinator / Lung cancer nurse 98.2 1.8 Allied health professionals 85.0 15.0

104 | Report on lung cancer in Australia Figure 12.2: MDT included health professionals to plan and monitor treatment

Yes No 100 90 80 70 60 50 40 30

Respondent agreement (%) 20 10 0

Surgeon

Medical oncologist General practitioners Respiratory physiciansRadiation oncologists Palliative care physicians Allied health professionals

Care coordinator / lung cancer nurse

12.2 Open-ended Comment: 1. Pathologists, nuclear medicine specialists. 2. Data manager. 3. I am not familiar with multidisc teams in treatment of lung ca…only in dx and planning of rx. Also incl radiologist. psychologist. social work ? Letter to GP + involve GP by phone for their pts only?? 4. Psycooncologists. 5. Pathology, radiology & nuclear medicine. 6. Radiologist—key in diagnosis not only from an imaging/staging point of view but also tissue biopsy and treatment (i.e. Radiofrequency ablation) 7. Dietician social worker. 8. Radiologist. 9. The feasibility is the issue of GP and to a certain extent allied health involvement. 10. GP would be good… 11. Depending on patient need.

Literature review and national consultation on factors impacting on lung cancer outcomes | 105 Section13: Improving the treatment of lung cancer

Question 13.1: What are some of the reasons you do not access a multidisciplinary team for the TREATMENT of lung cancer?

Table 13.1: Statistical results

Percent Frequency I am not convinced of the benefit of a multidisciplinary team 3.3 2 The incentive to participate in a multidisciplinary team is not sufficient 15.0 9 There is no multidisciplinary team in my area 25.0 15 I am unaware of how to access a multidisciplinary team 20.0 12 The distance to travel limits me accessing a multidisciplinary team 26.7 16 The location of specialists across public and private sectors challenges the conduct of multidisciplinary team meetings 55.0 33 The time involved limits me participating in a multidisciplinary team 33.3 20

Figure 13.1: Reasons for variation in MDT access for treatment

100 90 80 70 60 50 40 30

Respondent agreement (%) 20 10 0

Not MDT in area

Distance limits MDT access Time limits MDT involvement Not convinced of MDT benefit Unaware of how to access MDT MDT particiaption not incentivised

Public/private specialist spread complicated MDT

13.1 Open-ended Comment: 1. Multidisciplinary pathways for lung cancer including palliative care options. 2. ?Lung cancer hotline for each area that links to MDT. 3. More lung cancer nurse coordinators who will work effectively within the mdt, local gp services and in educating the wider public. At present there are 7 lung cancer nurses in NSW…some positions are shared with other tumour groups.

106 | Report on lung cancer in Australia 4. Guidelines are useful but do not cover every unique situation and all variables—the point where a multi-disciplinary approach is so useful. 5. Provide individual mentors. 6. More specialist doctors in regional centres (program not accepting dots). 7. This information needs to be strongly focused to communities of people with English as a second language. Question 14.1: If clinical guidance material were to be developed where do you consider that this would have the greatest impact?

Table 14.1: Statistical results

Outcomes measurement

Early MDT MDT of quality of diagnosis Diagnosis Treatment composition composition lung cancer investigations and staging strategies at diagnosis for treatment care N Valid 107 107 106 105 106 106 Missing 26 26 27 28 27 27 Mean 7.47 7.53 7.48 6.49 6.62 7.32 Median 8.00 8.00 8.00 7.00 7.00 8.00 Std. Deviation 2.328 2.011 1.858 2.198 2.265 1.983 Percentiles 25 7.00 6.00 6.00 5.00 5.00 6.00 50 8.00 8.00 8.00 7.00 7.00 8.00 75 9.00 9.00 9.00 8.00 8.00 9.00

Figure 14.1: Perceived area of clinical guidelines greatest impact

10 1 = Low Impact 9 10 = High Impact 8 7 6 5 4 3

Mean level of Agreement Mean level of 2 1 0

Treatment strategies Diagnosis and Staging

Early diagnosis investigations MDT composition at diagnosisMDT composition for treatment

Outcomes measurement of quality of lung cancer care

Literature review and national consultation on factors impacting on lung cancer outcomes | 107 Question 14.2: In your opinion, what factors are likely to have the greatest reduction in practice variation in lung cancer treatment in Australia? 14.2. Priorities:

PRIORITY FACTOR COUNT Priority 1 General practitioner education and awareness e.g. recognition of symptoms 72 Priority 2 Referral and access to MDTs to assist in diagnosis and tumour staging 65 Priority 3 Guidance material for the use of investigation and diagnosis of lung cancer 52 Priority 4 Greater public awareness of lung cancer, diagnostic strategies and therapies 51 Priority 5 Monitoring of patients with ongoing symptoms when investigations do not confirm lung cancer 37 Priority 6 Guidelines for MDTs specific to lung cancer to minimise variation 36 Priority 7 Greater access to targeted tumour and staging procedures 26 Priority 8 Improving communication strategies across the public and private sector 21 Increasing awareness of the capacity of chemotherapy and radiotherapy to manage symptoms and Priority 9 improve quality of life 20 Priority 10 Monitoring of quality indicators of such as time from diagnosis to treatment 16 Priority 11 Better incentives for the private sector to participate in MDTs 15 Priority 12 Promotion of lung cancer specialists in health specialties, such as surgery and oncology 14 Priority 13 Guidelines on appropriateness of surgery 9 Priority 14 Access to information identifying the location of lung cancer specialists 8 Priority 15 Guidelines on appropriateness of chemotherapy 8 Priority 16 Algorithms to calculate co-morbidity risk for surgery and treatment 6 Priority 17 Guidelines on appropriateness of radiotherapy 4 14.2. Additional Recommendations / comments relating to decreasing treatment variation 1. We need guidelines for follow up of post op patients from lung cancer as well as pts having radical treatment. 2. Wide availability of private health care means patient can choose to go to opinions they think are right, even when it is not. 3. Provide videoconf/ teleconf facilities for rural specialist to attend metro meetings if no meeting in their area. allow GP’s to teleconf in just for their pts. 4. The key impact will be a reference point for legal issues. 5. The guidelines on diagnosis and treatment are already available. The main problem in my area is access to services such as diagnostic tests, medical oncologists, chemotherapy and radiotherapy. 6. Data and audit most important. Need to document valid reason for any lung cancer patient NOT being treated according to guidelines. 7. Having a coordinator of the MDT as a funded position with appropriate administrative budget and support. 8. Not sure. 9. Better equality of healthcare access for those from lower socioeconomic groups & regional & rural patients. 10. Need to have the pathway agreed and available and publicised to public, GP and specialists. 11. Inclusion of psycho-social and palliative specialists on the multi-disciplinary team.

108 | Report on lung cancer in Australia APPENDIX 7: THEMATIC ANALYSIS FROM EXPERT PARTICIPANTS Themes Illustrative quotes System Ability to provide and Need for coordination and “multiple providers, multiple investigations can lead to delays coordinate lung cancer communication and monitoring of in diagnosis” (Medical oncologist) services outcomes “a team approach is what is necessary” (Surgeon) Need to coordinate public and private “inordinate, unnecessary delays occur” (Medical Oncologist) health care settings “being able to go to a private hospital fast tracked [spouse] Distance from specialist centres treatment (Consumer) impacts on access “people can just get lost in the system” (Dietician) Increasing specialisation increases the emphasis on specialist centres “There is a need for a carrot and stick approach [to monitor and improve outcomes” (Respiratory Physician) Multidisciplinary teams seen as integral “In order to obtain Medicare reimbursement there should Navigating the system is challenging for be demonstration that a physician has accessed a patients and general practitioners multidisciplinary team” (Medical Oncologist) “it is a bit hit and miss how quickly you get into the system” (Care Coordinator) “Network systems work well to coordinate care” (Policy) “Need for systematic follow-up of abnormal chest—Rays” (Radiologist) “Up to 48% of the surgery happens in the private sector” (Policy) Provider Capacity to provide lung General practitioners have minimal “amongst some clinicians there is a perception of nihilism cancer services exposure to lung cancer regarding treatment decisions” (Medical Oncologist) Workforce shortages “No shortage of surgeons—people have to be prepared to travel” (Thoracic Surgeon) Increasing need for specialisation “Physicians not switched on to lung cancer” (Medical Perception of greater accessibility Oncologist) through the private sector “Comorbidities and age can result in failure to consider Views of lung cancer management are surgery” (Thoracic Surgeon) not always up to date “I just don’t see lung cancer in my practice and so I guess I am less switched onto it” (General Practitioner) “lots of information from non-experts” (Palliative care physician) “Options are not always portrayed accurately to the patient” (Respiratory physician)

Literature review and national consultation on factors impacting on lung cancer outcomes | 109 Patient Patient Stigma and shame can impact on the “the first month your world is turned upside down… it was decision to access treatment horrendous” (Consumer) Health seeking behaviours and treatment adherence Patient co-morbidities influence the “Dealing with the diagnosis was the hardest thing” decision to treat (Consumer) Distance and costs can impact on “Patients present too late and sometimes they are already accessing treatment expecting the answer because they see it as smoking related” (General Practitioner Aboriginal Medical Service)

“lung cancer is not a sexy cancer” (Consumer) “Need for more guidelines and marketing to patients and families” (Dietician) “Smoking—it’s the first thing they always ask about…talk about sticking the knife in and twisting it” (Consumer) “The distance has a big impact on patients and their carers [willingness to access treatment] (Lung cancer nurse) “Patients are often frustrated by late diagnosis… and have heard bad things [from other consumers] about treatment” (Counsellor) “Still a lot of racism in the system…it puts people off getting treatment…people feel shamed” (Aboriginal Health Worker) “At 36 you are going to do everything [access treatment] when you are 70 or 80 you are going to think differently” (Consumer representative)

110 | Report on lung cancer in Australia APPENDIX 8: REFERENCES 1. Cancer Australia, A National Cancer Data Strategy for Australia. 2008, Cancer Australia: Canberra. 2. Australian Institute of Health and Welfare, Cancer in Australia: an overview, 2008. Cancer series. Vol. 46. 2007, Canberra: Australian Institute of Health and Welfare. 3. Tracey, E., et al., Cancer in New South Wales: Incidence and Mortality 2007. 2009, Cancer Institute NSW: Sydney. 4. AIHW, A.I.o.H.a.W., GRIM (General Record of Incidence and Mortality): Lung Cancer (ICD-10 C33,34), ed. D.P. Jelfs. 2008, Canberra: AIHW. 5. Australian Institute of Health and Welfare, et al., Cancer Survival and Prevalence in Australia: Cancers diagnosed 1982–2004, in Cancer Series. 2008, AIHW: Canberra. 6. Cancer Institute NSW, Lung cancer in New South Wales. 2006, Cancer Institute NSW Sydney. 7. Anti-Cancer Council of Victoria. Cancer Epidemiology, C., Lung cancer, in Canstat. 2002: Melbourne. p. 1–16. 8. Youlden, D.R., et al., The International Epidemiology of Lung Cancer: geographical distribution and secular trends. Journal of Thoracic Oncology, 2008. 3: p. 819–31. 10.1097/ JTO.0b013e31818020eb [doi] 01243894-200808000-00004 [pii] 9. Cancer Council Western Australia, Western Australian Cancer Statistics, 2007. 2007, Cancer Council Western Australia: Perth. 10. South Australian Cancer Registry. Major Cancers in South Australia 1977–2005. Available from: http://www.health.sa.gov.au/pehs/07-major-cancers-77-05/cancer-major-sites-77-05.htm. Accessed March 2010 11. Dalton, M., et al., Cancer in Tasmania: Incidence and Mortality 2006. 2009, Menzies Research Institute and Tasmanian Cancer Registry: Hobart. 12. Zhang, X., et al., Cancer incidence and mortality, Northern Territory 1991–2005. 2008, Northern Territory Department of Health and Community Services: Darwin. 13. ACT Cancer Registry, A.H., Cancer in the ACT Incidence and Mortality 2009, in Health Series. 2009, ACT Government: Canberra. 14. Population Health Research Centre ACT Health, Health Status of Women in the ACT. 2008, ACT Government: Canberra. 15. South Australian Cancer Registry, Cancer in South Australia 2006 with projections to 2009: A report on the incidence and mortality patterns of cancer. Cancer Series Number Twenty Nine. Vol. 29. 2008, Adelaide: South Australian Department of Health. 16. Dalton, M., et al., Cancer in Tasmania: 20 year report. 2002, Menzies Research Institute and Tasmanian Cancer Registry: Hobart.

Literature review and national consultation on factors impacting on lung cancer outcomes | 111 www.canceraustralia.gov.au All information in this publication is correct as of August 2010 D0161 August 2010 D0161 August