Journal of the New Zealand Medical Association Vol 133 | No 1522 | 25 September 2020 Equity is the new black—and black lives matter

New Zealand doctors and euthanasia— legal and practical considerations of the End of Life Choice Act

Knowledge and perspectives about the use of cannabis as a medicine: a mixed methods observational study in a cohort of New Zealand general practice patients

Management of personal Computers, confounding, The association between protective equipment clusters, consent, cost, New Zealand adolescents’ in New Zealand during COVID and consultation: normative perceptions the COVID-19 pandemic: how the Health and of pornography use report from the Disability Code impedes and their frequency of Auditor-General the learning health system pornography use Publication Information published by the New Zealand Medical Association

NZMJ Editor NZMA Chair Professor Frank Frizelle Dr Kate Baddock

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NZMJ 25 September 2020, Vol 133 No 1522 ISSN 1175-8716 © NZMA 2 www.nzma.org.nz/journal CONTENTS

EDITORIAL 52 9 Are over-the-counter s h oil Could comprehensive cancer supplements safe, effective and centres improve cancer outcomes accurate with labelling? Analysis and equity in New Zealand? of 10 New Zealand s h oil Murray Brennan, Frank Frizelle supplements Julia J Rucklidge, Ian C Shaw 15 Equity is the new black—and black 63 lives matter Hui: a partnership in practice in Curtis Walker familial hypercholesterolemia Jocelyne Benetar, Tara Elville, ARTICLES Helen Wihongi, The Whanau 18 71 How is dementia portrayed in Lessons from a system-wide New Zealand newsprint media? response to a measles outbreak, Causes, effects and moral Canterbury, February–April 2019 evaluation Daniel Williams, Meik Dilcher, Sarah Cullum, Rachael Simpson, Hongfang Dong, Bridget Lester, Farzana Gounder Kerry Marshall, Ramon Pink, 30 Debbie Smith, Jimmy Wong Patient characteristics and 84 predictors of completion of Medication dispensing for a pulmonary rehabilitation attention-deficit/hyperactivity programme in Auckland, disorder to New Zealand youth New Zealand Stephanie D’Souza, Nicholas Bowden, Sarah Candy, Nicola Jepsen, Sheree Gibb, Nichola Shackleton, Christin Coomarasamy, Jonathan Curry, Richard Audas, Sarah Hetrick, Grace Dodson, Joe Pomelile, Barry Taylor, Barry Milne Mitchel Versey, Julie Reeve 96 42 Knowledge and perspectives about A feasibility study investigating the use of cannabis as a medicine: the impact of a dietitian-led low a mixed methods observational in fermentable oligosaccharide, study in a cohort of New Zealand disaccharide, monosaccharide general practice patients and polyols diet group education Karen Oldfield, Allie Eathorne, programme with irritable Ingrid Maijers, Richard Beasley, bowel syndrome Alex Semprini, Irene Braithwaite Dorcas Chan, Paula Skidmore, 112 Leigh O’Brien, Sally Watson, Why dizziness is likely to increase Richard Gearry the risk of cognitive dysfunction and dementia in elderly adults Paul F Smith

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VIEWPOINTS CLINICAL CORRESPONDENCE 128 167 A pragmatic diagnostic approach Co-infection of in™ uenza A with to myocardial infarction with non- Staphylococcus aureus causing obstructive coronary arteries bacterial arthritis in a child Ammar J Alsamarrai, Yahya Amar Mari, Syed Ahmed Zaki, Jocelyne R Benatar, Eun Soo Chung, Ahmed Bashir Yagan Jithendra B Somaratne 172 133 Unilateral pulmonary opacity with The assessment of testamentary herniation of contralateral lung to capacity same side Jane Casey, Anthony Grant Prem Parkash Gupta, Dipti Agarwal, 138 Chandra Kumar, Saumya Gupta Computers, confounding, LETTERS clusters, consent, cost, COVID and consultation: how the Health 177 and Disability Code impedes the Health effects of ™ uoridation on learning health system IQ are unproven Ken W Perrott Mark Webster, Ralph Stewart 144 180 Management of personal protective The association between equipment in New Zealand during New Zealand adolescents’ the COVID-19 pandemic: report normative perceptions of from the Auditor-General pornography use and their Elizabeth Fenton frequency of pornography use Damian Scarf, Benjamin C Riordan, 149 Taylor Winter New Zealand doctors and euthanasia—legal and practical 183 High time to decide considerations of the End of Life David B Menkes, Nicholas Hoeh Choice Act Bruce CH Tsai, David B Menkes 100 YEARS AGO 161 185 A model respiratory personal Politicians and Physicians protective programme for the New Zealand healthcare industry Chris Walls, Geraint Emrys, Siobhan Gavaghan, Des Gorman, David McBride, Dave McLean

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How is dementia portrayed in New Zealand newsprint media? Causes, effects and moral evaluation Sarah Cullum, Rachael Simpson, Farzana Gounder Dementia in New Zealand is expected to triple in the next 30 years at which point 170,000 people and their families will be affected. The media play an important role in not only disseminating information to the public but also shaping opinions and behaviours towards families living with dementia. We examined New Zealand’s three largest daily newspapers and found that dementia is still largely portrayed from a victimhood viewpoint. Up to 40% of dementia is potentially preventable and positive media representation could empower the public regarding attitudes towards dementia. Patient characteristics and predictors of completion of a pulmonary rehabilitation programme in Auckland, New Zealand Sarah Candy, Nicola Jepsen, Christin Coomarasamy, Jonathan Curry, Grace Dodson, Joe Pomelile, Mitchel Versey, Julie Reeve Pulmonary rehabilitation (PR) for people living with a long-term respiratory illness is an effective intervention which can reduce symptoms and improve health-related quality of life. Despite the compelling evidence for this intervention, attendance and completion of PR worldwide is low. Our study identifi ed predictors to completion of a PR programme in Counties Manukau, New Zealand. Being of an older age group, having a higher exercise capacity and of European ethnicity was found to be independent predictor of completion in this cohort. Future service improvements in the provision and delivery of PR programmes in New Zealand need to ensure we are providing accessible options for younger participants, supporting those with lower exercise tolerance and ensure services are engaging for all ethnicities. A feasibility study investigating the impact of a dietitian-led low in fermentable oligosaccharide, disaccharide, monosaccharide and polyols diet group education programme with irritable bowel syndrome Dorcas Chan, Paula Skidmore, Leigh O’Brien, Sally Watson, Richard Gearry Many people have irritable bowel syndrome (abdominal pain with diarrhoea, constipation). Treatments are limited but a special diet called low FODMAP diet can help. Usually a dietitian needs to teach this one on one with the patient, but this study has shown that it is feasible to teach this in a group setting. Are over-the-counter sh oil supplements safe, effective and accurate with labelling? Analysis of 10 New Zealand sh oil supplements Julia J Rucklidge, Ian C Shaw The study shows that 90% of the most popular fi sh oil supplements sold in New Zealand are true to label based on the stated capsule omega fatty acid content. All of the products studied indicated benefi ts across heart, brain and joint health. Based on studies published in scien- tifi c journals, 30% of the products would result in benefi ts across heart, brain and joint health when taken at the top dose recommended on the label. Mercury was not found in any of the samples analysed; therefore, even if some of the products might not confer health benefi ts at the recommended doses, they are all safe to consume.

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Hui: a partnership in practice in familial hypercholesterolemia Jocelyne Benetar, Tara Elville, Helen Wihongi, The Whanau Genetic mutations causing very high cholesterol levels that lead to premature heart disease is the most common genetic disorder and occurs in 1 in 250 people. The incidence in Māori is not known and New Zealand has no systematic way of screening and managing these patients. This paper describes a large whanau who have endured many tangihanga as a result of premature heart disease caused by a gene mutation. It describes establishing a partnership with whanau so they hold all the information on this disorder to empower all members, ensuring appropriate screening and treatment no matter where they live. Lessons from a system-wide response to a measles outbreak, Canterbury, February–April 2019 Daniel Williams, Meik Dilcher, Hongfang Dong, Bridget Lester, Kerry Marshall, Ramon Pink, Debbie Smith, Jimmy Wong New Zealand is at ongoing risk of measles outbreaks, due to sub-optimal vaccination coverage. Canterbury experienced a measles outbreak from February to April 2019. Canterbury’s whole- of-health-system response helped contain the outbreak to 38 cases. A systematic primary care-based measles vaccination catch-up campaign could prevent future measles outbreaks. Medication dispensing for attention-deficit/hyperactivity disorder to New Zealand youth Stephanie D’Souza, Nicholas Bowden, Sheree Gibb, Nichola Shackleton, Richard Audas, Sarah Hetrick, Barry Taylor, Barry Milne Over a 10-year period, medication dispensing prevalence for attention-deficit/hyperactivity disorder (ADHD) almost doubled in young New Zealanders aged 1–24 years. Medication was more common in males and in those between 7–17 years old. Strong socioeconomic differ- ences in medication were not apparent when looking at the youth population as a whole but were more noticeable within specific ethnic groups, with different patterns observed across ethnic groups. Dispensing prevalence increased as area deprivation level increased in Euro- peans only, but the opposite trend was generally apparent in Pasifika youth. These results suggest that healthcare disparities may exist within certain ethnic groups. Knowledge and perspectives about the use of cannabis as a medicine: a mixed methods observational study in a cohort of New Zealand general practice patients Karen Oldfield, Allie Eathorne, Ingrid Maijers, Richard Beasley, Alex Semprini, Irene Braithwaite This study explored what a group of GP patients knew and had experienced regarding the use of cannabis as a medicine. The majority of patients reported being comfortable discussing medicinal cannabis use with their doctors and were willing to use prescribed medicinal cannabis products. When considering their own medical conditions, just under half thought that medicinal cannabis may be helpful; primarily for pain relief. Few patients had talked to their doctors regarding medicinal cannabis use. Patients have expressed that they would like information about medicinal cannabis from their doctors that is in keeping with what would be conveyed regarding regular prescribed medications.

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Why dizziness is likely to increase the risk of cognitive dysfunction and dementia in elderly adults Paul F Smith Dizziness related to inner ear dysfunction of the balance organs (the ‘vestibular system’) causes memory impairment, independently of hearing loss, by disrupting the function of neurons in brain regions responsible for remembering places in the environment. It is therefore possible that dizziness related to vestibular dysfunction increases the risk of dementia, including Alzheimer’s disease. Vestibular rehabilitation, a non-invasive form of exercise, may reduce the risk of dementia. A pragmatic diagnostic approach to myocardial infarction with non-obstructive coronary arteries Ammar J Alsamarrai, Jocelyne R Benatar, Eun Soo Chung, Jithendra B Somaratne A heart attack is usually caused by a blockage in the arteries that supply the heart. However, some people who suffer a heart attack have rather normal looking heart arteries. In these cases, it can be diffi cult to fi gure out what caused the heart attack. We propose a simplifi ed algorithm (originally designed by the American Heart Association) to help heart specialists decide which tests to do in patients with heart attacks and normal looking heart arteries. The assessment of testamentary capacity Jane Casey, Anthony Grant People are living longer with chronic medical conditions including cognitive impairment and with increased wealth. Recent New Zealand Court decisions will likely result in more demand for contemporaneous medical assessments of the capacity to make a will. This paper outlines the clinical assessment and the legal test. Careful assessments could protect the older adult and minimise the risk of a contested will after death. Computers, confounding, clusters, consent, cost, COVID and consultation: how the Health and Disability Code impedes the learning health system Mark Webster, Ralph Stewart The Health and Disability Code, resulting from the Cartwright Inquiry and protecting patient rights, precludes any research without participant consent. Comparative effectiveness studies—a cornerstone of the learning health system—compare well-established drugs/proce- dures/practices used for the same condition. Randomisation is the only way to ensure that the comparison is reliable. Some comparative effectiveness studies cannot practicably be under- taken with participant consent. The Code needs carefully considered updating, to improve patient heathcare delivery.

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Management of personal protective equipment in New Zealand during the COVID-19 pandemic: report from the Auditor-General Elizabeth Fenton In June 2020 the Offi ce of the Auditor-General released its report on the management of personal protective equipment (PPE) in New Zealand during the COVID-19 pandemic. This viewpoint article addresses three issues of ethical concern raised in the report: inadequate stock, inequity and complacency. It highlights the importance of healthcare worker trust in the institutions they work for, and investment in a robust public health system. Acting on the report’s recommendations is a critical step in strengthening New Zealand’s preparedness for future public health crises. New Zealand doctors and euthanasia—legal and practical considerations of the End of Life Choice Act Bruce CH Tsai, David B Menkes New Zealanders will be voting on the End of Life Choice Act in the upcoming referendum in October. This paper examines what this would mean for doctors, patients and families based on experience in countries where euthanasia is already legal. By putting the New Zealand Act in context and comparing it with legal frameworks overseas, we identify what doctors and others need to know. We also highlight issues that still need to be worked through and clarifi ed to ensure that end-of-life choices are informed, settled and free from coercion, and provide examples that may assist determination of this. A model respiratory personal protective programme for the New Zealand healthcare industry Chris Walls, Geraint Emrys, Siobhan Gavaghan, Des Gorman, David McBride, Dave McLean In the absence of advice from the workplace regulator these Doctors with workplace expe- rience in healthcare offer a model respiratory protection programme for healthcare institutions to consider and adapt to their requirements.

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Could comprehensive cancer centres improve cancer outcomes and equity in New Zealand? Frank Frizelle, Murray Brennan

n the midst of the present Covid pan- 52,000, or 142 people a day.4 The cancer demic it is easy to forget that we have an burden is not evenly distributed in any Iongoing cancer pandemic that will not be community with a disproportioned effect ameliorated by a generic vaccine. Globally, on indigenous people and those on lower based on 2013–2015 data approximately 40% incomes. In New Zealand, Māori are 20% of men and women will be diagnosed with more likely to get cancer than non-Māori, cancer during their lifetime, meaning that and nearly twice as likely as non-Māori to most of us can be expected to be affected by die from cancer.5 1 cancer, either directly or indirectly. Internationally, survival trends for cancer In New Zealand, cancer is now the leading are generally improving, with New Zealand’s cause of death, with cancer deaths making fi ve-year survival rates, similar to those of up 30.2% of all deaths, ischaemic heart the US, Canada, Australia, Finland, Iceland, disease 15.8% and cerebrovascular disease Norway and Sweden.7 New Zealand does 7.8% in 2015.2 More people are developing have a lower cancer survival compared to cancer in New Zealand, mainly because our neighbour Australia, and this difference the population is growing and ageing. In is increasing.8,9 For example, Australia 2016, 24,086 people in New Zealand were showed signifi cant improvements (6% diagnosed with cancer; an increase of 21% in men, 3% in women) in comparing the since 2007.3 By 2040, the number of cancer periods 2000–05 and 2006–10, while New diagnoses is predicted to double to around Zealand had only a 1.8% increase in cancer

Figure 1: Provisional New Zealand cancer mortality rates, 2016, selected cancers, Māori vs non-Māori, non-Pacifi c.6

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Figure 2: Provisional New Zealand cancer registration rates, 2017, selected cancers, Pacifi c vs non- Pacifi c, non-Māori.7

survival in men and 1.3% in women.9 The likely to, due to healthcare-related factors fi ve-year survival rates for these common such as early diagnosis and optimum cancers for Australia and New Zealand are, treatment.9 This demonstrates that our respectively: colorectal: 70.9% (Australia), survival rates from cancer are now falling 65% (New Zealand); lung: 19.4%, 15.3%; behind those of our comparable countries breast (women) 89.5%, 87.6%; prostate: and has not been improving at the same rate 94.5%, 90.3% and melanoma: 92.9%, 91.8%, as elsewhere.7–9 The impact as measured by from 2000–05 to 2006–2010. Differences in disability adjusted life years lost by cancer is cancer survival trends are thought most illustrated below.

Figure 3: Age-standardised disability-adjusted life years lost per 100,000, all neoplasms, both sexes, selected countries, 1990–2016.6

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In response to the increasing demand for and delivery of cancer care is needed cancer treatment, the Ministry of Health has to be considered with the integration of developed the New Zealand Cancer Action research and especially clinical trials into Plan 2019–2029 to provide a pathway to clinical practice in a manner that promotes improve cancer outcomes.6 On 1 December support. Māori involvement at all levels is 2019, the Government launched the Cancer critical to improving the cancer outcomes Control Agency (Te Aho o Te Kahu) to lead for all New Zealanders. 10 the implementation of this plan. Key The present model has led us to where priorities for the agency include providing we are today and continuing the delivery accountability, coordination of various care in the same model will likely keep the agencies involved in cancer, and working to disparity in outcomes growing. A change, implement the Cancer Action Plan. Te Aho not just in philosophy (which we have seen) o Te Kahu has been charged with working but in the model we use to deliver care is closely with people impacted by cancer, required. The integration of clinical practice including their whānau and healthcare and research is well established as providing professionals, as well as with Māori and better outcomes across a range of outcome Pacifi c leaders to ensure that they inform measures, including survival with compre- them on how best engage with them to meet hensive cancers centres across the world. their needs. The Comprehensive Cancer Centre (CCC) The New Zealand Cancer Action Plan model, initially established by the US 2019–2029 sets out the four main goals Government was developed to improve required over the next 10 years to ensure cancer outcomes. A hallmark of a CCC— 6 better cancer outcomes: comprehensive and multidisciplinary • New Zealanders have a system that care—means that specialists from different delivers consistent and modern medical disciplines collaborate to plan, cancer care evaluate and deliver accurate cancer-spe- • New Zealanders experience equitable cifi c diagnosis treatment, with integration cancer outcomes of basic and clinic research pushing to improve outcomes. CCCs are places of excel- • New Zealanders have fewer cancers lence for cancer management and have • New Zealanders have better cancer now been adopted at least in part in most survival, supportive care and developed countries. In the UK The Maggie end-of-life care. cancer centres have developed as a charity This plan has a strong focus on achieving independent of the NHS, yet linked to the equity of outcomes and contributing to provision of care to provide the support and wellness for all, and recognises different care needed to help patients with cancer. people with different levels of advantage This culturally appropriate integration of require different approaches and resources comprehensive multidisciplinary clinical to get equitable health outcomes. The plan care, research and psychosocial support is states that it is guided by four overarching a model that may meet the needs of New principles; Zealand to achieve its cancer outcome goals • Equity-led and help close both the outcome and the equity gap. • Knowledge-driven Below, New Zealand’s most famous cancer • Outcomes-focused surgeon (Professor Sir Murray Brennan) tells • Person and whānau-centred. his perspective of working in such a centre Given that Māori have the poorest overall and how this might work in New Zealand. health status in New Zealand, have higher rates of most cancer and worse outcomes From a New York perspective I have spent almost 40 years at one of the for most stages than others and are signifi - most visible cancer centres in the world, cantly disadvantaged in terms of health Memorial Sloan Kettering Cancer Center inequities, it is essential that we ensure in New York City. If I did not believe in the the rights and meet the needs of Māori mission, the achievements and the rele- people; new approaches to the diagnosis vance, I would never have stayed.

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In the 1880s, J Marion Sims was the person conjecture it was the relative ill health of who originally proposed the idea of a cancer Peter MacCallum from exposure to nitrogen centre in New York City: “…a cancer hospital mustard gas in 1918 that led him to a career (should be built) on its own foundation, in research and pathology. Ironically, it was wholly independent of all other hospitals… nitrogen mustard that was the fi rst cancer Its medical board ought to be men who go in therapeutic used in the management of to it with zeal, determined not only to give leukaemia and lymphoma because of its temporary relief to human suffering, but hematopoietic toxicity. to do something toward discovering better What are the real and potential benefi ts methods for treatment…” of such a disease-specifi c focus? The A visionary, Sims’ interest grew from the original mission of excellence in clinical diffi culty of women with gynaecological care, research and education are embodied cancer to be treated in general hospitals in in the MSK logo—Research, Treatment, the mid-to-late 19th century. No paragon, Education. For MSK this statement has been Sims was a controversial fi gure having left recently modifi ed to read “To lead in the New York at the time of the American Civil prevention, diagnosis, treatment, and cure War to avoid fi ghting for his home in the of cancer through programs of excellence in North or his birthplace in Alabama. Immi- research, education, outreach, and cost-ef- nently successful in Europe, he returned to fective patient care” to refl ect and address New York with zeal for his work. President the socioeconomic problems of healthcare of the American Medical Association, he was in the US. honored by his peers and a statue erected The pyramidal building of a cancer in his name in Central Park. This statue was centre begins with integrated patient care, recently removed as it represented a symbol integrated from diagnosis to demise. Few of a man who performed surgery on African appreciate how diffi cult it is to embrace the American slaves in the 1840s without idea that cancer is not one but a myriad of consent and in the absence of anaesthe- diseases. When asked how many cancer sia—a confl icting story of competing ethics. types there are, I answer obliquely that “one Sims died in 1883 aged 70, before the day there will be as many different cancers Memorial Hospital was opened in 1884 with as there are different people with cancer.” benefaction from the rich and famous of the With rapid evolution and characterisation day, including John Jacob Astor III and his of the human genome we know the genetic wife Charlotte, Elizabeth H Cullum, John E variation that calls us each a person. With Parsons and other prominent New Yorkers. molecular diagnosis we know, at least in But what has happened in the 136 years part, the ever-evolving genetic defi nition of since the opening of what is now MSKCC? each cancer, and as we put your cancer into The buildings and the staff have proliferated you, we have that unique identifi er. But that across the upper East Side and on out to demands a high degree of research which, the suburbs, with a total staff approaching you will say, belongs in the basic labs of 20,000 with 1,000 volunteers, and an any university or research facility. I would education programme that embraces almost argue that that challenge can be admirably 2,000 residents and clinical fellows, and met by juxta-positioning the patient and the an operating revenue which would have science in the one place. “Know then thyself, reached $5 billion in 2020 had not COVID-19 presume not God to scan; The proper study 11 brought that to a halt or at least a slow walk. of mankind is man.” Across the US there are 71 cancer centres, Again, that is no reason for a cancer centre 51 comprehensive, 13 clinical and seven alone. Any competent clinical facility with basic—a cancer centre for every 2.5 million a translational research arm can do that. people, a comprehensive centre for every In many places that is how an institution, six million people. Australia has an admi- clinic, hospital or university division begins rable institute built on clinical care—the and evolves into a designated cancer centre. Peter MacCallum Cancer Centre. Founded Outcomes for cancer patients treated at by Peter MacCallum, a Scottish-born varying sites have been long studied.12 A oncologist raised in childhood by his New multitude of studies have demonstrated that Zealand father in Christchurch! One might for surgical outcomes, volume, especially for

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complex cancers, improves with centrali- Cancer centres cannot survive only on sation.13,14 Not all cancer patients will benefi t integrated cancer care; they must provide from referral centres; such a concentration innovation and progress. That cannot occur is neither necessary nor realistic. We are in without sound basic and translational the process of deciding how many is enough research and opportunities to educate the for complex cancers to get results compa- brightest and the best. rable to those best available. The rapid adoption of telemedicine But do cancer centres deliver better brought about by the Covid-19 pandemic comprehensive cancer care, better long-term has opened a new opportunity for cancer survival outcomes? centres. Clinical trials and clinical research It is now clear that not only short-term are no longer necessarily confi ned to cancer but long-term survival can be improved centres. It is progressively clear that the if patients are treated from diagnosis at former mandatory relocation to a centre focused referral cancer centres.15,16 to participate in a clinical trial may not be necessary. With telehealth, clinical trial And what of the benefi ts in research oversight will allow trials to be extended and education? Research, both clinical with remote patient participation. That and basic, are integral to any progress in requires a centralised cancer centre infra- the management of the cancer patient. structure but could portent an option for Without a fundamental understanding of New Zealand to participate and initiate the etiology, initiation, progression and the clinical trials on a national and interna- metastatic process, ultimate control and tional platform. cure is impossible. Financing of all cancer centres is a chal- New Zealand has a remarkable resource lenge. The Peter MacCallum is Australia’s in their National Health Care data bases. The only public hospital dedicated to cancer utilisation of such a data base is a potential care. In the US, cancer centres rely predom- rich source for identifying variations in the inately on revenue from patient care, delivery of healthcare by variables such as albeit often private insurance rather than site, race and ethnicity. As in other societies, federal support by programmes such as the use of such data is often limited not Medicare and Medicaid. All centres rely by the value of the information but by the on philanthropic and competitive grant political ramifi cations of transparency. support to advance their research mission. The newly formed New Zealand National This is different from what I under- Cancer Programme is focused on “access to stand of the New Zealand health system; high quality screening and care”. Without however, support from research grants and access to screening and early diagnosis for healthcare are not that different. When I potential cure it is hard to improve cancer look at our own fi nancial base, with a $4.9 outcomes for all citizens. The focus by the billion operating revenue, 80% is derived New Zealand National Cancer Programme from patient care revenue, 7% from grants on regional networks would allow such and contracts, 12% from contributions, screening programmes to translate to investment income and royalties. expedited timely care. While many cancer So, is it time for New Zealand to consider centres do focus on screening, the majority a national cancer centre? The building do not, as that is better left to the community blocks of the new cancer programme would with selective referral to regional centres, suggest that could be the next step. No doubt reserving complex and less common cancers there are unique challenges in New Zealand to be referred to a comprehensive cancer that I have not appreciated. However, great centre. Despite not having the benefi t of the challenges, the benefi ts for the cancer screening programmes, cancer centres do patient, the physicians, the research scien- have better short- and long-term outcomes, tists and the public are real. corrected for all stages.

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Competing interests: Nil. Author information: Frank Frizelle, Department of Surgery, Christchurch Hospital, Christchurch; Murray Brennan, Chairman Emeritus of Surgery, Memorial Sloan Kettering Cancer Center, New York. Corresponding author: Professor Frank Frizelle, Department of Surgery, Christchurch Hospital, Christchurch. [email protected] URL: www.nzma.org.nz/journal-articles/could-comprehensive-cancer-centres-improve-cancer- outcomes-and-equity-in-new-zealand

REFERENCES: 1. Cancer Statistics. Nation- Revised January 2020 11. Pope, Alexander. 1733. An al Cancer Institute. Wellington: http://www. Essay on Man: Epistle II. http://www.cancer. health.govt.nz/publication/ 12. Lieberman MD, Kilburn H, gov/about-cancer/ new-zealand-cancer-ac- Lindsey M, Brennan MF. understanding/statistics tion-plan-2019-2029 Relation of perioperative 2. New Zealand Ministry of 7. Allemani C, Matsuda T, deaths to hospital volume Health 2017. Mortality 2015 Di Carlo V, et al. Global among patients undergoing data tables. http://www. surveillance of trends in pancreatic resection for health.govt.nz/publication/ cancer survival 2000-14 malignancy. Ann Surg mortality-2015-data-tables (CONCORD-3): analysis 1995; 222:638–645. 3. New Zealand Ministry of of individual records for 13. Hannan EL, Radzyner Health. 2018. New cancer 37 513 025 patients M, Rubin D, Dougherty registrations 2016. URL: diagnosed with one of 18 J, Brennan MF. The http://www.health.govt. cancers from 322 popula- infl uence of hospital nz/ publication/new-can- tion-based registries in 71 and surgeon volume on cer-registrations-2016 countries. Lancet. 2018; in-hospital mortality for 391(10125):1023–1075. 4. Bray F, Ferlay J, Soer- colectomy, gastrectomy jomataram I, et al. 2018. 8. Skegg DCC, McCredie and lung lobectomy in Global cancer statistics MRE. Comparison of patients with cancer. 2018: GLOBOCAN esti- cancer mortality and Surgery 2002; 131:6–15. mates of incidence and incidence in New Zealand 14. Fong Y, Gonen M, Rubin mortality worldwide for 36 and Australia. The New D, Radzyner M, Brennan cancers in 185 countries. Zealand Medical Journal MF. Long-term survival is CA: A Cancer Journal for 2002; 115(1153):205–8. superior after resection Clinicians 68(6):394–424. 9. Elwood JM, Aye PS, Tin Tin for cancer in high volume 5. New Zealand Ministry of S. Increasing Disadvantages centers. Ann Surg Health Tatau Kahukura: in Cancer Survival in 2005; 242:540–547. Māori health statistics New Zealand Compared 15. Brennan MF, Radzyner http://www.health.govt. to Australia, between MH, Rubin D. Outcome – nz/our-work/populations/ 2000-05 and 2006-10. PloS more than just operative maori-health/tatau-kahuku- one, 2016; 11(3):e0150734. mortality. J Surg Oncol ra-maori-health-statistics/ http://doi.org/10.1371/ 2009; 99:470–477. journal.pone.01507 nga-mana-hauora-tuto- 16. Pfi ster DB, Rubin DM, hu-health-status-indicators/ 10. Te Aho o Te Kahu, Elkin EB, Neill US, Duck cancer Cancer Control Agency. E, Radzyner MR, Bach PB. 6. Ministry of Health. Ministry of Health New Risk adjusting survival 2019. New Zealand Zealand. http://www. outcomes of hospitals Cancer Action Plan health.govt.nz/our-work/ that treat cancer patients 2019–2029 – Te Mahere diseases-and-conditions/ without information on mō te Mate Pukupuku national-cancer-programme/ cancer stage. JAMA Oncol o Aotearoa 2019–2029. te-aho-o-te-kahu-can- 2015; 1(9):1303:1310. cer-control-agency

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Equity is the new black— and black lives matter Curtis Walker

tē whā a Te Mahuru, kua tukua te whaka- The move away from only the ‘cultural putanga hauora oritetanga ō tēnei hau- competence’ of the doctor, towards I taka rongonui. I tēnei wiki, kua tae mai achieving ‘cultural safety’ for patients is te wiki ō Te Reo, nōrerira kua tae hoki he deliberate and indicates a shift in thinking aheinga anō ki te whakanui i tēnei kaupapa- away from acquiring knowledge about the pa whakahirahira. ‘other’, towards a focus on how patients 4 Health equity is the new black—and Black receive their care. Research shows that Lives Matter. simply learning about another’s culture does not result in positive change or improved Renowned civil rights leader, Rev. Dr health outcomes.5 Martin Luther King Jr said: “Of all the forms of inequality, injustice in healthcare is the Doctors (and other health professionals, most shocking and inhumane”. and indeed the health system at large) have moral and professional obligations to strive Health equity matters: it is the right thing for health equity in our practice. In order to to do and the rights thing to do. It is of signif- do so, we need to understand the contrib- icance that all main political parties during uting factors to health inequity and our role election campaigning have indicated the in it. importance of health equity as a necessary measure of success of our health system. The New Zealand Medical Council has 6 Along with the recent Heather Simpson just released an independent report on the Health & Disability System Review,1 there state of cultural safety and health equity now appears to be a societal consensus that relating to doctors practicing in Aotearoa equitable healthcare is a must. New Zealand and patients receiving care. The Report places Māori patients’ experi- Given we Kiwis like to think of ourselves ences front and centre; however, many of as fair-minded, and equity is—at its the challenges and solutions are applicable heart – about fairness, this is perhaps not to other communities and populations who surprising. Although this is an encouraging experience inequitable healthcare. place to find ourselves, saying something is important and then actually achieving it Findings from the Report show there is are quite different end-points. We must all a strong need to acknowledge the systemic do what we can within our personal and racism and privilege that prevails in the professional spheres of influence to ensure health sector. Doctors must refl ect on their equity becomes reality. own cultural views and biases as a fi rst step, then work to infl uence and support the Late last year the Medical Council of New places they work in and those they interact Zealand (Council), in partnership with Te with, to improve how patients receive their Ohu Rata O Aotearoa (Te ORA), released its care. Examples of racist beliefs and practices Statement on Cultural Safety2 and He Ara that proliferate in the health system were Hauora Māori: A Pathway to Māori Health discussed in the last NZMJ editorial,7 and Equity.3 These statements set Council’s show there is considerable work to be done. expectations of doctors and healthcare organisations in the delivery of culturally Signifi cant structural barriers are also safe practice. In Aotearoa New Zealand, shown to impact patient care and cultural cultural safety is key to achieving equitable safety. These include short appointment health outcomes for Māori—a right under Te times and a focus on only the immediate Tiriti o Waitangi. presenting needs, which limits the ability

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to build relationships and partner with There is overwhelming evidence of ineq- patients and whānau. uities in health outcomes for Māori—you Many patients and whānau feel need look no further than the previous 7 disempowered, that their knowledge is issue of NZMJ or the Wai 2575 Māori Health 9 underestimated, and that they are not Trends Report. COVID-19 also presents involved in decision-making. This can lead a concern for the likely disproportionate 10 to whānau feeling distanced from both the impact on Māori. doctor and healthcare team, and from their Council encourages all doctors, employers, own health. One of the intended outcomes of training and professional organisations to the Ministry of Health’s Whakamaua: Maori consider the fi ndings in the cultural safety Health Action Plan 2020-2025 8 is that iwi, Report, draw on the data, and use this as a hapū, whānau and Māori communities can basis for achieving long-term, positive change exercise their authority to improve their for the benefi t of all patients and whānau. health and wellbeing. This is an important While the Report offers an insight into focus for collective action. current practice, it is only the fi rst step on a The Health and Disability System long journey. It sets a baseline for ourselves Review1 found that “Improving equity and our stakeholders to use when devel- and wellbeing for Māori requires imme- oping programmes, strategies and policies diate improvements in the way the system that support us to drive change. delivers for Māori, a growth in the range We are already seeing excellent work from and distribution of kaupapa Māori services, the Medical Schools in selecting for medical enhancements to rangatiratanga and mana workforce diversity, and the next generation motuhake”, and our fi ndings support this. of physicians in training will be “equity We need a diverse, culturally safe health natives”. The specialist medical colleges, workforce which refl ects the communities here and in Australia have Indigenous we serve. This begins through selection health and health equity embedded in their into medical school, and continues through training and recertifi cation programmes. the training continuum to vocational Cultural safety training is increasingly specialisation. (but far from universally) available, as is Māori doctors often experience additional education on Te Tiriti within workplaces cultural demands on top of their day-to-day such as district health boards. work. There is little evidence that such In exerting ourselves to success, we are cultural activities and training of others is reminded of the words of Tā Mason Durie, acknowledged and recognised in job descrip- Māori doctor and academic,who writes “The tions or as a key element of professional potential within the Māori population has development. Council is working with our never been greater … the potential to face partners to better support the Māori health the future with both the freshness of youth and disability workforce and increase Māori and the wisdom of age”.12 We should also be leadership and participation in governance encouraged by the well-known whakatauki or and decision making. Where representation tauparapara of Tā James Henare “Kua tāwhiti is low, it requires being bold and courageous kē to haerenga mai, kia kore e haere tonu. He when highlighting issues for Māori. nui rawa o mahi, kia kore e mahi tonu”.

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Competing interests: Nil. Author information: Curtis Walker, Chair Medical Council of New Zealand and Kaihautu Tuarua/Deputy Chairperson, Te Ohu Rata o Aotearoa (Te ORA), Ko Whakatōhea rāua ko Ngāti Porou ngā iwi. Corresponding author: Dr Curtis Walker, Chair Medical Council of New Zealand and Kaihautu Tuarua/Deputy Chairperson, Te Ohu Rata o Aotearoa (Te ORA), Ko Whakatōhea rāua ko Ngāti Porou ngā iwi. [email protected] URL: www.nzma.org.nz/journal-articles/equity-is-the-new-black-and-black-lives-matter

REFERENCES: 1. Health and Disability review and recommended 8. Ministry of Health. 2020. System Review. 2020. defi nition. Int J Equity Whakamaua: Māori Health Health and Disabil- Health 18, 174 (2019) Action Plan 2020-2025. ity System Review http://doi.org/10.1186/ Wellington: Ministry of – Final Report – Pūron- s12939-019-1082-3 Health. http://www.health. go Whakamutunga. 5. Elana Curtis: govt.nz/publication/whaka- Wellington: HDSR http:// http://e-tangata.co.nz/ maua-maori-health-ac- systemreview.health. comment-and-analysis/i- tion-plan-2020-2025 govt.nz/fi nal-report/ love-my-culture-but-its- 9. Ministry of Health. 2019. download-the-fi nal-report/ not-the-answer-to-mao- Wai 2575 Māori Health 2. Statement on Cultural ri-health-inequities/ Trends Report. Wellington: Safety. 2019. Medical Coun- 6. Baseline Data Capture: Ministry of Health. http:// cil of New Zealand. https:// Cultural Safety, Partner- www.health.govt.nz/ www.mcnz.org.nz/our-stan- ship and Health Equity publication/wai-2575-mao- dards/current-standards/ Initiatives Final Report. ri-health-trends-report cultural-safety/ Allen + Clarke. September 10. Why equity for Maori must 3. He Ara Hauora Māori – a 2020. http://www.mcnz. be prioritised during the Pathway to Māori Health org.nz/our-standards/ Covid-19 response. March Equity. 2019. Medical Coun- current-standards/ 2020. Rhys Jones. The cil of New Zealand. https:// cultural-safety/ Spinoff http://thespinoff. www.mcnz.org.nz/our-stan- 7. NZMJ Issue Vol 133 No co.nz/atea/18-03-2020/ dards/current-standards/ 1521: 4 September 2020 why-equity-for-maori- cultural-safety/ Acknowledging and must-be-prioritised-during- 4. Curtis E, Jones R, Tipene- acting on racism in the the-covid-19-response/ Leach D, et al. Why Health Sector in Aotearoa 11. Durie E. Te Tai Tini cultural safety rather http://www.nzma.org. Transformations 2025. Hui than cultural competency nz/issue-id/vol-133-no- Taumata 2005, Wellington is required to achieve 1520-4-september-2020 health equity: a literature

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How is dementia portrayed in New Zealand newsprint media? Causes, effects and moral evaluation Sarah Cullum, Rachael Simpson, Farzana Gounder

ABSTRACT AIMS: To evaluate how New Zealand newsprint media shapes discourse about dementia through its framing of the causes, e‘ ects and solutions, and who bears responsibility for the disease. METHODS: Using New Zealand’s three largest daily newspapers, we examined i) the coverage of dementia between 2012–2016, ii) the framing of causes and e‘ ects of dementia, and iii) the most frequent associations of causes and e‘ ects of dementia. We integrated the findings to assess the moral evaluation of dementia in New Zealand newsprint media. RESULTS: Of the 361 articles extracted all presented e‘ ects of dementia, 35% discussed causes and 7% mentioned solutions for dementia. Medical causes dominated over health behavioural and societal causes, and e‘ ects were mostly the negative impact on the individual, family and society. Modifiable medical causes were more likely to be associated with adverse outcomes for society whereas non-modifiable medical causes were more likely to be associated with adverse outcomes for the individual and/or their family. CONCLUSIONS: Between 2012–16 New Zealand newsprint media largely portrayed dementia from a ‘powerless victim’ frame. Further research is required to assess whether, since 2016, there has been a shi¤ towards media framing of dementia as potentially preventable and a social justice issue.

s the world’s population ages, de- control. However, recent research indi- mentia is increasingly recognised cates that approximately 35% of late-onset Aas a global public health priority.1 dementia can be attributed to modifi able There are estimated to be approximately 50 risk factors, including education, midlife million people worldwide currently living hypertension, midlife obesity, hearing loss, with dementia and this is projected to reach late-life depression, diabetes, physical inac- 150 million by 2050.2 The prevalence in New tivity, smoking and social isolation, whereas Zealand is currently estimated to be around non-modifi able genetic risk factors, such as 70,000 and expected to reach 170,000 by inheritance of the apolipoprotein E4 allele 2050.3 As a public health challenge, demen- account for very little of the overall risk.5 tia requires a public health response4 and Many of these risk factors are highly deter- a major element of this response are mass mined by individual health behaviours, media campaigns that raise public aware- which, if controlled, may mitigate or delay ness and understanding about dementia. the onset of dementia. Dementia is also The media play an important role in not increasingly being presented as a social only disseminating information to the public justice issue, as its rapid increase in preva- but also shaping opinions and behaviours lence, particularly in low and middle income towards families living with dementia. countries, has an associated economic 2 For many years dementia has been impact on families and society in general. viewed as a disease driven by genetics and Thus societal solutions for dementia may aging, factors over which people have no also start to be considered in the media. The

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power of media on health perceptions and as sympathetic photographic depictions of outcomes in these areas is important, not people living with dementia,11 overall the only as a potential infl uence on our health literature suggests that the prevailing image behaviours and the chances of developing of dementia in media is pessimistic, created dementia, but also how we choose to attempt through substantially negative frames, with to address the societal challenges ahead. an emphasis on stereotypically ageist depic- 12 The media selects which health issues tions, but attribution of responsibility for and perspectives are given prominence,6 the disorder has rarely been addressed. thus playing an essential role in the public’s The aim of our research is to evaluate consideration of the importance of health how New Zealand newsprint media shapes issues. This also shapes consideration of discourse about dementia through its how problems at individual and public framing of the causes, effects and solutions, policy levels should be resolved.7 Media and who bears responsibility for the disease. frames are a method of selecting salient We investigate this through examining i) the information regarding health issues and coverage of dementia between 2012–2016; ii) creating pathways to think about the issue’s the framing of specifi c causes and effects of news value in terms of causality, effects dementia; and iii) the association between and solutions.8 Frames defi ne a problem, specifi c causes and effects of dementia. suggest causality and consequences of Integrating the fi ndings of the above three the issue, and provide solutions. Through research questions, we discuss the moral these perspectives, frames can infl uence evaluation of dementia through the lens of the public, and policy-makers, on how to New Zealand newsprint media. respond to health issues. Frames are a cultural construct and thus Methods moral evaluations come into play when The study analyses dementia discourse considering the responsibility attributions across New Zealand’s three largest metro- 9 of causality and effects. When causality politan daily newspapers: The New Zealand for an issue is attributed to individuals’ Herald, The Dominion Post and The Press behaviours, the solution is also seen as the between 1 January 2012 to 31 December responsibility of those same individuals. 2016. Readership for the 2016 period were Likewise, when causality is attributed to as follows: 423,000 for The New Zealand societal factors, the solution lies in the modi- Herald, 159,000 for The Dominion Post and fi cation of social determinants. For instance, 157,000 for The Press.13 Our inclusion of the 10 Iyengar analysed audience attributions of three newspapers takes into consideration causal responsibility for poverty and found geographical readership coverage: The New that when the audience was exposed to Zealand Herald is published in Auckland and more individualised media frames depicting has its largest audience-base in the upper individuals living in poverty, the audience North Island, The Dominion Post, published assigned responsibility to those people as in Wellington, has highest readership in being the cause of their poverty. However, the lower North Island, while The Press, when the audience was exposed to more published in Christchurch, is the leading societal media frames, the audience assigned newspaper in the South Island. responsibility for poverty to society rather than the individuals. Iyengar’s study demon- Data extraction We used ‘dementia’ as a search term on strates how audience attributions, shaped the academic database Newztext. Articles through media framing, infl uences political were restricted to those that were at least opinions and ideas. As a result, media 150 words, in order to ensure articles were framing of responsibility has powerful of suffi cient length to develop themes and implications beyond purely the defi nition of responsibility discussions. Articles that fell the problem. outside these criteria were: letters to the Research into dementia representation in editor, advertisements, events, obituaries, media discourse is relatively sparse when duplicates within the newspaper, reports compared to other public health issues such that were not about dementia in humans (as as cancer, obesity and HIV. While dementia in articles discussing animal dementia) and coverage is positive in certain areas, such items that mentioned dementia in passing.

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Data analysis solution, and we marked it as being present We conducted the research in three once per document under that attribution phases of content analysis. We fi rstly regardless of how many times the theme developed thematic codes and their and its associated reasoning device was reit- attributed reasoning devices of cause, effect erated within the article. and solution. Using Ward’s hierarchical Once we had exhausted all possible codes clustering,14 we distributed codes under within the cohort of news stories and the thematic categories. We categorised the wider literature, we then developed and thematic codes under the three generic implemented the coding matrix.15 The frames identifi ed as being the dominant coding matrix consisted of cause, effect and theme in the health discourse: medical, solution along the y-axis and medical, health health behavioural and societal. For each behavioural and societal frames along the article, we also identifi ed the dominant x-axis (see Table 1), similar to that recently theme mentioned as a cause, effect or developed for the framing of diabetes.16

Table 1: Coding matrix for framing of dementia by New Zealand newsprint media.

Medical Health behavioural Societal Causes Non-modifiable: Personal attitudes: National level: Biological aging Personal attitudes to dementia Laws and policies Genetic predisposition Personal beliefs about dementia Government initiatives Amyloid plaques and proteins Personal knowledge about dementia National higher education access

Traumatic brain injury: Lifestyle factors: Local level: Head trauma Health behaviours Workplace factors Concussion Diet Healthcare resources Lack of exercise Geographical determinants Modifiable risk factors: Recreational drug use Socioeconomic determinants Hearing loss Alcohol consumption Access to higher education Cardiovascular risk factors Smoking Obesity Inadequate sleep Community-based: Depression Unhealthy lifestyle Community-based activities Vitamin deficiencies Community-level beliefs Thyroid abnormalities Social networks’ influence on Medication side-e‘ ects behaviours and attitudes

E ects Physical impairments: Quality of life: National level: Slower gait Ability to self-care Laws and policies Poorer balance Loneliness National economy Lower coordination Conducting daily activities Weaker muscles Local level resources: Workforce Cognitive impairment: Behavioural changes: Healthcare resources Memory loss Recklessness Residential care resources Confusion and wandering Aggression Word-finding di‘ iculties Mood swings Community response: Depression Physical abuse and neglect Personality changes Financial abuse Social ties within family Death Family caregiver burnout/stress Reduced finances of family

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Table 1: Coding matrix for framing of dementia by New Zealand newsprint media (continued).

Solutions Medication Health behavioural prevention: National level: Medical advancements Personal attitudes to dementia Laws and policies Personal beliefs about dementia Government initiatives Personal knowledge about dementia National higher education access Health behaviours Healthy diet Local level: Adequate exercise Workforce Adequate sleep Healthcare resources Healthy lifestyle Support for caregivers Housing requirements Residential care Socio-economic determinants Access to higher education

Community-based: Community-based activities Community-level beliefs Social networks’ influence Caregivers’ responses Family responses Formal carers’ responses Social networks’ response

Finally, we used measures of association to examine the foremost cause-effect rela- Results tionships within dementia discourse in New Framing of dementia in New Zealand newsprint media. Zealand newsprint media We used MAXQDA Analytics Pro for the (2012–2016) qualitative coding scheme development and Using the word ‘dementia’ as a search content analysis, and its statistics module for term on the academic database Newztext statistical analysis to make inferences about resulted in a total of 800 articles: 242 articles measures of association between cause and from The New Zealand Herald, 285 articles effect themes. from The Press and 273 articles from The Intercoder reliability Dominion Post: 439 articles did not meet the Two of the authors (FG, RS) independently inclusion criteria; 361 articles were included coded 75 articles (20%) to assess inter-coder in the study. All 361 articles presented the reliability. An acceptable level of agreement effects of dementia, 35% discussed causes for Krippendorff’s17 alpha is α=0.8 (Krippen- and 7% mentioned solutions for dementia. dorff, 2004:241). Our study achieved α=0.851 Table 2 presents the frequency of media across all codings. For each of the three framing for the years 2012–16 and shows an frames, alpha scores were similar: medical increase in coverage over that time period. frame α=0.881, societal frame α=0.861, and Table 3 presents the causes and effects behavioural frame α=0.874. of dementia as reported through medical,

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Table 2: Frequency of medical, health behavioural, and societal framing of the causes, effects and solutions for dementia in New Zealand newsprint media (2012–2016).

FRAMES 2012 2013 2014 2015 2016 Total CAUSE

Medical 10 15 9 22 50 105

Health behaviour 4 2 1 2 3 12

Societal 2 2 2 2 2 10

Total 16 19 11 26 55 127

EFFECTS

Medical 19 11 9 23 57 119

Health behaviour 10 8 6 10 12 46

Societal 41 35 29 45 46 196

Total 70 54 44 78 115 361

SOLUTION

Medical 3 2 2 6 5 18

Health behaviour 1 0 0 1 2 4

Societal 0 0 0 1 2 3

Total 4 2 2 8 9 25

Total 90 75 57 112 179 513 behavioural and societal frames in New Framing the e‘ ects of dementia Zealand newsprint media. As solutions were The framing of the effects of dementia rarely presented (7%) and mostly described were mainly represented by the societal existing medication or potential medical frame (n=196, 54%). Within this frame, 70% advances available for dementia, these were of articles reported the adverse societal not included in the table. consequences of living with dementia, such Framing the causes of dementia as potential fi nancial abuse, physical abuse Framing of causality mostly used the and neglect, the effect on family relation- medical frame (83%). Within medical ships and caregivers’ stress and burnout. framing, 72% of the topics discussed were The remaining 30% in the societal frame potentially modifi able causes of dementia addressed dementia’s impact on society (rugby-related head trauma and concussion, including health and social care resources, hearing loss, medication use, cardiovas- the national economy, workforce, laws and cular risk factors and obesity), but only nine policies. percent of medical causes were presented as The medical frame for effects of dementia a result of lifestyle or health behaviour. One was the second most utilised (n=119, 33%). quarter of medical frames were attributed As with the societal frame, the emphasis to non-modifi able causes such as biological was on living with dementia. Within the ageing and genetic factors, and eight percent medical frame, articles were more likely identifi ed societal causes of dementia, for to identify dementia’s cognitive impact example the impact of air pollution or including memory loss, confusion and aluminium in the water supply. wandering, word-fi nding diffi culties and personality changes.

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Table 3: Causes and effects of dementia via medical, behavioural and societal frames in New Zealand newsprint media.

N% N %

Causes mentioned in news articles EΠects mentioned in news articles Medical frame 105 83% Medical frame 119 33% Non-modifiable:

Genetic predisposition 14 11 Memory loss 40 11

Biological aging 13 10 Confusion and wandering 33 9

Amyloid plaques 3 2 Word finding di‘ iculty 14 4

Personality changes 29 8

Modifiable: Death 3 1

Traumatic brain injury/concussion 49 39

Hearing loss 4 3

Cardiovascular 16 13

Obesity 5 4

Medication side-e‘ ects 1 1

Health behaviour frame 12 9% Health behaviour frame 46 13% Lifestyle factors 9 7 Quality of life:

Personal attitude 3 2 Ability to self-care 15 4

Loneliness 10 3

Conducting daily activities 9 2 Behavioural changes:

Mood swings 9 2

Aggression 2 1

Recklessness 1 1

Societal frame 10 8% Societal frame 196 54% Pollutants 5 4 National level:

Influence of social networks 3 2 National economy 20 5

Community-level activities 2 2 Laws and policies 15 4 Local resources:

Workforce impact 13 4

Strain on healthcare resources 7 2

Strain on social care resources 7 2 Community responses:

Physical abuse and neglect 54 15

Financial abuse 31 8

Social ties within family 24 7

Family caregiver stress and burnout 25 7

Total causes 127 100% Total eΠects 361 100%

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The health behavioural frame was referred to least in discussions of dementia Discussion effects (n=46, 13%). Within this frame, the Our study is the fi rst to examine media majority addressed reduced quality of life framing of dementia and its associated for people living with dementia due to the moral evaluations using a coding matrix loss of independence in self-care, daily activ- that consists of cause, effect and solution ities and feelings of loneliness. A few articles along the y-axis and thematic categories by also mentioned behavioural changes, such medical, health behavioural and societal as mood swings, and increased aggression frame along the x-axis, extending the work and recklessness. by Gounder et al, 2018.16 We found that, between 2012 and 2016, New Zealand news- Association between medical print media largely attributed the causes of causes and societal e‘ ects in New dementia to medical causes, whereas the Zealand newsprint media effects focused on the negative impact of the Table 4 presents the medical causes and disorder on individuals, families and society. societal effects that were most frequently Modifi able medical causes were more likely mentioned together in the same article to be associated with adverse outcomes for (p<0.0001). Modifi able medical causes (eg, society whereas non-modifi able medical concussion and cardiovascular risk factors) causes were more likely to be associated were more likely to be associated with with adverse outcomes for the individual adverse outcomes for society (eg, residential and/or their family. care resources), and non-modifi able medical Causes and e‘ ects of dementia causes (eg, biological ageing and genetic) Recent epidemiological evidence suggests were more likely to be associated with that approximately 35% of late-onset adverse outcomes for the individual and/or dementia can be attributed to modifi able their family (elder abuse, caregiver stress risk factors.5 Many of these are related to and burnout, and impact on social ties). lifestyle choices and therefore important to Figure 1 presents examples of quotes from target for health promotion and prevention articles to illustrate the associations made of dementia. Between 2013 and 2016, 35% of between medical causes and societal effects the articles about dementia in New Zealand of dementia.

Table 4: Signifi cant associations between causes and effects of dementia as portrayed in New Zealand newsprint media.

Medical cause Societal eΠect Measure of association (Chi-square)

Modifiable: Cardiovascular risk Residential care X2(1)>=185.99, p<0.0001

Cardiovascular risk Family caregiver’s stress and burnout X2(2)>=20.99, p<0.0001

Concussion Residential care X2(1)>=92.25, p<0.0001 resources

Non-modifiable: Biological aging Residential care X2(1)>=15.55, p=0.0001

Biological aging Abuse and neglect X2(1)>=32.99, p<0.0001

Genetics Family caregiver’s stress and burnout X2(1)>=45.374, p<0.0001

Genetics Social ties within family X2(6)>=60.98, p<0.0001

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Figure 1: Examples of associations between medical causes and societal effects of as portrayed in New Zealand newsprint media.

Causes Societal eΠects of dementia

Non-modifiable Most of us know someone with one of these insidious diseases that select at random but can run in families. Not that causes: genetics anything can necessarily be done to prevent it; one just starts dri€ ing away, or the lights go out, one a€ er the other. The ageing mothers or fathers of several people I know are in that twilight zone, unable to recognise their own children. …she said the same things over and over again, was an unbearable torment. But he was old school, took the “in sickness and in health” bit to the letter of the marital pact battling on with this strange person living alongside him feeling more and more alone. When the elderly couple moved in with their daughter, they lost an hour of domestic assistance and a medication prompt. “Because I was here, they got what I feel was the bare minimum.” Her husband was advised to quit his job as he would eventually become her full- time carer. “I was told by my doctor to give a whole lot up. It wasn’t even logical.” The recurring themes are family taking advantage of older people or even helping themselves to the person’s money; commission salespeople or scammers duping them; and carers abusing them financially. Other examples included a man suŽ ering dementia who was regularly tied to a chair when his wife went out of the house. She felt it was “okay” to tie him up due to his confused mental state. ...the Baby Boom generation suddenly arriving at its retirement, and there is the added worry of how society is going to be able to aŽ ord our care. A cost crunch must be coming, so how grim could those last years be? …health boards are already having to plan ahead and reconsider how they will cope as dementia rates start to soar. …already a worrying shortage of dementia beds and a “huge” lack of funded community services of people with dementia and their carers in this country.

Modifiable … is 86 now, in care on Auckland’s North Shore. “When you play more than 190 first-class games, the chances you got causes: concussed at some point are pretty high.” concussion, “A link seems likely between serious head-knocks and dementia and the strain rugby-related injuries could put on the traumatic health system will be monitored”, (the) Health Minister said. brain injury, “Life expectancy is growing much faster than health expectancy, so a third of our newly gained extra years look likely to cardiovascular be sickly ones. … We are going be riding motorbikes longer but also spending longer in hospitals and dementia homes.” risk factors

newsprint media emphasised the medical little has changed in the last 14 years: in causes of dementia. Almost half of these 2006 Kirkman18 similarly reported that described rugby-related head injuries and New Zealand newspaper articles between concussion, but medical causes were rarely 1998 and 2002 represented people living presented as lifestyle choices or health with dementia as “powerless victims of behaviours. This framing might suggest to their disease, victims of their carers and readers that there is little that they can do to victims of health and social care services”. prevent dementia, or that it is rugby players Likewise, in the UK print media, dispropor- who are most at risk. tionate negative emphasis on the effects of New Zealand newsprint media also placed dementia, in addition to the ageing demo- great emphasis on the effect of dementia on graphic, has been described. Peel (2014) the individual. These were often described concluded that “the high level of emphasis in negative, even catastrophic terms (see on the lack of personal control over the cause Figure 1). The effects were commonly of dementia and the widespread detrimental reported as a loss of personhood, judgement effects on society creates a public discourse and autonomy, resulting in a vulnerability about dementia that is pessimistic and to abuse from others, and the likelihood of contributes to stigma around the disease”, ending up in a care home. In this respect, as well as being a signifi cant contributor to

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societal “dementia-panic”.19 In a more recent might be construed as empowering people examination of news articles about dementia to have control over their disease, it might published in the British press between 2012 also be viewed as problematic if individuals and 2017, the biomedical emphasis was are presented as being morally deviant in noted, in particular the reliance on phar- their health behaviours.26 The authors of maceutical treatments as the only possible the Australian study25 argue that health solution to prevent dementia.20 advice given in newspaper articles is often Moral evaluation accompanied by underlying moral claims regarding audiences’ obligation to commit to We found that non-modifi able medical dementia preventative activities. Those that causes were more likely to be associated do not take preventive measures might be with adverse outcomes for the individual seen as being responsible for causing their and/or their family. These fi ndings replicate disease, and possibly for the societal conse- previous research which has shown that if quences of dementia such as the effects on the frame attributes dementia to non-mod- the public purse, thus shifting the frame ifi able medical causes (or ‘fi xed attributes’) from victimhood to victim-blaming. such as genetics and biological aging, these are perceived as being outside the The topics of lifestyle choices and control of the individuals,21 having adverse health behaviours in dementia have not consequences on an individual’s lifestyle received the same level of attention in resulting in ‘social death’ with loss of self New Zealand media. This lack of attention and personhood, independence and quality may be perceived by some as problematic, of life.22 The person (and their family) are as it may add to the anxiety around seen as victims of the disease.22,23 While the dementia as an incurable and untreatable medical frame distances individuals from disease (victimhood). On the other hand, blame for their disease, it also decreases unhelpful victim-blaming for perceived their agency to alter their health outcomes. unhealthy lifestyle choices has long been This reinforces the idea of individuals recognised in various chronic diseases living with dementia as blameless victims such as obesity and diabetes,27 and partic- of their circumstances, and powerless to ularly so among Māori in New Zealand.28 alter their prognosis, contributing to the The scarce research evidence available in victimhood frame.24 New Zealand suggests that Māori and New Zealand Pacifi c Islanders may be at greater In contrast, we found that modifi able risk of dementia29 and that this may be medical causes of dementia (such as due to higher rates of risk factors such as rugby-related head injuries) were less diabetes, obesity and cardio-vascular disease likely to be associated with adverse conse- compared with New Zealand Europeans.30,31 quences for the individual, and more likely Thus dementia could become yet another to be associated with adverse outcomes chronic disease that is more common in for society, such as the effect on the use of socially disadvantaged peoples, who are scarce health and social care resources. This then made responsible for developing might suggest a shift away from victimhood the disease and morally judged for their and a possible move towards blaming the assumed unhealthy lifestyle choices and victims and their lifestyle choices for the health-related behaviours having an impact impact that dementia has on society. on society as a whole. Victimhood or victim-blaming? In recent years, the UK news media has Strengths, limitations and begun to shift its emphasis to health-related implications behaviours and dementia, in areas such as This study provides a comprehensive diet, exercise and lifestyle, and what people analysis of the national media coverage of can do to “stave off” dementia.19 A similar dementia, but the fi ndings from this study shift has been observed in Australian news are limited due to the homogeneity across media where a causal relationship between mainstream New Zealand newsprint media engaging in preventative behaviour and due to merged ownership: the Australian individuals’ risk of cognitive decline and media company APN News & Media owns dementia has been emphasised.25 While this The New Zealand Herald, while Fairfax owns

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The Dominion Post and The Press. News- as potentially preventable and/or a social paper readership globally is on the decline justice issue. Consequently, an update of but remains popular in New Zealand. our research fi ndings is already required to In 2019 over three million (77%) of New assess whether there has been change in the Zealanders read or accessed newspapers New Zealand media framing of dementia in an average seven-day period via print since 2016 which will contribute to this new or online (website or app) platforms,13 so public health approach. New Zealand newsprint media still enjoys substantial infl uence on public perception Conclusion and therefore policy development. However, Dementia is a complex issue as a result as other media sources are increasingly of it having both modifi able and non-modi- used by the public to educate themselves, fi able origins and shaped by its multilayered these will also require examination in future effects on individuals and society and a research in this area. current lack of solutions for prevention As the prevalence of dementia changes or cure. Dementia remains a highly stig- rapidly, so too does the portrayal of the matised disorder in many countries,32 so disease. In addition to its recent portrayal it is important that information about as a potentially preventable disorder, the disease is disseminated accurately dementia is also increasingly presented as and responsibly. From a human rights a social justice issue. This frame represents perspective, there is perhaps a moral obli- dementia as a public and social health gation for media to choose words carefully crisis through depiction of the effect of and to not portray people with dementia as dementia across family, community and powerless, child-like, vulnerable, dependent 2 wider society. Dementia as a societal issue, and a burden. By portraying people using with adverse social and fi nancial conse- a personhood model33 the focus is on the quences, will require societal solutions human being rather than the disease. From such as social inclusion, a public health a social justice perspective, the New Zealand approach to risk reduction and support for media has an important role to play in families who provide most of the care. This promoting an inclusive society that cham- approach has been adopted by the World pions the rights of individuals and families Health Organization with the production living with dementia, rather than reinforcing of a global action plan on the public health a culture of victim-blaming and stigma. This response to dementia, calling on its 194 approach would contribute to engaging the member states, including New Zealand, public in addressing the inevitable social to produce a national dementia plan or and fi nancial consequences of the expected 4 strategy for 2017–2025. Our study examined ‘tsunami’ of dementia and help to address newspapers from 2013 to 2016 prior to the potential inequities for people and families introduction of the concept of dementia living with dementia in New Zealand.

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Competing interests: Nil. Author information: Sarah Cullum, Senior Lecturer, Dept of Psychological Medicine, The University of Auckland; Rachael Simpson, Psychiatric Registrar, Mental Health & Addiction Services, Counties Manukau District Health Board, Auckland; Farzana Gounder, Deputy Head of School (Research), Dept of Linguistics, Institute of the Pacifi c United New Zealand Tertiary Institute, Palmerston North. Corresponding author: Sarah Cullum, Department of Psychological Medicine, School of Medicine, Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland Mail Centre, Auckland 1142. [email protected] URL: www.nzma.org.nz/journal-articles/how-is-dementia-portrayed-in-new-zealand-newsprint- media-causes-effects-and-moral-evaluation

REFERENCES: 1. World Health Orga- 7. Altheide DL. “The News to Dementia: A Framing nization. Dementia: a Media, the Problem Analysis Of Media Content. public health priority. Frame, and the Produc- Social Science & Medicine. United Kingdom; 2012. tion of Fear”. The 2012; 74(8):1274–1281. 2. Prince M, Wimo A, Sociological Quarterly. 13. Nielsen Company. Nielsen Guerchet M et al. World 1997; 38(4):647–668. National Readership Alzheimer Report 2015: the 8. Van Gorp B. The construc- Survey. New Zealand: global impact of dementia, tionist approach to Nielsen Company; 2017. an analysis of prevalence, framing: Bringing culture 14. Johnson S. Hierarchical incidence, costs and trends. back in. Journal of Commu- clustering schemes. Alzheimer’s Disease Inter- nication. 2007; 57(1):60–78. Psychometrika. 1967; national. London; 2015. 9. Entman RM. Framing: 32(3):241–254. 3. Deloitte Access Econom- Toward Clarifi cation of 15. Van Gorp B. Where is ics. Updated Dementia a Fractured Paradigm. the Frame?: Victims and Economic Impact Report Journal of Communica- Intruders in the Belgian 2016, New Zealand. Alzhei- tion. 1993; 43(4):51–58. Press Coverage of the mers New Zealand; 2017. 10. Iyengar S. Framing Asylum Issue. European 4. World Health Organization. responsibility for political Journal of Communication. Global action plan on the issues: The case of pover- 2005; 20(4):484–507. public health response ty. Political Behavior. 16. Gounder F, Ameer R. to dementia 2017–2025. 1990; 12(1):19–40. Defi ning diabetes and World Health Organi- 11. Kessler E-M, Schwender C. assigning responsibility: zation. Geneva; 2017. Giving Dementia a Face? how print media frame 5. Livingston G, Sommerlad The Portrayal of Older diabetes in New Zealand. A, Orgeta V, et al. Dementia People With Dementia Journal of Applied prevention, intervention, in German Weekly News Communication Research. and care. Lancet. 2017; Magazines Between the 2018; 46(1):93–112. 390(10113):2673–2734. Years 2000 and 2009. 17. Krippendorff K. 6. Frost K, Frank E, Maibach Journals of Gerontology Reliability in content E. Relative risk in the news Series B: Psychological analysis: some common media: a quantifi cation Sciences and Social Scienc- misconceptions and of misrepresentation. es. 2012; 67(2):261–270. recommendations. Human Am J Public Health. 1997; 12. Van Gorp B, Vercruysse Communication Research. 87(5):842–845. T. Frames and Count- 2004; 30(3):411–433. er-Frames Giving Meaning

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18. Kirkman AM. Dementia in 24. Kvaale EP, Haslam N, 29. Cullum S, Mullin K, the news: the media cover- Gottdiener WH. The ‘side Zeng I, et al. Do commu- age of Alzheimer’s disease. effects’ of medicalization: nity-dwelling Maori Australasian Journal on A meta-analytic review and Pacifi c peoples Ageing. 2006; 25(2):74–79. of how biogenetic expla- present with dementia 19. Peel E. ‘The living death of nations affect stigma. at a younger age and at Alzheimer’s’ versus ‘Take Clinical Psychology Review. a later stage compared a walk to keep dementia 2013; 33(6):782–794. with NZ Europeans? at bay’: representations of 25. Lawless M, Augoustinos M. Int J Geriatr Psychiatry. dementia in print media Brain health advice in the 2018; 33(8):1098–1104. and carer discourse. news: managing notions of 30. Joshy G, Simmons D. Epide- Sociology of Health & individual responsibility in miology of diabetes in New Illness 2014; 36(6):885–901. media discourse on cogni- Zealand: revisit to a chang- 20. Bailey A, Dening T, Harvey tive decline and dementia. ing landscape. N Z Med J. K. Battles and break- Qualitative Research in 2006; 119(1235):U1999. throughs: representations Psychology. 2017; 14:62–80. 31. Feigin VL, Krishnamurthi of dementia in the British 26. Brown R. Resisting RV, Barker-Collo S, et al. press. Ageing and Society. Moralisation in Health 30-Year Trends in Stroke 2019:1–15. doi: 10.1017/ Promotion. Ethical Theory Rates and Outcome in S0144686X19001120. and Moral Practice. Auckland, New Zealand 21. Bond J. The medical- 2018; 21(4):997–1011. (1981–2012): A Multi-Ethnic ization of dementia. 27. Garry E, John D. Beyond Population-Based Series Journal of Aging Studies. Obesity and Lifestyle: A of Studies. PloS one. 2015; 1992; 6(4):397–403. Review of 21st Century 10(8):e0134609-e0134609. 22. Corner L, Bond J. Being at Chronic Disease Determi- 32. Alzheimers Disease Inter- risk of dementia: Fears and nants. BioMed Research national. World Alzheimer anxieties of older adults. International. 2014; 2014. Report 2019: Attitudes to Journal of Aging Studies. 28. Reid P, Paine S-J, Curtis E, et dementia. London; 2019. 2004; 18(2):143–155. al. Achieving health equity 33. Kitwood TM. Dementia 23. Sweeting H, Gilhooly M. in Aotearoa: strengthening Reconsidered: the Dementia and the phenom- responsiveness to Māori in Person Comes First. enon of social death. health research. The New Buckingham: Open Sociology of Health & Zealand Medical Journal. University Press; 1997. Illness. 1997; 19(1):93–117. 2017; 130(1465):96–103.

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Patient characteristics and predictors of completion of a pulmonary rehabilitation programme in Auckland, New Zealand Sarah Candy, Nicola Jepsen, Christin Coomarasamy, Jonathan Curry, Grace Dodson, Joe Pomelile, Mitchel Versey, Julie Reeve

ABSTRACT AIM: Chronic respiratory diseases, such as chronic obstructive pulmonary disease, are a worldwide public health problem. Pulmonary rehabilitation is a gold-standard intervention for these diseases, yet attendance and completion rates are poor. Counties Manukau Health, in Auckland, New Zealand, has a high prevalence of chronic respiratory disease and a culturally diverse population, comprising large numbers of Māori and Pacific Island people, who are known to be disproportionately a‘ ected by chronic respiratory disease. The aim of this study was to investigate patient characteristics a‘ ecting engagement with the Counties Manukau Health pulmonary rehabilitation programme and identify factors predicting completion of the programme. METHODS: Investigators performed a retrospective analysis using routinely collected data of 2,756 patients invited to attend the pulmonary rehabilitation programme at Counties Manukau Health. Data were analysed to compare demographic and clinical outcomes of patients who completed, did not complete or did not attend the programme, and identified factors predicting completion. RESULTS: Significant di‘ erences were found between groups in demographic and clinical characteristics. Increasing age, higher six-minute walk test distance at programme commencement and European ethnicity were significant predictors of completion of the PR programme. CONCLUSIONS: Compared to European people, Māori were 52% less likely and Pacific Island people were 40% less likely to complete the programme. These findings are significant for the Counties Manukau Health population. Further work needs to focus on determining how to make programmes more engaging to di‘ erent cultures and how we can aim to reduce health inequities in these populations.

hronic obstructive pulmonary disease Pulmonary rehabilitation (PR) is an (COPD) was the third leading cause of evidence-based, multi-disciplinary Cdeath in 2016 1 and resulted in more programme, comprising exercise and than three million deaths worldwide in education for people with chronic respi- 2015.2 In New Zealand, the population prev- ratory disease.6 It is an essential component alence of COPD is estimated to be 14.2%.3 of therapy for COPD.7 Pulmonary rehabili- The disease is associated with a signifi cant tation has been shown to improve exercise burden on the healthcare system.4 Interna- capacity, dyspnoea and health-related tionally, COPD disproportionately affects quality of life,6 reduce hospital readmissions people living in developing countries2 and and mortality.8 Despite this, rates of atten- indigenous people in developed countries.5 dance at, and completion of PR programmes In New Zealand, COPD is more prevalent are poor; internationally, up to 50% of among Māori, Pacifi c Island people and people referred to PR programmes fail to those living in more deprived areas.3 attend and rates of non-completion have

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been reported between 9.7% and 31.8%.9 1. ‘Never-attenders’—who did not One New Zealand-wide study estimated attend either the initial assessment or that only 0.9% of people over 40 with COPD programme; were offered PR per year, and of those, only 2. ‘Initial assessment-only attenders’— 10 56% completed the programme. Another who attended an initial assessment PR programme in New Zealand found their but did not commence the programme enrolled less than 2% of the programme; region’s population with COPD.11 3. ‘Non-completers’—who completed less Counties Manukau Health (CMH), in the than 75% of the programme; Auckland region, is one of 20 district health 4. ‘Completers’—who completed at least boards in New Zealand. Better Breathing is a 75% of the programme. PR programme, which runs at four different sites in CMH—one acute care facility and Data for extraction and analysis were three community-based sites. Patients attend determined prior to commencement of the a one-off initial assessment, then attend the study and were extracted from routinely exercise and education-based PR programme collected data from the CMH electronic twice-weekly for eight weeks. The popu- patient information system by a Senior lation at CMH is culturally diverse, with Analyst at Health Intelligence and Infor- 16% Māori, 21% Pacifi c Island, 24% Asian matics at CMH and two researchers (NJ and and 38% New Zealand European/other.12 SC). Following data extraction, retrieval The population has a distinct socioeconomic of missing data was undertaken by two makeup, with over 36% of people living in members of the research team (NJ and SC), the most deprived deciles, based on the New who used the hospital’s patient information Zealand Deprivation Index [NZDep2013].13 systems to extract any available missing data. Within CMH, the prevalence of chronic Data collected included demographic charac- respiratory disease is high14 especially teristics (age, gender, self-reported ethnicity, among Māori, Pacifi c Island people and those marital status, smoking status, occupation, living in deprived areas.3 With guidelines spoken language, level of deprivation) and widely recommending PR as a gold-standard clinical characteristics (referral source, intervention,7,15,16 it is important to consider percent predicted forced expiratory volume factors impacting upon engagement with in one second (FEV1%), Hospital Anxiety PR in the context of contemporary practice and Depression Scale (HADS) score, Medical in culturally and socioeconomically diverse Research Council Dyspnoea Score (MRC), populations, such as CMH. Body Mass Index (BMI) and six-minute walk test (6MWT) distance). The clinical data were The primary aim of this study was to taken at the initial assessment and therefore identify and compare the key factors in only available for those who attended at least predicting patients who complete and those an initial assessment. who did not complete the PR programme. The secondary aim was to compare the char- Data were analysed in four ways: acteristics of those who attended and those 1. To compare the characteristics who never attended the PR programme. of those who did not attend the programme (never-attenders and Methods initial assessment-only attenders) to those who did attend the programme Investigators performed a retrospective (completers and non-completers); analysis of routinely collected health infor- mation data of 2,756 patients invited to 2. To compare the characteristics of attend the Better Breathing PR Programme, never-attenders to initial assess- run across the four sites at CMH. We eval- ment-only attenders; uated data from all patients who were 3. To compare the characteristics of invited to attend between 1 January 2010 completers to non-completers; and 31 December 2015. Patients were 4. To identify factors predicting divided into four groups: completion of the programme.

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Chi-square, two-sample t-tests and Krus- complete cases using likewise deletion. This kal-Wallis tests were undertaken to assess involved replacing the missing values for the associations between demographic and continuous variables by the median. clinical characteristics between the groups. The New Zealand Health and Disability Univariate and multiple logistic regression Ethics Committee stated ethical review was were carried out to test for signifi cant not required. Approval for the study was factors that were associated with completion granted by CMH Research Committee on 21 of the programme. To identify signifi cant April 2016 (Research Application Numbers predictors in the model after accounting for 5 and 6). the demographics variables, three model selection techniques were used, such as forward, backward and stepwise procedures, Results in SAS version 9.4. For those variables with Of the 2,756 patients that were referred more than 20% of missing data, the vari- to the Better Breathing programme, 1,028 ables were not included for model selection. (37%) never attended and 33 (1%) attended The model with the smallest Akaike Infor- the initial assessment only. The remaining mation Criterion was selected and variables 1,695 (62%) patients commenced the that were deemed signifi cant were kept in programme; 1,040 (61%) of those were the model. A p-value <0.05 was considered completers and 655 (39%) were non-com- statistically signifi cant. Sensitivity analysis pleters (see Figure 1). This shows that, was also carried out by using a single of all referrals to the Better Breathing imputation method and compared to the programme, 1,716 (62%) never attended or did not complete the programme.

Figure 1: Flow chart showing the numbers of referrals to, attendance at and completion of the Better Breathing Pulmonary Rehabilitation programme between 2010 and 2015.

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Characteristics of those who attended the summarised in Table 1. There were signif- programme (completers and non-completers icant differences between these groups in combined) and those who did not attend marital status (p=0.001), deprivation index the programme (never-attenders and initial (p=0.021), smoker (p=<0.001), distance from assessment-only attenders combined) are home to PR site (p=<0.001) and site location

Table 1: Demographic characteristics by group—attenders (completers and non-completers combined) and non-attenders (never attenders and initial assessment-only attenders combined).

Attenders Non-attenders P value Missing n=1,695 n=1,061 proportion n (%) n (%)

Gender Female 898 (62.1) 549 (37.9) 0.53 0% Male 797 (60.9) 512 (39.1)

Ethnicity Asian 102 (68.5) 47 (31.5) 0.44* 1.1% European 824 (61.0) 526 (39.0)

Māori 395 (60.1) 262 (39.9)

Pacific Island 334 (62.0) 205 (38.0)

Other 18 (60.0) 12 (40.0)

Marital status Married/partnered 956 (64.2) 533 (35.8) 0.001* 4.6% Separated/divorced 161 (61.5) 101 (38.6)

Single 221 (59.2) 152 (40.8)

Widowed 275 (54.4) 231 (45.7)

Smoker Ex-smoker 968 (62.4) 584 (37.6) <0.001 5.0% Smoker 247 (52.6) 223 (47.5)

Non-smoker 394 (66.2) 201 (33.8)

Language English 1,465 (61.8) 906 (38.2) 0.75* 5.7% spoken Other 144 (62.9) 85 (37.1)

Site location Acute Care Facility 962 (64.1) 540 (36.0) <0.001* 0% Community 733 (58.4) 521 (41.6)

Employment Not working 427 (61.8) 264 (38.2) 0.96* 6.2% status Retired 733 (61.3) 463 (38.7)

Working 431 (61.8) 266 (38.2)

Age Mean (SD) 66.8 (11.0) 67.0 (12.1) 0.64* 0% Age range 19–92 21–93

Distance from Median (IQR) 4.0 (1.9–7.1) 4.9 (2.4–9.9) <0.001‡ 0% home – PR site (kms)

Deprivation Median (IQR) 9 (6–10) 9 (7–10) 0.021 0% index

*The parametric p-value is calculated by two sample t-test for numerical covariates and chi-square test for categorical covariates. ‡The non-parametric p-value is calculated by the Kruskal-Wallis test and Mann-Whitney-U test for numerical covariates and Fisher’s exact test for categorical covariates. KEY: kms, kilometres; IQR, inter quartile range; n, number; PR, pulmonary rehabilitation; SD, standard deviation.

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(p=<0.001). There were no statistically do not take part in the programme at all, signifi cant differences between attenders or do not complete the programme. An and non-attenders in age (p=0.64), gender older study exploring attendance at a PR (p=0.53), ethnicity (p=0.44), language spoken programme in an Auckland clinic reported (p=0.75) or occupation (p=0.96). that 41% of patients either did not attend, or 17 Comparison between demographic char- failed to complete the programme. A more acteristics of those who never attended recent study in a different New Zealand (n=1,028) and initial assessment-only region showed that 46% of those referred to 11 attenders (n=33) showed a statistically signif- PR completed the programme. Our results icant difference in ethnicity (p=0.001), with compare poorly with this, whereby only never-attenders having a larger proportion 38% of all patients referred completed the of European and Māori patients. The initial Better Breathing programme. In a review assessment-only group also had a signifi - of 11 international studies, non-completion 9 cantly higher proportion of patients who did rates were reported to be up to 32%, so it is not speak English as a fi rst language (22% of concern that our non-completion rates in vs 8%, p=0.02) and a larger proportion of those who commenced the Better Breathing married/partnered patients (80% vs 52%, programme (39%) appear to be higher than 9 p=0.03) compared to the never-attenders. those reported elsewhere. The small sample size in the initial assess- When comparing the characteristics of ment-only group limits the signifi cance of those who attended with those who did not these fi ndings. attend, signifi cant factors included distance When comparing demographic and travelled, site location, deprivation index clinical characteristics between the and marital status. Other studies investi- completer and non-completer groups, there gating reasons for non-completion of PR were statistically signifi cant differences have cited transport and the distance from 18,19 between the two groups in all characteristics home to PR site as problematic. While we except for gender, distance from home to PR found that the distance from home to PR and site and site location (Table 2). Furthermore, the location of PR was signifi cantly different for each year increase in age, patients were between attenders and non-attenders, 4% more likely to complete the programme once patients commenced the programme, (OR 1.04 95%CI 1.02–1.05, p=<0.001). For distance and location were no longer a every 10m extra that a patient walked in signifi cant factor infl uencing attendance. their 6MWT at programme commencement, This suggests that factors relating to the they were 3% more likely to complete the running of the PR programme itself may be programme (OR 1.03, 95%CI 1.02–1.04, more important than geographical location p=<0.001). Compared with Europeans, when considering completion rates. Māori were 53% (OR 0.47, 95% CI 0.35–0.65, Some studies have demonstrated that p=<0.001) and Pacifi c Island people were people with lower socioeconomic status 46% (OR 0.64, 95% CI 0.44–0.92, p=<0.001) may fi nd it harder to access transport and less likely to complete the programme. parking costs associated with attending Results of the univariate and logistic primary healthcare services20,21 and these regression model predicting completion factors have also been linked to poor of the better breathing programme are attendance at PR programmes.21 A widely displayed in Table 3. Results of multivariate used measure of social deprivation in New logistic regression models for both complete Zealand13 was used to investigate whether and imputed cases can be seen in Table 4. social deprivation affected completion rates at the Better Breathing programme. Even Discussion though there was an indication of depri- vation index being a signifi cant risk factor Data were collected on 2,756 patients (Table 3), after accounting for other char- referred to the Better Breathing programme acteristics, the deprivation index was not in the period under investigation; this data strongly correlated. However, it should be set is larger than those previously described noted that the univariate results indicate in other New Zealand studies.10,11 Our study that for every one unit increase in depri- has shown that 62% of all patients referred vation index, the likelihood of completing to the Better Breathing programme either the programme reduces by 8%.

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Table 2: Demographic and clinical characteristics by group–completers vs non-completers.

Completers Non-completers P value Missing n=1,040 n=655 proportion n (%) n (%)

Gender Female 536 (59.7) 362 (40.3) 0.13* 0% Male 504 (63.2) 293 (36.8)

Ethnicity Asian 61 (59.8) 41 (40.2) <.001* 1.3% European 595 (72.2) 229 (27.8)

Māori 184 (46.6) 211 (53.4)

Pacific Island 173 (51.8) 161 (48.2)

Other 14 (77.8) 4 (22.2)

Marital status Married/partnered 593 (62.0) 363 (38.0) 0.002* 4.8% Separated/divorced 84 (52.2) 77 (47.8)

Single 116 (52.5) 105 (47.5)

Widowed 181 (65.8) 94 (34.2)

Smoker Ex-smoker 605 (62.5) 363 (37.5) 0.018 5.1% Smoker 130 (52.6) 117 (47.4)

Non-smoker 240 (60.9) 154 (39.1)

Language English 908 (62.0) 557 (38.0) <.001* 5.1% Other 69 (47.9) 75 (52.1)

Site location Acute Care Facility 449 (61.3) 284 (38.7) 0.94 0% Community site 591 (61.4) 371 (38.6)

Distance from home to PR site (kms) Median (IQR) 3.8 (1.9–7.2) 4.1 (1.5–7.0) 0.28‡ 0%

Employment status Not working 227 (53.2) 200 (46.8) <.001* 3.4% Retired 480 (65.5) 253 (34.5)

Working 251 (58.2) 180 (41.8)

Age Mean (SD) 68.3 (10.1) 64.3 (12.0) <.001* 0%

Deprivation index Median (IQR) 9 (6–10) 9 (7–10) <.001‡ 0%

BMI Median (IQR) 28 (24–34) 31 (25–39) <.001‡ 3.4%

MRC Mean (SD) 3 (1.2) 3.3 (1.2) <.001‡ 6.0%

Anxiety N 878 421 <.001‡ 23.4% Median (IQR) 6 (3–9) 7 (4–10)

Depression N 876 420 0.005‡ 23.5% Median (IQR) 5 (3–7) 5 (3–8)

FEV1% N 994 553 <.001* 8.7% Mean (SD) 51.5 (18.9) 47.8 (17.7)

6 MWT (m) N 1,030 563 <.001* 6.00% Mean (SD) 336.5 (107.2) 304.8 (116.6)

*The parametric p-value is calculated by two sample t-test for numerical covariates and chi-square test for categorical covariates. ‡The non-parametric p-value is calculated by the Kruskal-Wallis test and Mann-Whitney-U test for numerical covariates and Fisher’s exact test for categorical covariates. KEY: BMI, body mass index; FEV1, forced expiratory volume in one second; IQR, inter quartile range; kms, kilometres; MRC, Medical Research Council Dyspnoea Scale; n, number of patients; PR, pulmonary rehabilitation; SD, standard deviation, 6MWT, 6 minute walk test distance.

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Table 3: Results of univariate logistic regression model showing variables predicting completion at the Better Breathing Pulmonary Rehabilitation Programme.

Variable Levels Odds ratio P value (95% CI)

Gender Female 0.84 (0.67–1.06) 0.15 Male Reference

Ethnicity Asian 0.60 (0.36–0.99) <0.001 Māori 0.34 (0.26–0.46)

Other 1.29 (0.27–6.14)

Pacific Island 0.44 (0.33–0.60)

European Reference

Marital status Married/partnered 1.50 (1.06–2.11) <0.001 Separated/divorced 0.90 (0.56–1.43)

Widowed 1.95 (1.27–2.98)

Single Reference

Smoking Ex-smoker 0.94 (0.71–1.24) 0.218 Smoker 0.73 (0.50–1.06)

Non-smoker Reference

Language English 1.50 (1.01–2.25) 0.046 Other Reference

Site location Community 1.02 (0.81–1.29) 0.872 Acute care facility Reference

Employment status Retired 1.56 (1.18–2.06) 0.002 Working 1.06 (0.78–1.45)

Not working Reference

Age Per year increase 1.04 (1.03–1.05) <.001

Distance from home to PR site Per km increase 0.99 (0.97–1.01) 0.414

Deprivation Per unit increase 0.92 (0.88–0.96) <.001

BMI Per unit increase 0.97 (0.96–0.99) <.001

MRC Per unit increase 0.86 (0.78–0.95) 0.002

FEV1 (%pred) Per 1% increase 1.01 (1.01–1.02) <.001

6 MWT Per 10m increase 1.03 (1.01–1.04) <.001

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Table 4: Results of multivariate logistic regression model showing variables predicting completion of the Better Breathing Pulmonary Rehabilitation Programme for the complete and imputed cases.

Complete cases (n=1,296) Single imputed cases (n=1,508) Variable Odds ratio (95% CI) P value Odds ratio (95% CI) P value

Gender Female 0.97 (0.75, 1.26) 0.83 0.99 (0.78, 1.26) 0.93 Male Reference Reference

Ethnicity Asian 0.84 (0.46, 1.51) <0.001 0.76 (0.45, 1.28) <0.001 Māori 0.47 (0.35, 0.65) 0.44 (0.33, 0.59)

Other 1.23 (0.25, 6.16) 1.30 (0.33, 5.08)

Pacific Island 0.64 (0.44, 0.92) 0.60 (0.43, 0.84)

European Reference Reference

Marital status Married/partnered 1.09 (0.75, 1.59) 0.22 1.11 (0.79, 1.56) 0.29 Separated/divorced 0.74 (0.45, 1.21) 0.79 (0.5, 1.24)

Widowed 1.21 (0.75, 1.97) 1.16 (0.76, 1.79)

Single Reference Reference

Smoking Ex-smoker 0.99 (0.72, 1.35) 0.87 1.12 (0.85, 1.48) 0.29 Smoker 0.91 (0.6, 1.37) 0.88 (0.61, 1.28)

Non-smoker Reference Reference

Language English 1.52 (0.93, 2.49) 0.09 1.78 (1.15, 2.75) 0.009 Other Reference Reference

Site location Community 0.95 (0.74, 1.22) 0.71 0.96 (0.77, 1.2) 0.72 Acute care facility Reference Reference

Employment status Retired 1.03 (0.75, 1.42) 0.76 1.13 (0.85, 1.51) 0.33 Working 1.13 (0.81, 1.59) 1.26 (0.93, 1.71)

Not working Reference Reference

Age Per year increase 1.04 (1.02, 1.05) <.001 1.03(1.01, 1.04) 0.0001

6 MWT Per 10m increase 1.03 (1.02–1.04) <.001 1.03 (1.02–1.04) <.001

KEY: m, metre; 6MWT, 6-minute walk test distance.

In comparing participants who completed working hours, may be less accessible to with those who did not complete the PR the working population. Māori and Pacifi c programme, many factors were signifi cantly Island people tend to develop COPD at an different between the groups. However, earlier age (the average age of onset of COPD when all variables were included in a fully in New Zealand is 70.3 years, but for Māori adjusted model, only three factors were and Pacifi c Island people it is 62.6 and 62.5 identifi ed as independent predictors of years respectively),3 so these populations completion of PR: age, distance walked may be more severely impacted by timing of on 6MWT and ethnicity. Consistent with PR programmes. An increase in fl exibility of other literature,23–26 the results of our study services including; offering classes outside found that patients had a greater like- of working hours, a home-based service and/ lihood of completing the programme as age or a telehealth based programme may allow increased. It is possible that this is related younger participants, who may be working to work schedules. The Better Breathing or looking after dependents, the opportunity programme, which runs during normal to complete PR.

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Patients who walked further in their New Zealand-based studies11,31 are the only 6MWT at commencement of our programme other studies to have specifi cally explored were also more likely to complete the the infl uence of ethnic diversity on partici- programme; this is consistent with other pants’ engagement with PR. We encourage literature.26–28 6MWT distance correlates others undertaking PR programmes with with MRC dyspnoea score and pulmonary ethnically diverse populations to further function testing,29,30 and our study found that explore issues with engagement and non-completers had signifi cantly greater completion of PR programmes and identify dyspnoea and disease severity. These factors factors that may improve these. Levack et may make exercise more challenging, al31 have suggested that indigenous-led PR potentially increasing the likelihood of programmes may overcome barriers for non-completion. Potential strategies to indigenous and minority participants and overcome this challenge for participants the feasibility of this requires further inves- may involve; increased time spent on orien- tigation. Other factors such as the venue in tation to PR including strategies to manage which PR programmes are held—such as a breathlessness, starting exercise at lower Marae—could be important for many Māori intensities and ensuring increased levels participants. Future research should ensure of supervision and/or support for people collaboration with cultural experts, and with lower exercise capacity. The location participants who have attended PR, to work of PR, including access to the building and towards co-design of culturally responsive close parking facilities may also facilitate PR programmes. completion for this group. In our cohort, there was a signifi cant An important fi nding of this study is difference in completion rates between that Māori and Pacifi c Island patients are English and non-English speaking signifi cantly less likely to complete the participants. Indeed, in comparing the char- programme compared with European acteristics of never-attenders with initial patients, supporting the fi ndings of others assessment-only attenders, a large proportion in New Zealand.11 Ethnicity was not signifi - of participants who reported English as a cantly different when comparing attenders second language attended only the initial to non-attenders (p=0.44), but became assessment and did not go to further attend signifi cant when comparing completers to or complete the programme. Additionally, non-completers (p=0.001). When all vari- while in our multivariate regression ables were accounted for, ethnicity was modelling, language was not found to found to be an independent predictor of be signifi cant in predicting completion, completion of PR. This fi nding is important following data imputation speaking English because the CMH population comprises as a fi rst language became statistically signif- large numbers of Māori and Pacifi c Island icant, suggesting this may be a relevant factor people in the community, who are dispro- in completion of PR. Attention should be portionately affected by chronic respiratory given to whether the delivery of programmes diseases in New Zealand.3 The results of this in different languages might improve study, therefore, show that the people who completion rates in non-English speakers, may potentially benefi t from PR the most and this together with how language are those who are least likely to complete aligns with delivering culturally relevant the programme. Differences in attendance programmes should be considered. between people of various ethnicities may Limitations be related to differences in the culture It should be noted that during the period of attendees or of the programme itself. of the study, we implemented several Cultural factors appear to play an infl u- changes arising from quality improvement ential role in how well PR programmes initiatives to the PR programme that may are able to engage with Māori and Pacifi c have infl uenced interpretation. During Island people. Levack et al31 found that this period, the service expanded and the when the cultural needs of Māori attending hospital outpatient programme moved from PR were not addressed adequately, the hospital site to four community venues, patients were less willing to attend those which we considered may better fulfi l the PR programmes.31 To our knowledge, two needs of our population. It is feasible that

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these changes may have impacted on the cases. Furthermore, we acknowledge a results of this study, particularly regarding prospective matched cohort study could distance from home to PR. However, have improved the ability to account for because distance from home to PR was the effect of confounding variables in calculated using each individual’s home our analyses, increasing the confi dence address and their closest PR site, we believe regarding the impact of each of the different that this measure will account for these variables individually. location changes. The nature of the data collection and Conclusion retrieval meant that not all data was Of everyone referred to CMH Better available for all groups. For example, data Breathing PR programme during the period from those who attended the PR programme of our study, only 38% completed the was more extensive than those who did programme. Considering that less than 2% not attend, due to extensive assessment of people with COPD in New Zealand are and monitoring undertaken during the PR referred to a PR programme,10 it is prob- programme. Even following completion of lematic that so few patients are completing the programme, some data was missing on this gold-standard intervention. Age, retrieval, eg, HADS. Reasons for some of 6MWT distance at commencement of PR this missing data could be spoken language/ and ethnicity were important predictors of literacy issues, assessment burden or completion of PR in this population. Strat- clinician or administration error. Where egies to make PR more engaging must be data were known to be missing, impu- considered for varying age groups, those tation of the continuous variables into with poorer exercise tolerance, and, impor- the statistical modelling for analysis was tantly, in different ethnic groups. carried out and compared with complete

Competing interests: Nil. Author information: Sarah Candy, Pulmonary Rehabilitation Coordinator, Respiratory Services, Counties Manukau Health, Auckland; Nicola Jepsen, Physiotherapist, School of Clinical Sciences, Auckland University of Technology, Auckland; Outpatient Cardiorespiratory Physiotherapy, Counties Manukau Health, Auckland; Christin Coomarasamy, Health Intelligence and Informatics, Counties Manukau Health, Auckland; Jonathan Curry, Physiotherapist, Acute Allied Health, Counties Manukau Health, Auckland; Grace Dodson, Physiotherapist, Active Plus Papakura-Counties Care, Auckland; Joe Pomelile, Physiotherapist, Physiotherapy Rehabilitation Group Ltd., Auckland; Mitchel Versey, Physiotherapist, Auburn Street Physiotherapy, Auckland; Julie Reeve, Senior Lecturer, School of Clinical Sciences, Auckland University of Technology, Auckland. Corresponding author: Sarah Candy, Pulmonary Rehabilitation Coordinator, Respiratory Service, Counties Manukau Health, Private Bag 93311, Otahuhu, Auckland 1640. [email protected] URL: www.nzma.org.nz/journal-articles/patient-characteristics-and-predictors-of-completion-of-a- pulmonary-rehabilitation-programme-in-auckland-new-zealand

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REFERENCES: 1. World Health Organisa- the Diagnosis, Management and Amenable Mortality tion. The top 10 causes of and Prevention of Chronic in Counties Manukau: death. http://www.who. Obstructive Pulmonary 2015 Update. Auckland: int/news-room/fact-sheets/ Disease: 2018 Report.; 2018. Counties Manukau Health; detail/the-top-10-causes- http://goldcopd.org/wp-con- 2016. http://www.coun- of-death Published 2018. tent/uploads/2017/11/ tiesmanukau.health. Accessed June 25, 2019. GOLD-2018-v6.0-FINAL- nz/assets/About-CMH/ 2. World Health Organisa- revised-20-Nov_WMS.pdf Performance-and-planning/ tion. Chronic obstructive Accessed February 23, 2018. health-status/2016.09.09-Life-ex- pulmonary disease (COPD). 8. Puhan MA, Gimeno-Santos pectancy-update.pdf WHO. http://www.who.int/ E, Cates CJ, Troosters T. Accessed January 23, 2017. mediacentre/factsheets/ Pulmonary rehabilitation 15. Yang IA, Brown JL, George fs315/en/ Published 2017. following exacerbations of J, et al. COPD-X Australian Accessed February 23, 2018. chronic obstructive pulmo- and New Zealand guide- 3. Telfar-Barnard L, Zhang J. nary disease. Cochrane lines for the diagnosis and The Impact on Respiratory Database Syst Rev. management of chronic Disease in New Zealand: 2016; 12:CD005305. obstructive pulmonary 2016 Update. Welling- doi:10.1002/14651858. disease: 2017 update. Med J ton: The Asthma and CD005305.pub4 Aust. 2017; 207(10):436–442. Respiratory Foundation 9. Keating A, Lee A, Holland doi:10.5694/mja17.00686 of New Zealand; 2017. AE. What prevents people 16. Celli BR, MacNee W, http://s3-ap-southeast-2. with chronic obstructive Agusti A, et al. Standards amazonaws.com/assets. pulmonary disease from for the diagnosis and asthmafoundation. attending pulmonary treatment of patients org.nz/documents/ rehabilitation? A system- with COPD: A summary REPORT-The-impact-on- atic review. Chron Respir of the ATS/ERS position respiratory-disease-in-New- Dis. 2011; 8(2):89–99. paper. Eur Respir J. 2004; Zealand-2016-update.pdf doi:10.1177/1479 23(6):932–946. doi:10.118 Accessed January 24, 2018. 972310393756 3/09031936.04.00014304 4. Milne RJ, Beasley R. 10. Levack WM, Weatherall M, 17. Young P, Dewse M, Fergus- Hospital admissions Reeve R, Mans M, Mauro A. son W, Kolbe J. Respiratory for chronic obstructive Uptake of pulmonary reha- rehabilitation in chronic pulmonary disease in bilitation in New Zealand obstructive pulmonary New Zealand. N Z Med J. by people with chronic disease: Predictors of 2015; 128(1408):23–35. obstructive pulmonary nonadherence. Eur Respir 5. Cooksley NAJB, Atkinson D, disease in 2009. N Z Med J. 1999; 13(4):855–859. Marks GB, et al. Prevalence J. 2012; 125(1348):23–33. 18. Fan VS, Giardino ND, of airfl ow obstruction 11. McNaughton A, Weatherall Blough DK, Kaplan RM, and reduced forced vital M, Williams G, Delacey D, Ramsey SD, the NETT capacity in an Aboriginal George C, Beasley R. An Research Group. Costs Australian population: audit of pulmonary rehabil- of Pulmonary Rehabili- The cross-sectional BOLD itation program. Clin tation and Predictors of study. Respirology. 2015; Audit. 2016; Volume 8:7–12. Adherence in the National 20(5):766–774. doi:10.1111/ doi:10.2147/CA.S111924 Emphysema Treatment resp.12482 12. Counties Manukau Health. Trial. COPD J Chronic Obstr 6. McCarthy B, Casey D, Population Profi le. http:// Pulm Dis. 2008; 5(2):105– Devane D, Murphy www.countiesmanukau. 116. doi:10.1080/15412 K, Murphy E, Lacasse health.nz/about-us/our-re- 550801941190 Y. Pulmonary reha- gion/population-profi le/ 19. Keating A, Lee AL, Holland bilitation for chronic Published 2016. Accessed AE. Lack of perceived obstructive pulmonary February 12, 2016. benefi t and inadequate disease. Cochrane 13. Atkinson J, Salmond C, transport infl uence Database Syst Rev. Crampton P. NZDep2013 uptake and completion of 2015; (2):CD003793. Index of Deprivation. pulmonary rehabilitation doi:10.1002/14651858. Wellington: The Univer- in people with chronic CD003793.pub3 sity of Otago; 2014. obstructive pulmonary disease: a qualitative 7. Global Initiative for 14. Chan WC, Papa D, Winnard study. J Physiother. 2011; Chronic Obstructive Lung D. Life Expectancy, 57(3):183–190. Disease. Global Strategy for Leading Causes of Death

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20. Jatrana S, Crampton P. of factors associated with 36(5):571–578. doi:10.1590/ Primary health care in completion and benefi t S1806-37132010000500008 New Zealand: Who has from pulmonary reha- 31. Levack, Jones B, Grainger R, access? Health Policy. 2009; bilitation in COPD. BMJ Boland P, Brown M, Ingham 93(1):1–10. doi:10.1016/j. Open Respir Res. 2014; T. Whakawhanaungatanga: healthpol.2009.05.006 1(1):e000051. doi:10.1136/ The importance of cultural- 21. Ministry of Health. New bmjresp-2014-000051 ly meaningful connections Zealand Health Survey: 26. Hayton C, Clark A, Olive to improve uptake of Annual data explorer. S, et al. Barriers to pulmonary rehabilitation http://minhealthnz. pulmonary rehabilitation: by Māori with COPD - a shinyapps.io/nz-health-sur- characteristics that predict qualitative study. Int J vey-2016-17-annual-da- patient attendance and Chron Obstruct Pulmon ta-explorer/_w_20da1033/#!/ adherence. Respir Med. Dis. March 2016:489. home Published 2017. 2013; 107(3):401–407. doi:10.2147/COPD.S97665 Accessed January 20, 2018. doi:10.1016/j. 32. Hornikx M, Van Remoortel 22. Hall L. Maori and Pacifi c rmed.2012.11.016 H, Demeyer H, et al. The Peoples’ Housing Needs 27. Bjoernshave B, Korsgaard infl uence of comorbidities in the Auckland Region: J, Jensen C, Vinther on outcomes of pulmonary A Literature Review. Nielsen C. Participation rehabilitation programs Auckland Regional Council; in pulmonary rehabili- in patients with COPD: 2008:1–26. http://knowl- tation in routine clinical a systematic review. edgeauckland.org.nz/assets/ practice: Participation in BioMed Res Int. 2013; publications/Maori_and_ pulmonary rehabilita- 2013:146148-146148. Pacifi c_peoples_housing_ tion. Clin Respir J. 2011; 33. Fischer MJ, Scharloo M, needs_in_the_Auckland_ 5(4):235–244. doi:10.1111/ Abbink JJ, et al. Drop-out region_A_literature_review. j.1752-699X.2011.00237.x and attendance in pulmo- pdf Accessed June 11, 2019. 28. Hogg L, Garrod R, Thornton nary rehabilitation: The 23. Cassidy S, Turnbull S, H, McDonnell L, Bellas role of clinical and psycho- Gardani M, Kirkwood K. H, White P. Effectiveness, social variables. Respir Attendance at pulmonary Attendance, and Comple- Med. 2009; 103(10):1564– rehabilitation classes: tion of an Integrated, 1571. doi:10.1016/j. an exploration of demo- System-Wide Pulmonary rmed.2008.11.020 graphic, physiological Rehabilitation Service 34. Arnold E, Bruton A, and psychological factors for COPD: Prospective Ellis-Hill C. Adherence that predict completion of Observational Study. COPD to pulmonary rehabilita- treatment. Chron Respir J Chronic Obstr Pulm Dis. tion: A qualitative study. Dis. 2014; 11(2):95–102. 2012; 9(5):546–554. doi:10.3 Respir Med. 2006; doi:10.1177/1479 109/15412555.2012.707258 100(10):1716–1723. 972314527469 29. Patel A. Correlation of 35. Cox NS, Oliveira CC, 24. Selzler A-M, Simmonds L, spirometry with six minute Lahham A, Holland AE. Rodgers WM, Wong EYL, walk test and grading of Pulmonary rehabilitation Stickland MK. Pulmonary dyspnea. In: European referral and participation rehabilitation in chronic Respiratory Journal. are commonly infl uenced obstructive pulmonary Vol 46. ; 2015:PA604. by environment, knowl- disease: predictors of doi:10.1183/13993003. edge, and beliefs about program completion congress-2015.PA604 consequences: a systematic and success. COPD. 2012; 30. Camargo LAC da R, Pereira review using the Theoret- 9(5):538–545. doi:10.3109 CA de C. Dyspnea in COPD: ical Domains Framework. /15412555.2012.705365 Beyond the modifi ed J Physiother Elsevier. 25. Boutou AK, Tanner RJ, Lord Medical Research Council 2017; 63(2):84–93. VM, et al. An evaluation scale. J Bras Pneumol. 2010;

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A feasibility study investigating the impact of a dietitian-led low in fermentable oligosaccharide, disaccharide, monosaccharide and polyols diet group education programme with irritable bowel syndrome Dorcas Chan, Paula Skidmore, Leigh O’Brien, Sally Watson, Richard Gearry

ABSTRACT AIMS: To investigate the feasibility and e‘ ectiveness of dietitian-led education on using the low fermentable oligosaccharide, disaccharide, monosaccharide and polyols (FODMAP) diet in adults with irritable bowel syndrome (IBS) in Christchurch, New Zealand. METHODS: Patients with IBS (n=25) were referred by their general practitioner to attend a group education programme. The number recruited and subsequent attendance were used to evaluate feasibility. The Structured Assessment of Gastrointestinal Symptoms (SAGIS) questionnaire and Hospital Anxiety and Depression Scale (HADS) were compared at baseline and at follow-up. Semi-structured telephone interviews assessed the acceptability of the education programme. RESULTS: Of the 25 recruited participants, 17 attended the group education programme. The SAGIS score decreased significantly (p<0.05) between baseline (mean 1.844) and follow-up (mean 0.607). Similarly, there was non-significant trend of lower HADS anxiety and depression scores from baseline to follow-up. Symptomatic improvement was reported by 13 participants (76.5%), while two participants (11.8%) did not improve and two others (11.8%) had not implemented the diet. Overall, participants were positive and grateful for the improvement the diet had made to their symptoms. CONCLUSIONS: A dietitian-led low FODMAP group education programme in Christchurch adults with IBS was found to be both feasible and e‘ ective.

rritable bowel syndrome (IBS) is a com- for presentation to general practice and mon functional gastrointestinal disorder therefore have signifi cant direct and indi- (FGID) that affects 10–20% of the West- rect healthcare costs. I 1,2 ern population. IBS has peak incidence Food has been identifi ed as a symptom in those aged 25–54 years who experience trigger by 70–80% of IBS patients.4 National symptoms such as abdominal pain, diar- Institute for Health and Care Excellence rhoea and constipation that lead to signifi - (NICE) suggest general healthy eating guide- 1,3 cant morbidity and reduced quality-of-life. lines such as having regular meals, adequate FGIDs are one of the most common causes fl uids and reducing intake of caffeine and

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alcohol to improve the management of such an approach was clinically effective IBS.4 A study by Eswaran et al found that and more cost effective than traditional 40–50% of IBS predominant diarrhoea one-to-one education of patients. However, patients (n=92) reported adequate symptom the study did not assess quality-of-life relief with the low fermentable oligosac- or psychometric measures, which are charide, disaccharide, monosaccharide and important aspects of IBS management. polyols (FODMAP) diet or a diet based on In New Zealand, it is estimated that IBS 5 the modifi ed NICE Guidelines. However, affects approximately 10–20% of indi- the low FODMAP diet led to greater viduals.14 The aim of this study was to improvement in bloating and abdominal determine the feasibility and effectiveness 5 pain. There is strong evidence that a diet of a dietitian-led low FODMAP diet group low in fermentable oligosaccharides, disac- education programme in a community charides, monosaccharides and polyols setting in adults with IBS in Christchurch, (FODMAPs) is effective for the management New Zealand. The objectives of the study 6,7 of IBS. The mechanism by which FODMAPs were: 1) examine the practicalities and feasi- contribute to IBS symptoms are well bility of dietitian-led low FODMAP group described. FODMAPs are poorly absorbed in education, 2) assess patients’ gastrointestinal the small intestine and rapidly fermented in symptoms and psychological status before 8,9 the colon. This leads to increased delivery and after attending the education sessions of fl uid to the colon, luminal distension and 3) record patients’ experiences with the 10 and abdominal pain. Observational and low FODMAP diet. randomised controlled trials have shown that approximately 70% of patients expe- rience signifi cant symptom improvement Methods after implementation of a low FODMAP diet Participants and recruitment led by a dietitian.6,7 The primary outcomes of the study were the number of referrals to the education The low FODMAP diet is traditionally programme, types of recruitment method(s), taught in a one-to-one setting by a dietitian attendance rates, and participant accept- using a three-phase approach. First, patients ability of the FODMAP diet and perceived are given in-depth dietary education on changes in IBS symptoms. The study was FODMAP restriction followed by dietary a prospective observational design of 25 elimination of FODMAPs for up six participants recruited to attend one or weeks.11 Patients who achieve symptomatic two education sessions nine weeks apart. improvement are then instructed on how to Baseline characteristics including age, sex, reintroduce individual FODMAPs into the IBS subtype, weight, height and body mass diet while their symptoms are monitored.12 index (BMI) were recorded at baseline. The The overall aim of the low FODMAP diet is study was approved by the Human Ethics to identify the specifi c FODMAPs that trigger Committee of the University of Otago in IBS symptoms while achieving a diverse March 2018 and all participants gave written and nutritionally adequate diet. Due to its informed consent before entering the study. restrictive nature, unguided implementation of the low FODMAP diet has the potential The study was undertaken with the assis- to develop restrictive eating behaviours, tance of the Canterbury Initiative (http:// nutrient defi ciencies and cause problems in www.cdhb.health.nz/about-us/key-proj- specifi c populations such as vegetarians and ects-and-initiatives/canterbury-initiative/). pregnant women. Initially, the study recruited participants from the community using general practices Given the restrictive nature of the diet, the in the surrounding areas of the proposed high prevalence of IBS and the increasing venues. However, only a small number of popularity of the low FODMAP diet, dietetic referrals were received from these prac- capacity in the public health system to guide tices. However, further referrals were individuals through the diet is unable to received following promotion of the study meet demand. To address this problem, on Canterbury DHB websites including King’s College (London) implemented and Community HealthPathways and HealthInfo evaluated a dietitian-led low FODMAP Canterbury (http://www.cdhb.health.nz/ group education programme,13 that showed

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wp-content/uploads/23631e22-health- A semi-structured interview was pathways-healthinfo-programme-profi le. performed by telephone after six weeks to pdf) and in an email newsletter to Pegasus assess the group education sessions and Health practices. resources provided and record the partic- Inclusion criteria for the study were aged ipant’s acceptability and attitudes towards 18 years or older, a diagnosis of IBS predom- following a low FODMAP diet. All the inter- inant diarrhoea (IBS-D) or IBS predominant views were transcribed and a thematic constipation and diarrhoea (IBS-M) made inductive approach used to identify broad 18 by a physician using the ROME IV criteria themes in the responses. and negative coeliac markers.17 Participants If the patient’s symptoms had improved by were excluded if they had infl ammatory ≥50%, they were invited to attend a second bowel disease, IBS with constipation only, group education session. Participants with diabetes mellitus, history of bowel resection, no improvement in symptoms were referred BMI ≤18.5kgm2 or ≥35kgm2, uninten- back to their GP. These 60 minute follow-up tional weight loss, limited comprehension sessions were held nine weeks after the fi rst of English, living in residential care and and focused on how to safely and correctly previous dietetic supervision on the low challenge for each FODMAP group. Partici- FODMAP diet. pants were advised to gradually introduce Group education sessions food containing each FODMAP, starting with small amounts and then increasing intake, A New Zealand registered dietitian with and allow days between each challenge in experience in IBS dietary management led order to monitor symptoms and determine the education sessions. The initial 90-minute their tolerance to the specifi c FODMAP. sessions focused on eliminating high FODMAP foods from the diet for six weeks In both sessions the class was taught and included discussion around how to using a PowerPoint presentation on a overcome common challenges encountered screen projector and given written infor- on a low FODMAP diet. Opportunities for mation to take home. Participants were also engagement between the participants was encouraged to visit websites and web apps encouraged during the session including for meal and recipe ideas such as ‘A Little a label reading group activity. Validated Bit Yummy’ and the Monash University low questionnaires including the Assessment ‘FODMAP Diet app.19,20 of Gastrointestinal Symptoms (SAGIS)16 and Statistical analysis Hospital Anxiety and Depression Scores The SAGIS and HADS data were analysed 17 (HADS) that measured gastrointestinal and using the statistical software programme; psychological symptoms, respectively were IBM SPSS Statistics 25 (1998, 2017, US). The completed prior to the intervention and six SAGIS questionnaire scores were analysed weeks later. The SAGIS questionnaire uses a using paired t-tests, while the HADS fi ve-point rating scale to assess the severity scores were stratifi ed into their domains, of symptoms (no problem=0, mild=1, anxiety and depression an analysed using moderate=2, severe=3 and very severe=4), chi-square and paired t-tests. The study was while the HADS questionnaire utilises a not designed, or adequately powered to test 4-point rating scale of 14 items divided into clinical signifi cance, but only numerical two domains, anxiety and depression. signifi cance (p<0.05).

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Figure 1: Disposition of participants.

n; number of participants, FODMAP; Fermentable Oligosaccharide Disaccharide Monosaccharide and Polyols, IBS; irritable bowel syndrome.

was called into work unexpectedly. The Results baseline characteristics of the 17 partic- Attendance ipants who attended the fi rst education The fl ow of the patients from referral to session participants is shown in Table 1. attendance at the two education sessions is All 17 participants were contacted by a shown in Figure 1. Of the 25 referrals, three member of the research team seven to eight individuals reported they could no longer weeks after the fi rst education session who proceed with the referral, leaving 22 who carried out a semi-structured interview. This were sent a booking for the fi rst education showed 13 participants (76%) had a ≥50% session (elimination phase). However, only improvement in their IBS symptoms, while 17 of these individuals attended the fi rst two participants reported no improvement education session (attendance rate 77%). (12%) and two had not implemented the diet Those who did not attend were contacted (12%). The 13 participants with symptomatic regarding why they could not attend; one improvement were then given a booking participant had not received any infor- for the second education session (Reintro- mation or appointment, one could not take duction phase), although only 11 attended. time off work, and another participant who

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Table 1: Baseline characteristics of study participants.

Characteristics Number of participants n=22 Mean age (years) 34.5

Gender Female 17

Male 5

Ethnicity New Zealand European 22

Other 0

Body Mass Index (BMI)a Normal (18.5–24.9 kgm2) 7

Overweight (25.0–29.9 kgm2) 7

Obese Class I (30.0–34.9 kgm2) 5

Obese Class II (35.0–39.9 kgm2) 0

IBS subtypeb IBS with predominant diarrhoea 10

IBS with diarrhoea and constipation 9

Other conditionsc Headaches 15

Chronic fatigue 6

Back pain 9

Depression 10

Sleep disturbances 9

Anxiety disorders 11

Referral

General practitioner 20

Other health professional 2

n; number, BMI;body mass index (weight (kg) divided by height squared (m)2 ). a n=19. Three participants did not have heights recorded for BMI to be calculated. b n=19. Three participants were unable to be contacted to determine IBS subtype. c n= 18. Based on the SAGIS questionnaires answers completed by participants who returned the first questionnaire.

Semi-structured interviews to a summary of the main and sub themes assess improvements in symptoms identifi ed. Results from the telephone interviews Participants expressed a change in their showed a range of benefi ts in group relationship with food and eating; one education and the general response from expressed that they “defi nitely changed participants about the low FODMAP diet some of my thinking” and another “I’m were positive. Most participants felt that more aware what I’ve been eating but also the information provided at the session was how I’ve been eating”. More effort into meal suffi cient for them to implement the low planning was reported by the participants. FODMAP diet for six weeks. Table 2 shows Most of participants had used the ‘A Little Bit

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Table 2: Summary of themes derived from semi-structured interviews.

Main theme Sub-themes A new way of eating Meal planning Time to prepare and plan meals Regular meal pattern Monitoring FODMAP intake Cooking from scratch

Replacement of foods Replacement of high FODMAP foods with low FODMAP alternative Using alternative flavourings instead of garlic and onion

Eating out Maintaining social norms Uncertainty of FODMAP content in meals eaten away from home

Social support Understanding from family and friends Reinforcement and encouragement from partners/spouse Group education and other participants

Resources Using a readily available app on the go (ie, MONASH low FODMAP app) Using websites (eg, A Little Bit Yummy) for recipe ideas Low FODMAP take home resources provided at the session

Label reading Ease of reading and interpreting nutrition information Aids to label reading—Monash low FODMAP diet app

Yummy’ website, while some had purchased throughout the study. Participants were the Monash app and found its accessibility excluded from fi nal data analysis if they had and convenience to be very helpful: “I down- not attended the fi rst education session or loaded the app, the FODMAP app, it sort of had not implemented the low FODMAP diet gave me enough products on there to give for a minimum of six weeks. me an idea”. Most participants agreed that Table 3 summarises the mean scores of fi nding low FODMAP alternatives for foods the 24 variables in the SAGIS questionnaire that they often ate was really helpful. before and after the group low FODMAP Behavioural change proved to be the diet intervention. There was a signifi cant biggest challenge for most participants. One reduction (p<0.05) in scores for 19 of the 24 participant expressed that “It was harder variables. The symptom with the greatest at the beginning but towards the end it was improvement was bloating (p<0.0001), while quite simple now really”, while another scores for belching, dysphagia, early satiety, reported that “(it was) really just changing loss of appetite and vomiting showed a my habits”. Another common challenge non-signifi cant improvement. faced by the participants included social Anxiety and depression was measured gatherings and eating out, with one stating using the HADS. For both anxiety (11.2 [SD that she “just wanted to fi t in with other 4.3] vs 8.17 [SD 4.2], p<0.001) and depression people” and another saying “they were (7.7 [SD 1.9] vs 5.3 [SD 1.8], p<0.001) there distracted more than anything, conver- was a signifi cant reduction in the total sations happen”. “The garlic and onion scores following the low FODMAP inter- scenario” was a common challenge that vention. However, when analysing these participants experienced both at home and results categorically (using predefi ned eating out. ‘normal’ [<7], ‘borderline abnormal’ [8–11] Symptom-related questionnaires and ‘abnormal’ [>12] categories) there was A total of 32 SAGIS questionnaires and no signifi cant change (p>0.05). 31 HADS questionnaires were collected

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Table 3: Changes in gastrointestinal symptoms following group low FODMAP diet intervention.

Variable Before low FODMAP diet Aš er low FODMAP diet ∆ p-value Mean (SD) Mean (SD) Pain before BM 2.45 (0.93) 0.91 (0.83) 1.55 0.001*

Pain a¤ er BM 2.30 (1.06) 0.80 (0.79) 1.50 0.01*

Di‘ iculty to empty BM 1.91 (1.22) 1.00 (0.89) 0.91 0.04*

Constipation 1.73 (1.19) 0.64 (0.67) 1.09 0.01*

Hard BM 1.55 (1.21) 0.45 (0.52) 1.09 0.03*

Loose BM 2.73 (1.27) 1.09 (0.83) 1.64 0.003*

Incontinence 0.91 (0.94) 0.09 (0.30) 0.82 0.01*

Urgency to empty BM 2.82 (1.17) 1.27 (0.65) 1.55 0.001*

Diarrhoea 2.18 (1.40) 0.91 (0.54) 1.27 0.01*

Abdominal cramps 2.09 (1.14) 0.73 (0.79) 1.36 0.01*

Bloating 3.00 (0.9) 1.09 (0.70) 1.91 0.000*

Excessive gas 2.64 (1.03) 0.82 (0.98) 1.82 0.002*

Loss of appetite 0.73 (1.10) 0.27 (0.65) 0.46 0.14

Sickness 1.09 (1.04) 0.27 (0.47) 0.82 0.02*

Nausea 0.73 (0.91) 0.09 (0.30) 0.64 0.01*

Vomiting 0.27 (0.47) 0.00 (0.00) 0.27 0.08

Excessive belching 1.36 (1.12) 0.18 (0/41) 1.18 0.01*

Belching 0.55 (0.69) 0.18 (0.41) 0.36 0.17

Dysphagia 0.18 (0.12) 0.09 (0.09) 0.09 0.34

Fullness 1.64 (0.81) 0.73 (0.79) 0.91 0.01*

Early satiety 0.73 (0.2) 0.36 0.51) 0.36 0.17

Postprandial pain 1.45 (0.93) 0.55 (0.69) 0.91 0.02*

Epigastric pain 1.55 (1.04) 0.36 (0.51) 1.18 0.01*

Retrosternal discomfort 0.91 (0.94) 0.27 (0.47) 0.64 0.05

*p<0.05.

practice with GPs referring patients directly Conclusions to dietitians. However, we achieved greater To our knowledge, this is the one of the success when using a combination of fi rst studies to formally evaluate the feasi- recruitment strategies such as websites, bility and effectiveness of a dietitian-led clinic visits, and e-newsletters. The atten- low FODMAP group education programme dance rate of 77.3% for the fi rst session for dietary management of IBS. Our results and 85% for the second session are positive support those of Whigham et al and demon- indicators that participants were willing to strate that dietitian-led low FODMAP group attend and were satisfi ed with the education education in a community-based setting is they received. Seventy-six percent of partic- effective and feasible in the management ipants reported ≥50% improvement in their of IBS. IBS symptoms, whereas the remaining Our initial recruitment method was participants did not experience any similar to that currently used in clinical improvement or did not start the diet. These

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participants who do not experience any identifying those participants suitable for improvement were referred back to their group education. general practitioner or health provider for Signifi cant improvements were observed their individualised IBS care. We anticipated in most gastrointestinal symptoms in our that not all patients would improve with a participants, supporting the fi ndings of low FODMAP diet, as similar to other dietary Whigham et al.13 In their study, 54% of therapies, there is evidence that this diet participants were satisfi ed with their gut 21 does not work for every individual. health following the intervention. Compar- Results from the telephone interviews atively, our study found that 87% (13/15) showed that participants were generally of participants who implemented the diet positive and found the group education were satisfi ed with their symptomatic programme enhanced their understanding improvement at the end of intervention. and acceptability of the low FODMAP diet. Our study also found similar symptomatic Our results are consistent with other IBS or improvement comparative to that of tradi- non-IBS group dietary interventions, which tional one-to-one education. Improvements demonstrated that group settings increase in abdominal symptoms such as bloating, patients’ acceptability of the treatment loose bowel motions, stool consistency through sharing of experiences as well and fl atulence in our study were found as comradery with other patients.13,22,23 to be consistent and signifi cant similar to Furthermore, suitable educational resources studies that used the traditional one-to-one as well as references to websites and apps pathway.26,27 also increased adherence and acceptability A positive effect of the group low FODMAP of the low FODMAP diet, a fi nding consistent education programme on psychometric and 25,26 with published literature. Websites and psychosocial measures was also observed web apps such as ‘A Little Bit Yummy’ and in this study. There is limited literature the ‘Monash University Low FODMAP Diet regarding the impact of IBS group education App’ are increasing in popularity as they on anxiety, depression, and health related provide a fast and accessible platform for quality-of-life. Some studies suggest that FODMAP friendly meals and products. individualised dietary education and coun- However, the increase in web-based selling improves patients’ understanding education creates uncertainty and vulner- of IBS and their dietary management of IBS ability for evidence-based advice on low and hence their overall mood and quality-of FODMAP diets, with individuals without -life.28–30 However, Whigham et al did not the necessary expertise possibly delivering measure psychometrics and health-related misleading information. More research is quality of life. In our study, between 45–50% therefore warranted on the effi cacy and of participants reported having anxiety or safety of emerging web-based platforms. depression symptoms prior to entering the Participants who did not start the diet study. Although the anxiety and depression after attending the initial session, expressed scores did not improve signifi cantly, the that they had personal reasons for not doing nature of the intervention, pre-existing so. Suggesting it was not due to the delivery psychological disorders, and the small of intervention, but rather personal reasons. number of participants would not have been Screening for those suitable for one-to-one expected to provide the study with suffi - delivery rather than group delivery should cient statistical power to investigate these be of importance when delivering a group changes. Long-term behavioural therapy, education programme. Whigham et al medications and other strategies besides employed a triage system using a telephone dietary management and a longer follow-up screening clinic to allocate participants’ period may possibly demonstrate more suitability for group versus one-to-one positive changes in mental health and hence education.11 Anecdotal feedback from a HADS scores. dietitian-led low FODMAP group education The mixed methods design of our study session at Christchurch Public Hospital also meant it was possible to assess both the emphasised the need for a more vigorous feasibility and practicality of a low FODMAP screening process. Although our study group education programme. Our quan- employed strict exclusion criterium, tele- titative data needs to be viewed with phone screening may be more useful for caution and interpreted in context with the

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limitations of the study. There was also no of ethnicities and IBS phenotypes should comparator group and participants were not also be examined. Clinical trials powered blinded to the intervention, although this is to determine whether low FODMAP group extremely diffi cult for a whole diet study. education is effective at improving gastro- Despite these limitations, the results are intestinal and psychological symptoms in promising with clinical improvement being patients with functional gastrointestinal seen across a wide range of relevant gastro- disorders such as IBS in a cost-effective way intestinal symptoms. are warranted. Given that this study has demonstrated In conclusion, a dietitian-led low FODMAP that low FODMAP group education in a diet group education programme in community setting is feasible in a New adults diagnosed with IBS-D or IBS-M is Zealand context, future research should an effective and feasible intervention. A investigate the effi cacy of low FODMAP dietitian-led low FODMAP group education group education in terms of reintroduction programme is worthy of consideration in and diet modifi cation. Effi cacy in a range routine clinical practice.

Competing interests: Dr Gearry reports grants from Zespri, grants from AbbVie, outside the submitted work. Ms Watson reports personal fees from Canterbury DHB and personal fees as a self-employed dietitian, outside the submitted work. Acknowledgements: The study would like to acknowledge the participant’s involvement in the study. The study would also like to acknowledge Dr Brett Shand, Clinical Writer and Analyst (Canterbury Ini- tiative) for his expertise and contribution to the writing of this paper. Author information: Dorcas Chan, Human Nutrition and Medicine, University of Otago, Christchurch; Paula Skidmore, Human Nutrition and Medicine, University of Otago, Christchurch; Leigh O’Brien, Human Nutrition and Medicine, University of Otago, Christchurch; Sally Watson, The Canterbury Initiative, Canterbury District Health Board, Christchurch; Richard Gearry, Medicine, University of Otago, Christchurch. Corresponding author: Professor Richard Gearry, University of Otago, 2 Riccarton Ave, Christchurch Central, Christchurch 8011. [email protected] URL: www.nzma.org.nz/journal-articles/a-feasibility-study-investigating-the-impact-of-a-dietitian- led-low-in-fermentable-oligosaccharide-disaccharide-monosaccharide-and-polyols-diet- group-education-programme-with-irritable-bowel-syndrome

REFERENCES: 1. Fass R, Longstreth GF, 3. Hungin APS, Whorwell Kingdom: NICE; 2008 [cited Pimentel M, et al. Evidence- PJ, Tack J, Mearin F. The 2019 July 12]. Available and consensus-based prevalence, patterns and from: http://www.nice. practice guidelines for the impact of irritable bowel org.uk/guidance/cg61 diagnosis of irritable bowel syndrome: an international 5. Eswaran SL, Chey syndrome. Arch Intern survey of 40,000 subjects. WD, Han-Markey T, et al. Med. 2001; 161(17):2081–8. Aliment Pharmacol Ther. A Randomized Controlled 2. Lovell RM, Ford AC. Global 2003; 17(5):643–50. Trial Comparing the Low Prevalence of and Risk 4. National Institute for FODMAP Diet vs. Modifi ed Factors for Irritable Bowel Health and Care Excellence NICE Guidelines in US Syndrome: A Meta-analysis. (NICE). Irritable bowel Adults with IBS-D. Am Clin Gastroenterol Hepatol. syndrome in adults: J Gastroenterol. 2016; 2012; 10(7):712–721. diagnosis and manage- 111(12):1824–1832. ment [Internet]. United

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6. Halmos EP, Power VA, Shep- disorders in New Zealand. Cochrane Database Syst herd SJ, et al. A diet low in J Gastroenterol Hepa- Rev. 2005(2):CD003417. FODMAPs reduces symp- tol. 2011; 26:15–8. 24. Pedersen N, Andersen NN, toms of irritable bowel 15. Schmulson MJ, Drossman Vé gh Z et al. Ehealth: Low syndrome. Gastroenterolo- DA. What is new in Rome FODMAP diet vs Lactoba- gy. 2014; 146(1):67–75.e5. IV. J Neurogastroenterol cillus rhamnosus GG in 7. Staudacher HM, Lomer Motil. 2017; 23(2):151–63. irritable bowel syndrome. MCE, Anderson JL, et al. 16. Koloski NA. The Validity of World J Gastroenterology. Fermentable carbohy- a New Structured Assess- 2014; 20(43):16215–26. drate restriction reduces ment of Gastrointestinal 25. Whelan K, Martin LD, luminal bifi dobacteria and Symptoms Scale (SAGIS) for Staudacher HM, Lomer gastrointestinal symptoms Evaluating Symptoms in MCE. The low FODMAP in patients with irritable the Clinical Setting. Dig Dis diet in the management of bowel syndrome. J Nutr. Sci. 2017; 62(8):1913–1922. irritable bowel syndrome: 2012; 142(8):1510–8. 17. Zigmond AS, Snaith RP. an evidence-based review 8. Barrett JS, Gibson PR. The Hospital Anxiety and of FODMAP restriction, Clinical ramifi cations of Depression Scale. Acta reintroduction and malabsorption of fructose Psychiatrica Scandinavica. personalisation in clinical and other short-chain 1983; 67(6):361–370. practice. J Hum Nutr carbohydrates. Prac Gastro- Diet. 2018; 31(2):239–55. 18. Braun V, Clarke V. Using enterol. 2007; 31(8):51–65. thematic analysis in 26. Harvie RM, Chisholm 9. Undseth R, Berstad A, psychology. Qual Res AW, Bisanz JE, et al. Klow NE, et al. Abnormal Psychol. 2006; 3(2):77–101. Long- term irritable bowel accumulation of intestinal syndrome symptom 19. A Little Bit Yummy. Low fl uid following ingestion of control with reintroduction FODMAP Diet Recipes an unabsorbable carbo- of selected FODMAPs. and Meal Plans- A Little hydrate in patients with World J Gastroenterol. Bit Yummy [Internet]. irritable bowel syndrome: 2017; 23(25):4632–43. New Zealand: A Little Bit an MRI study. Neuro- Yummy; 2019 [cited 2019 27. McIntosh K, Reed gastroenterol and Motil. Jun 3]. Available from: DE, Schneider T, et 2014; 26(12):1686–93. http://alittlebityummy.com/ al. FODMAPs alter 10. Ong DK, Mitchell SB, symptoms and the 20. Monash University (AU). Barrett JS, et al. Manipula- metabolome of patients Monash University Low tion of dietary short chain with IBS: A randomised FODMAP Diet App. Version carbohydrates alters the controlled trial. Gut. 3.0.2. Monash University, pattern of gas production 2017; 66(7):1241–51. 2012. Monash University and genesis of symptoms in Get the App, http://www. 28. Koloski NA, Boyce PM, irritable bowel syndrome. monashfodmap.com/ Talley NJ. Somatization J Gastroenterol Hepatol. ibs-central/i-have-ibs/ an independent psycho- 2010; 25(8):1366–73. get-the-app/ social risk factor for 11. Barett JS. How to institute irritable bowel syndrome 21. Patel SM, Stason WB, the low-FODMAP diet. but not dyspepsia: A popu- Legedza A, et al. The Gastro Hepatol. 2017. http:// lation-based study. Eur placebo effect in irri- doi.org/10.1111/jgh.13686 J Gastroenterol Hepatol. table bowel syndrome 2006; 18(10):1101–9. 12. Barett JS, Tuck C. Re-chal- trials: A meta-analysis. lenging FODMAPs: the low Neurogastroenterol Motil. 29. Moser G, Fournier C, FODMAP diet phase two. 2005; 17(3):332–40. Peter J. Intestinal micro- Gastro Hepatol. 2017. http:// biome-gut-brain axis and 22. Odgers-Jewell K, Isenring doi.org/10.1111/jgh.13687 irritable bowel syndrome. EA, Thomas R, Reidlinger Wien Med Wochenschr. 13. Whigham L, Joyce T, Harper DP. Group participants’ 2018; 168(3–4):62–6. G, et al. Clinical effective- experiences of a patient-di- ness and economic costs rected group-based 30. Kortlever TL, Ten Bokkel of group versus one-to-one education program for Huinink S, Offereins education for short-chain the management of type M, et al. Low-FODMAP fermentable carbohydrate 2 diabetes mellitus. PLoS Diet Is Associated with restriction (low FODMAP ONE. 2017; 12(5):e0177688. Improved Quality of diet) in the manage- Life in IBS Patients-A 23. Deakin T, McShane CE, ment of irritable bowel Prospective Observa- Cade JE, Williams RD. syndrome. J Hum Nutr tional Study. Nutr Clin Group based training Diet. 2015; 28(6):687–96. Pract. 2019; doi: 10.1002/ for self- management ncp.10233. [Epub ahead 14. Wyeth JW. Function- strategies in people with of print] PMID:30644587. al gastrointestinal type 2 diabetes mellitus.

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Are over-the-counter “ sh oil supplements safe, effective and accurate with labelling? Analysis of 10 New Zealand “ sh oil supplements Julia J Rucklidge, Ian C Shaw

ABSTRACT AIM: Fish oil supplements are regulated in New Zealand under the Dietary Supplement Regulations (Section 42, Food Act 1981) and therefore are not subject to the same level of scrutiny and regulations as medicines. We investigated accuracy of labelling, stated health benefits of fish oil supplements sold in New Zealand, and risks relating to possible mercury content. METHOD: The amounts of omega-3 fatty acids contained per capsule were determined by an independent laboratory using gas chromatography on 10 of the most popular over-the-counter fish oil supplements sold in New Zealand and were compared with amounts stated on product labels. Information on doses recommended to achieve a specific health benefit were taken from the 10 labels as well as the company websites. These recommended doses were compared with published recommended doses identified as being e‘ ective in those health areas stipulated on the labels, based on either systematic reviews, meta-analyses and/or consensus statements. Mercury was analysed by an independent laboratory using inductively coupled plasma mass spectrometry. RESULTS: The actual amounts of EPA and DHA per capsule in 90% of the over-the-counter fish oil supplements analysed were within 10% of the amount stated on the product labels. Only one product was greater than 10% below the stated dose on the label. All products suggested benefit across heart, brain and joint health and all but two products stated a range of capsules required to achieve that health benefit (eg, 2–6 capsules). Based on the maximum number of capsules recommended (which ranged from 3–6 capsules), only three products would likely confer the dose identified as optimal for achieving a health benefit across all three health areas. Only two products recommended doses that would likely confer a health benefit both at the minimum and maximum number of capsules. More products would likely benefit brain and heart health than joint health. Mercury was not detected in any sample. CONCLUSIONS: It is reassuring that the doses of 90% of the products were accurate and that mercury was not detected in any sample; however, less than a third of the supplements would likely confer all the health benefits stated, even at the highest recommended daily doses. This paper has highlighted the ongoing challenges associated with the regulation of “health claims” associated with dietary supplements in New Zealand. Indeed, the literature on health e‘ ects is contradictory at best. Clearer definitions of the types of health statements that can be made and the research necessary to support them requires regulatory clarification.

ish oil supplements are among the (DHA) and eicosapentaenoic acid (EPA), most popular dietary supplements play crucial roles in brain development, cell Fon the global market, with use signalling and gene regulation;3-5 they are having increased dramatically over the essential (ie, required in the diet) fatty acids last decade.1,2 In a biochemical context, the (EFAs) because they are not biosynthesised omega-3 fatty acids, docosahexaenoic acid in human cells.5

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There has been an enormous body of Fish oil supplements in New Zealand research exploring the health benefi ts are regulated by the Dietary Supplement (note that “health benefi t” is not being used Regulations 1985 under the Food Act 2014. with any legal or regulatory meaning) of As part of these regulations as well as the EFAs for both physical and mental health. Consumers Guarantees Act 1993, supple- There have been hundreds of clinical trials, ments must be true to label. However, a reviews and meta-analyses documenting study published in 2015 indicated that many the potential benefi ts of omega-3 fatty acids fi sh oil supplements sold in New Zealand in medical conditions, including treatment did not contain the amounts of active of migraine,6 cardiovascular health ingredients stated on labels (only 3 of 32 post-myocardial infarction,7 rheumatoid brands tested contained label amounts of arthritis,8 post-operative immune function9 omega-3 fatty acids),23 raising concern that and treating type 2 diabetes.10 Other supplements are poorly regulated in New studies have shown no clinical benefi t, Zealand.24 Further, the majority of the fi sh such as in the treatment of postoperative oil supplements (83%) analysed by Albert arrhythmias,11 postoperative atrial fi bril- et al23 exceeded recommended oxidation lation,12 dementia13 or acute lung injury.14 levels, meaning they were highly oxidised, Research over the last decade demon- likely due to the oxidative susceptibility of strating the importance of fi sh oil for double bonds in the fatty acid chain. The mental health and supplementing the diet implication for consumers is that the actual with EFAs has emerged as a promising daily intakes may be too small to confer therapy for the management/treatment health benefi ts. of psychiatric disorders, both as a mono- In considering health benefi ts, the form therapy and as adjunct to medications, to of the EFAs is important. In fi sh oil supple- reduce the risk of developing psychosis,15 ments, the omega-3 fatty acids are either as treat attention-defi cit/hyperactivity disorder triglycerides or ethyl esters (Figure 1). Ethyl (ADHD),16 anxiety,17 and assist with the esters are more common probably because management of mood disorders.18–20 On the they are cheaper to produce.25 Following a other hand, no effects have been observed refi nement process, the fatty acids may be for the treatment of symptoms associated present as free fatty acids, ethyl esters or with autism21 and tics.22 re-esterifi ed triglycerides, which leads to

Figure 1: Conversion of omega fatty acid ethyl esters to triglycerides by gut bacteria.

Triglycerides are well absorbed in the gut, but ethyl esters are poorly absorbed. For high omega fatty acid supplements: R = omega fatty acid (eg, ALA); the R groups in a tryglyceride might be di‘ erent (eg, ALA, DHA).

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questions about the quality and bioavail- depression should be 1–2g of net EPA daily, ability of this highly refi ned and ostensibly from either pure EPA or an EPA/DHA (>2:1) synthetic product. formula.30 A 2018 meta-analysis concluded EFA ethyl esters are manufactured that the dose of EPA should be ≥0.5g/day by trans-esterifi cation of natural EFA to be most likely to confer benefi t for the 16 triglycerides. The resulting ethyl esters are management of ADHD symptoms. distilled at low pressure (molecular distil- In addition to health benefi ts, it is also lation) to enhance the omega-3 ethyl ester important to consider health risks. In the content by removing short chain fatty acid case of fi sh oil consumption, the most signif- ethyl esters. However, research has shown icant toxicological risk relates to organic + that EFA ethyl esters are less well absorbed mercury (eg, methyl mercury—CH3Hg ) than natural EFA triglycerides, as they must contamination—organic mercury is neuro- be reconverted to triglycerides to enable toxic and lipid soluble and so concentrates intestinal absorption.25,26 Poor absorption up the food chain particularly into oily fi sh.31 has important implications for the bioavail- Oily fi sh species (eg, sardines, pilchards) are ability of fatty acids derived from fi sh oil often used for fi sh oil manufacture. and supplement effectiveness. We are aware of only one study that inves- In addition to actual EPA and DHA capsule tigated mercury in over-the-counter fi sh content, whether the consumed dose will oil supplements.32 Analysis by cold vapor confer a stated health benefi t is important atomic absorption spectrometry revealed and has not been systematically researched that all fi ve supplements studied contained for accuracy. Labels on fi sh oil supplements insignifi cant amounts of mercury with levels typically provide information on the recom- ranging from <6µg/L to 12µg/L.32 However, it mended daily dose to give a health benefi t. is the form of mercury that is toxicologically + The most common benefi ts on labels of fi sh important. Organic mercury (eg, CH3Hg ) is oil supplements are improved heart, joint far more toxic than inorganic mercury (Hg+ and brain health—DHA and EPA doses are or Hg2+) because it forms a cysteine complex particularly important for these health which mimics methionine and crosses the benefi ts. By law, the label cannot stipulate blood brain barrier.33 Inorganic mercury is a therapeutic claim (as that would make it less neurotoxic as it is unable to effi ciently a medicine) and therefore, interpretation cross the blood brain barrier.34 of the intention of the stated health benefi t The aims of the current research were is obscured. However, the only way to to investigate whether the EPA and DHA learn about potential health benefi ts and content of the top 10 dietary fi sh oil supple- optimal doses would be through published ments sold over-the-counter in New Zealand clinical trials, systematic reviews and are accurate (as determined through meta-analyses. analysis of fatty acid composition), contain EPA and DHA doses used in clinical trials low mercury levels, and whether the recom- vary considerably with concomitant effect mended daily doses for a health benefi t are discrepancies; however, published recom- consistent with the doses determined to be mendations have been made on optimal effective based on meta-analyses, systematic doses for conferring benefi t for specifi c reviews and/or consensus statements. health conditions. For example, a 2017 meta- analysis27 and 2018 review7 identifi ed 1.0g/ Methods day EFAs (EPA+DHA) as more likely to be helpful for improving cardiovascular health Selection of the top 10 fish oil post-myocardial infarction (MI). Two meta- supplements sold in New Zealand analyses have identifi ed that ingestion of A fi sh oil dietary supplement for the EFAs (EPA+DHA) at a dose ≥2.7–3.0g/day is purpose of this study was defi ned as any more effective in improving painful and/or product consumed orally that was labelled tender joints compared with <2.7g/day.8,28 ‘fi sh oil’, ‘odourless fi sh oil’ or ‘omega-3 For brain health, the greatest amount of fi sh oil supplement’ and contained EPA and positive evidence is for mood disorders and DHA from the bodies of deep-water fi sh (ie, ADHD.29 A 2019 consensus paper identifi ed sardines, pilchards, anchovies, mackerel, that the optimal dose for the treatment of tuna) or farmed salmon. Marine oils from

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alternative sources (eg, krill, calamari, (GLP) accredited laboratory approved by algae) were omitted due to their composi- International Accreditation New Zealand tional differences. Similarly, plant sources (IANZ). This accreditation denotes that the of omega-3 (eg, fl ax, chia seeds, walnuts, analytical methodology has been validated rapeseed) fell outside the scope of the to determine between sample and within current study. sample analytical variability, and that all All fi sh oil supplements that were quantitative laboratory equipment (eg, available over-the-counter in supermarkets, balances) is regularly calibrated in accor- pharmacies and health stores in New dance with approved Standard Operating Zealand were eligible for inclusion in the Procedures and that readings (eg, mass) study; however, we asked for assistance variability is within pre-defi ned acceptable from local companies (Foodstuffs New limits. Zealand Ltd, Progressive Enterprises Ltd, In brief: approximately 0.025g of fi sh Green Cross Health Ltd, and Health 2000 oil from each capsule was accurately Retail Ltd) to determine the top 10 best weighed into a glass vial containing 25mg sellers based on sales information from hexacosanoic acid (C23:0) methyl or ethyl these companies. Fish oil supplements were ester (internal standard) in 2,2,4-trimeth- purchased over-the-counter from stores ylpentane. Samples were derivatised to owned and operated by Foodstuffs New methyl esters, separated on a capillary GLC Zealand Ltd and Green Cross Health Ltd, column, and peaks detected by a fl ame including Life Pharmacy, Amcal, and PAK’n ionisation. GLC peaks were identifi ed using SAVE supermarket. Products with a use by EPA and DHA authentic standards; retention date between 15 and 35 months from the times were expressed relative to the internal date of purchase were selected. standard for identifi cation purposes. Peak The ingredients and recommended daily areas were used to determine EPA and DHA dosage to confer health benefi ts for each concentrations. Results were expressed as supplement were recorded, including amount (mg) of EPA and DHA per capsule the batch number and country of origin. (ie, taking account of different fi sh oil Possible health benefi ts were based on the weights per capsule for different products). label statements as well as statements on Individual samples were analysed (ie, no the manufacturers’ New Zealand websites, replicates); however, each batch of analyses and the range in the number of capsules included at least one sample in duplicate recommended for each health benefi t was to check within sample variability. All noted. These stated health benefi ts and duplicate samples analysed fell within doses were confi rmed as up-to-date as of 24 AsureQualities repeatability criteria. November 2019. Analysis of mercury in fish oil Collection, storage and analysis of supplement samples fish oil samples Mercury was determined by inductively Fish oil supplements were purchased in coupled plasma mass spectrometry (ICP-MS) April 2015, they were stored in the dark at by Hill Laboratories Ltd (GLP accredited, <30°C to minimise oxidative and light-in- IANZ approved). The American Public duced changes. Three capsules from each Health Association (APHA) Standard Method 36 fi sh oil package were analysed within three 3125B was used. In brief: fi sh oil samples months of purchase. The samples were were acid digested (nitric acid + hydro- coded so that the analyst did not know the chloric acid, 85°C, 1 h) and the acid extract product identity. analysed directly by ICP-MS. Analysis of fish oil supplement samples for omega-3 fatty acids Results The contents of three fi sh oil capsules Top 10 over-the-counter fish oil were pooled and an aliquot analysed by supplements sold in New Zealand gas liquid chromatography (GLC) for EPA The top 10 fi sh oil supplements sold in and DHA using AOAC Offi cial Method New Zealand were identifi ed (brand names 991.39 35 by AsureQuality Ltd, Auckland, are not reported here for commercial a New Zealand Good Laboratory Practice reasons) and purchased.

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Analysis of omega-3 fatty acids below the label amount for DHA. All fi sh oil in the top 10 fish oil supplement supplements analysed contained greater amounts of EPA than DHA. Using 10% as an samples accepted range of error (this also accounts The analytical laboratory (AsureQuality) for the analytical method’s uncertainty of carried out in batch and between batch measurement of 7.2%, and is consistent with replicates of samples to determine analytical TGA regulations on standards for capsules variability. Their results are as follows: and tablets that state they must be above repeatability ±5%, reproducibility ±12%, 90% of the stated content);37 using this defi - and uncertainty of measurement ±7.2%. The nition, 90% of the products were true to label limit of detection of the analytical method is in terms of capsule EPA and DHA content. 6mg/100g, and the limit of quantifi cation is 10mg/100g. Recommended daily doses of the Table 1 shows the label amounts of EPA 10 supplements for conferring a and DHA and the actual amounts based on health benefit our analyses. The percentage differences To determine whether doses contained between actual amount and label amount within the supplements are comparable of EPA and DHA range from 2.8% above to those doses identifi ed in the published the label amount to 11.1% below the label literature as most likely to achieve a health amount for EPA, and no difference to 12.5% benefi t, we calculated the doses of EPA

Table 1: Doses (label and actual) of 10 supplements (brands) sold in New Zealand and daily doses for health benefi t based on label recommendations.

Brand EPA EPA EPA DHA DHA DHA Label recommended Total recommended dose range2 Label Actual Label- Label Actual Label- daily dose for health mg mg/ mg/ Actual mg/ mg/ Actual eΠects cpsl cpsl DiΠ1 cpsl cpsl DiΠ1 Number of capsules % %

Heart Joint Brain Heart Joint Brain Brain EPA+DHA EPA+DHA (mood) (ADHD) EPA only EPA only

1 180 181 +0.6 120 114 -5.0 1–3 1–3 1–3 300–9003 300–900 180–540 180–540

2 180 184 +2.2 120 119 -0.8 3–6 6 3–6 900–1,800 1,800 540–1,080 540–1,080

3 270 273 +1.1 180 171 -5.0 2–4 4 2–4 900–1,800 1,800 540–810 540–810

4 270 266 -1.7 180 174 -3.3 1–3 1–3 1–3 450–1,350 450–1,350 270–810 270–810

5 180 177 -1.7 120 118 -1.7 1–3 1–3 1–3 300–900 300–900 180–540 180–540

6 360 352 -2.2 240 228 -5.0 3 5 3 1,800 3,000 1,080 1,080

7 275 281 +2.0 185 175 -5.3 1–3 1–3 1–3 460–1,380 460–1,380 275–825 275–825

8 360 320 -11.1 240 210 -12.5 1–3 1–3 1–3 600–1,800 600–1,800 360–1,080 360–1,080

9 270 278 +2.8 180 171 -5.0 2–4 6 2–6 900–1,800 2,700 540–1,620 540–1,620

10 360 360 0.0 240 240 0.0 3 5 3 1,800 3,000 1,080 1,080

Number of products likely to be e ective for health benefit based on published recommended 2/10 (lower) 3/10 2/10 (lower) 5/10 (lower) doses. to 8/10 to 5/10 to 10/10 (upper) (upper) (upper)

BOLD: Doses likely to be e‘ ective based on comparison with published recommendations on dose across heart (≥1g EPA+DHA7,27), joint (≥2.7g EPA+DHA8,28) and brain (≥1g EPA for mood30 and ≥500mg EPA for ADHD16). Actual amounts have been rounded to the nearest whole number. Grey boxes identify those two products that recommend a daily dose within the same ranges as those identified as e‘ ective in the published literature across heart, joint and brain. 1(Label-Actual)/Label x 100% 2Label dose x number of capsules recommended. Range based on number of capsules recommended on product labels. 3Example: (180mg+120mg)x3=900mg Abbreviations: cpsl = capsule, di‘ = di‘ erence

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and DHA based on the number of capsules Amounts of mercury in fish oil recommended. The daily dose was deter- supplements mined by using both the lowest and the Measurement of mercury showed no highest recommended daily dose given on mercury above the limit of detection (LoD); the specifi c labels (eg, if the label stated 0.010 mg/kg; ie, not detected. Therefore, the take 2–4 capsules for brain health, we used mercury levels were below WHO provi- two capsules and four capsules as the daily sional tolerable weekly intakes.38 lowest and highest number of capsules for ‘brain’ respectively) and was calculated based on label content of omega-3 fatty Discussion acids per capsule. EPA dose alone was also Label vs actual content of omega-3 calculated as EPA dose alone is relevant for fatty acids in fish oil supplements supporting symptoms associated with mood The actual amounts of EPA and DHA per and ADHD. capsule in all but one of the over-the-counter The health benefi ts stipulated across fi sh oil supplements analysed were within the 10 supplements were similar, with 10% (which takes account of the analytical all of them reporting promotion of heart uncertainty of measurement of ±7.2%) of health, joint health and brain function on the amount stated on the product labels. A the labels and/or manufacturer websites. single product had EPA/DHA doses greater Stated benefi ts varied from “assists in the than 10% below the stated dose on the label. maintenance of healthy brain function” to Only one sample was analysed per product; “helps during times of stress and emotional therefore, it is not possible to determine upset” to “keeping your heart healthy” within brand variance. to “easing many kinds of infl ammation, These results are not consistent with the including joint swelling and stiffness”. As results of Albert et al,23 in that 90% of the of 24 November 2019, none of the labels products were true to label versus 10% or company websites referred to specifi c of those tested by Albert et al.23 This also research that supported the stated health means that there was likely very much less benefi t; however, this is not a regulatory oxidation in our samples (although we did requirement for dietary supplements. not measure it). It is possible that in the All products taken at the highest recom- intervening year since the Albert et al23 mended daily dose contained more than study was published, the industry addressed 500mg of EPA and as such could support the labelling issues. It is also possible that symptoms associated with ADHD,16 50% the popular brands that we studied were not of them taken at this highest dose would on the shelf for as long as other less popular contained the minimal dose (≥1g EPA)30 brands that might have been included in the identifi ed for supporting mood, 80% of Albert et al study,23 allowing for less time for the products had doses comparable to oxidation to occur. Indeed, two more recent the recommended dose for heart health studies39,40 showed that Australian and (≥1g EPA+DHA),7,27 and 30% contained the New Zealand fi sh oil products did meet the optimal dose for assisting with joint health stated doses on their labels for EPA and DHA (≥2.7g EPA+DHA).8,28 Based on the lowest content, and were not oxidised, although the recommended daily doses, 50% were in methodology used has been challenged.41 the range necessary to confer a benefi t for It is possible that omega-3 fatty acids symptoms associated with ADHD, 20% were might be lower than those stipulated on the in the dose range for heart health and mood, labels because unsaturated fatty acids are and 30% were in the dose range for joints. vulnerable to oxidation due to the double At the highest recommended dose, three bonds in the fatty acyl chain23 which can (Brands 6, 9 and 10) of the products (30%) undergo an ultra violet light catalysed would confer a health benefi t across all oxidative free radical reaction. Indeed three areas of function. Only two products Albert et al23 explained the discrepancy (Brands 6 and 10—Table 1) recommended between label and actual omega-3 fatty doses that matched research doses identifi ed acid levels in their study by the presence of as necessary in order to confer a health oxidation products. In addition, the legis- benefi t both at the minimum and maximum lation requires data from a pooled sample of number of capsules (Table 1).

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20 capsules, whereas we analysed three indi- blood pressure, modifying cholesterol levels, vidual capsules from the same purchased and ‘brain’ could mean improved cognitive container. Bearing this in mind, in our study function or mood or reduce anxiety. we found only one product (Brand 8; Table Therefore, this aspect of our discussion is 1) with marginally lower EPA and DHA than indicative and not defi nitive. Further, the stated on the label and therefore we do not samples range from children to adults and a think it necessary to consider the toxico- dose that may confer a health benefi t for an logical implication of unsaturated fatty acid adult may not necessarily apply for children oxidation products in the context of the top and vice versa. 10 fi sh oil supplements sold in New Zealand. Even the results on a specifi c dose are Health benefits mixed with some studies showing benefi t We investigated whether the recom- and others not. For example, a 2017 meta- mended doses on labels of these 10 analysis42 did not fi nd a signifi cant benefi t over-the-counter supplements are in line of a dose ≥2.6g/day for assisting with the with the amounts shown to provide optimal reduction of arthritic symptoms, but the health benefi ts based on research. Based authors admit signifi cant discrepancies on the highest recommended daily doses, between the individual studies used in their the doses of all 10 products are within the analysis. Further, their analysis showed ranges used in clinical studies that have that EFAs are effective in pain reduction been effective in treatment of symptoms in rheumatoid arthritis, but not in osteo- associated with ADHD (≥0.5g EPA16) but arthritis.42 A much higher dose may be only half contained doses recommended required to be effective in the management for supporting mood (≥1g EPA30). Eighty of hypertension,43 highlighting the diffi culty percent of products sampled used doses in determining effects and effective doses. recommended for support of cardiovascular There is also disagreement on overall health health (1g EPA+DHA/day7,27) whereas 30% benefi ts across meta-analyses; for example, contained the dose identifi ed to be of benefi t a 2018 meta-analysis identifi ed that omega-3 for joint health (≥2.7–3g EPA+DHA8,28). capsules do not reduce heart disease, stroke However, for the lowest recommended daily or death,44 while a 2019 meta-analysis iden- dose, 50% would be adequate for ADHD, tifi ed that marine omega-3 supplementation 20% for cardiovascular health and mood, does lower risk of myocardial infarction and and 30% for joints. Therefore, in order for other cardiovascular outcomes.45 What is the consumer to increase the opportunity clear is that the EFA/health benefi ts interface for a health benefi t to occur, it would be is a minefi eld of conjecture. best to consume at least the highest number The effective dose of ≥0.5g EPA for ADHD of capsules recommended, albeit in some symptoms does not refl ect the fact that many cases, this would mean taking up to six fi sh of the studies have included DHA in their oil capsules per day. formulae which may also be important.16 In interpreting these health benefi ts, it is Further, the positive effect of EFAs for ADHD important to note based on the published has only been observed for parent ratings literature we reviewed and cited that not ratings by teachers.29 Lower doses than there is large variability in doses and those identifi ed in the literature as optimal measures used in clinical research across may confer a benefi t, although the oppor- the conditions investigated. It is important tunity for benefi t diminishes the further the to recognise that the conditions studied dose is away from that identifi ed as optimal. (heart, joint, brain) cover myriad health However, one observation that is consistent problems and therefore it is diffi cult to across all three health areas we explored identify optimal effective doses for specifi c (brain, heart, joint) is that there appears disorders. Indeed, it is equally diffi cult to to be a linear dose-response relationship defi ne the broad disorders covered; for between omega-3 supplementation and example ‘joint’ could refer to osteo- or outcome. As such, the doses we identifi ed rheumatoid arthritis or other non-arthritic through the literature appear reasonable disorders, ‘heart’ could mean prevention targets to optimise the opportunity of a of cardiovascular infarction, lowering high health effect to occur.

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Importantly, the doses used in the to keep up with the research underpinning research were at least of the same the statements and leaving it open for magnitude as those recommended in the dispute as to what constitutes a reasonable daily doses of the over-the-counter supple- health benefi t. Better regulation of “health ments we studied. Previously, we found claims” for dietary supplements and the that B vitamin doses from over-the-counter research necessary to support these state- products are signifi cantly below the thera- ments is clearly overdue.24 A starting point peutic doses used in clinical studies for the could be for manufacturers to list on labels treatment of mental health conditions in and websites the source of the evidence to children.46 It is reassuring that this is not the support any stated health benefi t. case for EFAs. Risks This research highlights the challenges of Our studies showed that mercury levels labelling for supplement manufacturers in in fi sh oil supplements analysed were terms of health benefi ts and exposes that the <0.010mg/kg (ie, LoD). Thus, there is no or law as it stands, encourages vague state- negligible risk of mercury toxicity from ments that are very diffi cult to substantiate over-the-counter fi sh oil supplements. and tie to any specifi c clinical literature. The most common and simplest way to Conclusion determine whether a product has conferred This study suggests that the majority a health benefi t is to study people who of the 10 most popular fi sh oil supple- have a disease and then track whether that ments sold in New Zealand are true to disease improves following supplement label based on dose but mixed in terms of consumption. A “health benefi t” could potential health benefi ts they might confer. relate to prevention of a disease devel- Overall, if maximum recommended daily oping, reduction of mild symptoms or doses of supplements are taken (as recom- improvement in those with no disease or mended on the label), most products may symptoms. Defi nitive effi cacy studies for confer health benefi ts for brain and heart prevention are very challenging to conduct health, but probably not joint health. In and to verify proof of an effect. Investiga- this respect, only two products were true tions of healthy populations typically result to label and would likely confer a health in null effects due to participants having no benefi t across heart, joint and brain across room for improvement. As a result of this both minimum and maximum daily dose. diffi culty, the interpretation that a health However, mercury was not found in any of benefi t results from research on people with the samples analysed which suggests that symptoms is reasonable. Further, the fi eld is the risk of mercury toxicity is negligible and moving so quickly such that health benefi ts therefore, while they may not all confer a observed in early trials are not always repli- health benefi t, they are safe to consume. cated in later trials, making it a challenge

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Competing interests: Nil. Acknowledgements: We thank the School of Psychology, Speech and Hearing and the School of Physical and Chemical Sciences, University of Canterbury for assistance with funding this work. We are grateful to Peter Harris LLM for his advice on legal and regulatory aspects of dietary supple- ments. We acknowledge Shelby Hantz’s MSc thesis which led to this paper. Author information: Julia J Rucklidge, Professor of Clinical Psychology, School of Psychology, Speech and Hearing, University of Canterbury, Christchurch; Ian C Shaw, Professor of Toxicology, School of Physical and Chemical Sciences, University of Canterbury, Christchurch. Corresponding author: Julia Rucklidge, School of Psychology, Speech and Hearing, University of Canterbury, Christchurch. [email protected] URL: www.nzma.org.nz/journal-articles/are-over-the-counter-fi sh-oil-supplements-safe-effective- and-accurate-with-labelling-analysis-of-10-new-zealand-fi sh-oil-supplements

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36. American Public Health Polyunsaturated Fatty Acid 44. Abdelhamid AS, Brown TJ, Association (APHA) Content and Oxidation Brainard JS, et al. Omega�3 Standard Method 3125B State of Fish Oil Supple- fatty acids for the primary 37. Therapeutic Goods ments in New Zealand. and secondary prevention (Standard for Tablets, Sci Rep. 2017; 7:1488. of cardiovascular disease. Capsules and Pills) (TGO 41. Albert BB, Derraik JGB, Cochrane Database of 101) Order 2019 Section Garg ML, Cameron-Smith Systematic Reviews. 2018. 14(5) http://www.legis- D, et al. Concerns with 45. Hu Y, Hu FB, Manson lation.gov.au/Details/ the Study on Australian JE. Marine Omega-3 F2019L00369 (Date of and New Zealand Fish Oil Supplementation and access: 04/12/2019) (2019). Products by Nichols et al. Cardiovascular Disease: An 38. World Health Organi- (Nutrients 2016, 8, 703). Updated Meta-Analysis of zation. Summary and Nutrients. 2017; 9:137. 13 Randomized Controlled conclusions – 73rd meeting 42. Senftleber NK, Nielsen Trials Involving 127 477 of the joint FAO/WHO SM, Andersen JR, Bliddal Participants. J Am Heart Expert Committee on Food H, et al. Marine Oil Assoc. 2019; 8:e013543. Additives. Rome, 2010. Supplements for Arthritis 46. Rucklidge JJ, Harris 39. Nichols PD, Dogan L, Pain: A Systematic Review AL, Shaw IC. Are the Sinclair A. Australian and Meta-Analysis of amounts of vitamins in and New Zealand Fish Randomized Trials. commercially available Oil Products in 2016 Meet Nutrients. 2017; 9:42. dietary supplement Label Omega-3 Claims 43. Matstomo T Potential formulations relevant and Are Not Oxidized. benefi ts of garlic and other for the management of Nutrients. 2016; 8:703. dietary supplements for the psychiatric disorders in children? N Z Med J 40. Bannenberg G, Mallon C, management of hyperten- 2014; 127(1392):73–85. Edwards H, Yeadon D, et sion (Review) Exp Ther al. Omega-3 Long-Chain Med. 2020; 19:1479–1484.

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Hui: a partnership in practice in familial hypercholesterolemia Jocelyne Benatar, Tara Elville, Helen Wihongi, The Whānau

ABSTRACT AIMS: To empower a large whānau (extended family) with a history of severe premature heart disease and familial hypercholesterolemia (FH). METHODS: A¤ er broad consultation a Hui was held to discuss how to better manage this issue to ensure present and future generations were appropriately screened and treated. RESULTS: A closed social media page with detailed information on how to manage and screen FH that includes a family tree (for those who consent) has been created. The whānau, facilitated by health professionals, have ownership of their health. This has led to an uptake of screening and treatment for FH with whānau who are now able to inform local health professionals about their disorder. CONCLUSION: FH is the most common dominant genetic disorder in humans and causes premature heart disease and death. Current approaches are dependent on index patients presenting for cascade screening and do not incorporate the needs and views of the extended whānau. Establishing a partnership with the whānau and giving back control of health information is crucial to ensure equity. A national systematic programme is also needed to manage this condition with important health outcomes that can be averted if treated from a young age.

amilial hypercholesterolemia (FH) is members are incorrectly classifi ed based on the most common dominant genetic cholesterol testing alone.7 Treatment of gene Fdisorder in humans and causes prema- positive offspring is recommended to start at ture heart disease and death. The incidence the age of 8–10 years with the aim of reach- of heterozygous FH in the general global ing a target LDL-c <3.5mmol/L or to less than population is 1:250;1 however, rates in Māori 50% if the target is not achievable.6,8 Early are not known. It is characterised by very identifi cation of FH in children is vital as high-level low-density lipoprotein-cholester- children with FH can have normal life ex- ol (LDL-c), systemic manifestation of choles- pectancies if treatment is started early.9 The terol deposition (tendon xanthoma, xanth- most common mutation causing FH is in the lasma and arcus cornealis). Three clinical LDL receptor, identifi ed in ~90% of cases. defi nitions for FH are used to identify people The LDL receptor mediates endocytosis of with possible FH;2–4 the most commonly LDL-c into cells including hepatocytes. used are the Dutch Lipid Clinic and Simon A number of medications are recom- 5 Broome criteria. Early detection and treat- mended to treat FH; intensive statin therapy, ment of individuals with this disorder is im- ezetimibe and protein convertase subtilisin/ portant to prevent the early development of kexin type 9 (PCSK9) inhibitors. At present, cardiovascular disease. Current guidelines New Zealand has a limited range of drugs recommend screening of high-risk individ- to treat hypercholesterolemia. For example, uals, and then cascade screening of family rosuvastatin, the most potent statin, or 6 members in childhood. Cascade screening PCSK9 inhibitors are not funded for FH, using the genetic test is recommended once limiting choice in individuals at very high the proband for DNA testing is identifi ed. risk of premature heart disease (See Figure Studies have shown that 15–20% of family 1, patient experience). Studies suggest that

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Figure 1: Patient experiences.

I am a very physically active and fit woman in my early 30s. My cholesterol levels were well controlled on the atorvastatin and ezetimibe tablets, but I had extreme fatigue and a ‘cloudy mind’. I would sleep from 3pm to 6pm, eat my dinner and sleep right through the night. If I exercised it would take my body two days to recover from fatigue. I was experiencing short-term memory loss consistently every day. At first I thought it was lack of sleep or ‘mummy brain’. I was unable to hold conversations with people because my mind couldn’t keep up. A lot of conversations went over my head. Because of all these symptoms I decided to try Rosuvastatin, which is not funded. I had none of the previous symptoms; however, I experienced di‘ iculty with the monthly price. And because the price kept increasing and I was unable to a‘ ord this. I stopped it altogether a¤ er the second month. Unfortunately, my cholesterol levels were high, so I restarted rosuvastatin. Realistically because of the price, I probably will eventually end up back on atorvastatin and it scares me. I’m afraid of what it’s going to do with my brain as I age.

expensive medications like PCSK9 inhibitors department at Auckland City Hospital with are cost effective as they signifi cantly reduce very high LDL-c; one male in his early 30s cardiovascular events in FH.10 with signifi cant atherosclerosis requiring LDLR:c.2312-3C>A splicing stents and two females in their 20s with tendon xanthomata. They all told a story mutation of a large extended whānau affected by A specifi c mutation in the LDL receptor, premature heart disease with high rates LDLR:c.2312-3C>A splicing mutation, was of premature death. They remembered described in a Māori man who was working the endocrinologists that had visited the in western Australia who presented with whānau about 15 years earlier who had coronary artery disease in his 30s. He had taken samples, but they were not sure of a strong whānau (extended family) history the diagnosis. Contact was made with the of premature death from heart disease.11 He Christchurch Laboratory who had records of described a whānau blighted by premature an identifi ed LDL-c receptor mutation in this heart disease and death and a whānau whānau. Confi rmation of the presence of the legend of “a white woman” who had same mutation was made in the three index married their Māori ancestor at the turn of patients. This revealed issues in the health the 20th century who had “brought a curse system in terms of systemic screening and on them”. The gene has been traced back to treatment of whānau now scattered across whānau with origins in Valencia (in eastern the country and the world. Spain), with an ancestor moving to northern France during the 1600s. Descendants then The consequence of a lack of a national migrated to England, and subsequently strategy for FH has resulted in a frag- to New Zealand whereupon one ancestor mented and disparate service for patients married a Māori man and then moved to in (Figure 2, practice nurse experience). There a remote area of New Zealand. This union are pockets of experts in some places, resulted in a very large whānau affl icted but there is also little awareness of how with premature heart disease and death. to treat and manage this condition in the Endocrinologists visited this remote area general medical community. For example, and tested a number of members of the few clinicians without a specifi c interest whānau and confi rmed the presence of this in FH understand that genetic testing and mutation. However, no systemic screening treatment needs to be implemented in and treatment was initiated as no national childhood (Figure 3, patient experience). system was in place to manage this. There was no prospect of a national service In 2018, three members of the extended in the near future; however, a solution for whānau presented to the cardiology this whānau was needed urgently.

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Figure 2: Rural nurse experience.

I have been here for 35 years and was aware from the start that some research had been done by a cardiologist at the University Of Auckland School Of Medicine in the late 1970s. Therefore, as health providers we knew that it was likely a heredity gene (even though it was prior to the possibility of genetic mutation identification). We were constantly reminded of the impact of this mutation on the family by photos and in discussion about husbands, children, aunts and uncles who had su‘ ered a sudden and catastrophic cardiac event at an early age. We considered every Tangihanga to be a health system failure. Therefore, in primary care the families have always been a target for us, but we struggled with second- ary care response and with compliance with statins due to the high doses required and follow on side e‘ ects. We had found that atorvastatin worked better than simvastatin and then at one stage Pharmac took atorvastatin o‘ the subsidised list which was a frustration. As well most of the patient informa- tion focused on healthy food choices resulting in some erroneously believing that if they made dietary changes then medication would be unnecessary. It has also been di‘ icult when the family are no longer registered with us and their new GP does not understand the condition. One example was that I had a man in his 50s who had very high LDLs up until the age of 50 and would not take statins—he moved to Auckland and over the last five years has been compliant with medication. I wrote to his GP and asked if he would refer him to cardiology and explained why—his response was to send me a photo of his normal lipid profile—he did not under- stand that it was likely that 50 years of very high lipids had already caused significant damage—he did not refer—we are afraid of an unnecessary event at some stage as he ages. The identification of the genetic variant has instilled us with renewed confidence that we will be able to play a part in improving health outcomes for this family. The willingness of the secondary care provider to visit the Marae to provide education and develop a culturally appropriate plan of care has been very e‘ ective. We no longer feel that we are fighting the battle on our own. The health system taking a family centred approach has resulted in an e‘ ective referral and treatment pathway for this extended family that will certainly save lives.

broader consultation was with the national Methods genetic services, the paediatric metabolic Consultation with a broad range of department and the director of Māori Health invested stakeholders was undertaken Research at the Waitemata and Auckland to determine how to best ensure that the District Health Boards (DHB) Dr Helen whānau were empowered to manage this Wihongi. The discussion with Dr Wihongi condition across generations and geog- focused on how to ensure that tikanga Māori raphy. Initial consultation was with index (custom, ethics) was taken into account espe- whānau and then kaumātua (elders). Then cially around the issues regarding taking

Figure 3: Patient experience.

I have the genetic mutation and my 13-year-old son has very high cholesterol levels. My GP referred him to the hospital paediatric department for testing and surveillance. I had to take two days o‘ work specifically for an appointment because of the distance to the hospital. When we arrived the doctor told us she didn’t know why he was there because he has no existing heart disease. I proceeded to tell them about familial hypercholesterolemia and how we now know the specific mutation and its great news for our family. I explained that my son is on a statin, even though he is a young boy and our un- derstanding was that he needs to have his heart health and progress monitored very closely. I also said that he needed blood tests for the gene. The doctor looked at me dumbfounded and was embarrassed. She apologised, arranged a blood test and booked another appointment with another specialist. I had to take another two days o‘ work for the second appointment. This specialist told us everything we already knew, and sent us on our way with pamphlets. It felt like a waste of time.

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and storing of blood, as well as who owned whānau backtracked by asking questions. the data. We reviewed the current consent There was a strong feeling that decisions form used by the genetic services to ensure on how to manage this issue could not be this explained that blood samples may be made in haste, and that we were all in this stored and that this may have implications together (He waka eke noa (A canoe which for the whakapapa (genealogy). The form we are all in with no exception)). There was also explains that the samples are kept in agreement that for any solution to work, it New Zealand and are not given to third needed to be acceptable to everyone and parties. There is currently no national according to the Kaupapa Māori principles genetic database for FH in New Zealand so of self-determination, involvement of the no one currently holds the data other than whānau and āta (respectful relationships). the treating physician and laboratory. We Issues discussed were: also discussed how to balance the needs • Who should have access to the infor- of the extended whānau and the privacy mation and how to balance the rights of the individual. The genetic and meta- of the individual vs the rights of the bolic services provided support for cascade whānau screening and were happy to be part of the hui. The local general practice was also • How to cascade screen whānau and consulted to assess their needs and opinions ensure this is done in perpetuity on how best to move forward. • How to ensure whānau members Hui living in other counties access the information A hui (social gathering) was organised to inform the whānau about the genetic • How to ensure whānau is updated on mutation and discuss how best to manage new information regarding treatment this to ensure access to testing and treat- • How to access novel agents shown to ments. This was attended by the whānau, work in FH kaumātua, doctors and nurses from the • Can PHARMAC be approached for local health practice, the national genetic access for new medications for this services, a doctor from ADHB and a health whānau under Te Tiriti o Waitangi science student. obligations On arrival at the marae (meeting ground) • How to manage blood samples, ethical there was a pōwhiri (formal welcome), issues with privacy and storage of which included a karanga (call) to the blood manuhiri (guests), and a response. After a number of speeches and songs by the men, we all introduced ourselves. After a mihi Results (introduction) and waiata (song) the doctor A whānau member was nominated to run gave a talk that centred on what FH is, what a closed social media page for the whānau age to screen and treat FH, how the gene that includes a family tree. The closed is transmitted, how to organise testing and social media page can only be accessed by risks and benefi ts of treatment. The genet- members and Facebook administration. The icists then explained genetic and cascade Facebook administrators monitor closed testing and how it is undertaken. The formal sites only to “promote safety and security on presentations by the doctors and geneticists and off of our products”. Data is not given lasted two hours, and the rest of the hui was to third parties. The whānau member acts comprised of open discussions. There was as a gatekeeper so that new posts can be also a need to acknowledge the past. The sent to them and can only be uploaded by whānau felt used and let down by previous them. All extended whānau are invited to be doctors who had visited and taken samples part of this Facebook site, and the addition but gave no information on how to prevent of the genetic test result to the family tree further deaths. This had to be acknowledged is completely up the individual. A printable by the medical team. The pace of discus- letter to show health professionals was sions was driven primarily by the needs of created with general information about FH, the whānau. For example, when the doctor diagnosis and treatment, the proband iden- spoke too fast or used medical terms, the tifi ed and steps for genetic testing (Figure 4).

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Figure 4:

Your patient belongs to a family who carry a mutation on gene LDLR c.2312-3C>A. This causes a medical condition called ‘familial hypercholesterolaemia’ (FH). The key to preventing premature heart disease and death is early diagnosis and treatment to achieve normal life expectancy. Individuals of this whānau who have the mutation develop heart disease in their 20s and 30s. Life expectancy in untreated individuals is approximately 30–40 years for heterozygous individuals (HeFH). Homozygous individuals (HoFH) manifest cardiovascular diseases in childhood or adolescence. 1. What is familial hypercholesterolaemia? FH is an autosomal dominant disorder that leads to premature coronary heart disease and atherosclerosis. • Mutations result in markedly reduced hepatic capacity to clear atherogenic cholesterol-rich lipo- proteins (LDL) from the blood resulting in LDL cholesterol (LDL-C) accumulation in arteries from childhood (extreme cases have LDL-C exceeding 13mmol/L). • The sustained exposure of the arterial wall to elevated LDL-C levels accelerates cholesterol deposition and vascular inflammation leading to stroke, atherosclerosis and CHD. 2. Treatment—the key is early diagnosis and treatment • A healthy lifestyle (smoking cessation, high fruit/veg diet, exercise) • Genetic screening of children for the gene mutation should be done at ages 8–10 years (or diagnosis). There is a 20% chance that you will miss a gene mutation if you base your decision to do a genetic test based on cholesterol levels only. • Aim to reduce LDL by 50% or to <3.5mmol/L for children and <2.5mmol/L for healthy adults and <1.8mmol/L if someone already has heart disease or diabetes. If this cannot be achieved aim to reduce LDL-c by 50%. • Pregnancy/ breastfeeding—do not prescribe statins in pregnant/breast feeding woman—restart statins once able. • Medication dosage must be prescribed at the highest possible tolerated dose for that patient: - Statin (atorvastatin, rosuvastatin): 58–60% LDL decrease - Ezetimibe: 10–15% LDL decrease - PCSK-9 inhibitors: twice monthly injection decreases LDL by 50–60% - Bempodoic acid: 30–40% LDL decrease (currently unavailable in New Zealand) - Inclisiran: twice yearly—in clinical trials decreases LDL-c buy 54% 3. Blood testing for gene mutation There is a 50% chance of children of FH carriers inheriting the mutated genes. • All children of FH individuals should be genetically tested/cascade-based screening to identify LDLR mutation carriers. • Cascade-based screening is more e‘ ective and provides earlier diagnoses than lipid-profile testing which can give hard to interpret results and is based on cholesterol levels which fluctuate with age. 4. Steps for genetic testing 1. Fill out attached consent and lab form with blood sample. 2. Send to National Genetic Screening Services in Christchurch and email them in advance to raise this sample to their attention. 3. Begin treatment once mutation is confirmed. For more information contact Jocelyne Benatar on 021893886 or [email protected] Nga mihi, Jocelyne Benatar and the whānau

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A consent form for testing and a pre-fi lled clinicians to test and treat families from laboratory form with the proband are also other DHBs or refer them to a national available. The consent form is the standard screening service as none exists. In this consent form used by the National Genetic particular instance, testing was undertaken Services for New Zealand. It requires by clinicians from another DHB for research specifi c and separate consent for storage purposes, but there was no ability to refer of samples. As new treatments become for clinical follow up, cascade screening available, the ADHB doctor sends the infor- or appropriate treatment. A missed oppor- mation to the gatekeeper who then uploads tunity resulted to prevent premature this to keep extended whānau informed of cardiovascular events and led to an injustice latest treatments. The clinician has no access perpetrated on the whānau. This resulted to the Facebook page but is in close contact in inequity though three pathways; ongoing with the moderator to address concerns, exposure to a modifi able and potent risk misinformation and misconceptions about factor for CVD, difference in the quality FH and treatments to lower cholesterol. of care received and differential access to 12 This whānau social media page will also healthcare. Had the whānau lived within engage with whakahekenga (descendants) the researchers’ DHB, they would have been within the whānau in the long term. This appropriately managed. A priority of the will allow all to make informed decisions on hui was acknowledging that there had been the need to be tested, especially if no data is an injustice and that that this had led to available about their immediate whānau. ongoing harm. The whānau wanted assur- ances it would never happen to them again At present, the social media page is active and that measures were put in place to with a number of whānau members active ensure that the whānau had ownership and on it. As a direct result, genetic testing and control of their health information. appropriate treatment has been initiated in 17 whānau members. Intensive statin A second issue is that the system prioritises treatment has been initiated in two children the needs and privacy of the individual over and a couple of young adults; this has the the whānau. This Westernised approach to potential to ensure they reach normal life health ignores the cornerstone of health; taha 13 expectancy. The hope is that testing will be whānau (family health). In this instance, if extended to all young children when they one person misses testing, other members reach the age of eight. Only one surviving of the whānau further down the ‘cascade whānau member over the age of 50 has stream’, such as children will not be tested. been found to have the mutation; however, This may be useful in societies where the this LDL-c is lower than others with the needs of the individual are paramount, but mutation. not where the collective is just as important. Results of genetic tests are known only to Despite calls over a number of years for 14 the testing laboratory, the treating physician a national screening registry for FH, none and the person tested. Results of genetic has eventuated. The argument for a registry tests are only sent to the ADHB doctor if this is that it will allow for effi cient screening is specifi cally requested by the patient. No and treatment of gene positive children data is centrally held by genetic services and young adults to prevent future cardio- at this point as there is no national genetic vascular events. The argument against service for FH. This ensures data for and this is that it is a common genetic disorder about this Māori whānau can be safeguarded picked up by a cheap lipid test, and that and protected from parties who are not gene testing may be prohibitively expensive directly involved with their care. for the country. This approach ignores the benefi ts of cascade screening and treating gene positive children. It has resulted in a Discussion haphazard approach to FH with disparity The experience of this whānau under- in care across the country. For this whānau scores a number of issues. The fi rst is that it has led to ongoing hurt caused by young there is no systematic national approach family members developing often fatal to FH in New Zealand. It is not possible for premature heart disease.

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and views of the extended whānau. Estab- Conclusion lishing a partnership with the whānau and FH is the most common dominant giving back control of health information genetic disorder in humans and causes is crucial to ensure equity. A national premature heart disease and death. Current systematic programme is also needed to approaches in New Zealand are dependent manage this condition with important on index patients presenting for cascade health outcomes that can be averted if screening and do not incorporate the needs treated from a young age.

Competing interests: Nil. Acknowledgements: Denise Staple—Rural Practice Nurse. Nicola Reid and Dr Andrew Laurie—at Cardiovascular Prevention & Lipid Disorders, Canterbury District Health Board. Author information: Jocelyne Benatar, Auckland District Health Board, Auckland; Tara Evile, University of Auckland, Auckland; Helen Wihongi, Director of Māori Health Research, Waitemata and Auckland District Health Boards; The Whānau. Corresponding author: Dr Jocelyne Benatar, Auckland District Health Board, Auckland. [email protected] URL: www.nzma.org.nz/journal-articles/hui-a-partnership-in-practice-in-familial- hypercholesterolemia

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and treatment. Atheroscler 11. Liyanage KE, Burnett Journal of Epidemiology Suppl 2017; 26:25–35. JR, Hooper AJ, van 2001; 154:299–304. 10. Borissov B, Urbich M, Bockxmeer FM. Familial 13. Health Mo (2019) Wai Georgieva B, Tsenov S, Villa hypercholesterolemia: 2575 Māori Health Trends G. Cost-effectiveness of epidemiology, Neolithic Report. Wellington: evolocumab in treatment origins and modern Ministry of Health. geographic distribu- of heterozygous familial 14. Laurie AD, Scott RS, tion. Critical Reviews hypercholesterolaemia in George PM. Genetic in Clinical Laboratory Bulgaria: measuring health screening of patients with Sciences 2011; 48:1–18. benefi t by effectively treat- familial hypercholestero- ed patient-years*. Journal 12. Jones CP. Invited Commen- laemia (FH): a New Zealand of Market Access & Health tary: “Race,” Racism, perspective. Atheroscler Policy 2017; 5:1412753. and the Practice of Suppl 2004; 5:13–15. Epidemiology. American

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Lessons from a system- wide response to a measles outbreak, Canterbury, February–April 2019 Daniel Williams, Meik Dilcher, Hongfang Dong, Bridget Lester, Kerry Marshall, Ramon Pink, Debbie Smith, Jimmy Wong

ABSTRACT Despite New Zealand’s “measles elimination” status, the risk of measles outbreaks persists, due to ongoing measles importation and sub-optimal vaccination coverage, including specific sub-populations with higher proportions of susceptible people. From February to April 2019, Canterbury experienced a measles outbreak with 38 local cases and an unidentified index case. The outbreak strain was linked to a large outbreak in the Philippines. The whole-of-health-system response included active case and contact follow-up by public health and hospital sta‘ , and a prioritised vaccination campaign in primary care. Important features of a measles outbreak response in an “elimination” context include cross-system liaison, co-ordination of communications, careful prioritisation of use of available resources, and support for households a‘ ected by isolation and/or quarantine requests. Closer analysis of the e‘ ectiveness of outbreak control measures would help prioritise use of scarce public health and health care resources during outbreaks. Future measles outbreaks could be prevented by a systematic primary care-based MMR catch-up campaign.

easles is a highly contagious continue to be introduced to New Zealand airborne virus which affects both from overseas. Canterbury experienced Mchildren and adults and can be measles outbreaks in 2009 (126 confi rmed life-threatening. Furthermore, measles and 43 probable cases), 2011 (three cases), infection can cause immune memory loss, 2017 (one case) and 2018 (February, three increasing susceptibility to other infections cases; April, nine cases plus seven linked for up to three years and contributing sig- cases elsewhere in the South Island). There nifi cantly to childhood non-measles infec- are currently large measles outbreaks in tious disease mortality.1,2 In New Zealand, a number of overseas countries. From people born before 1969, when vaccination mid-2019 a large Auckland-centred outbreak was introduced, are likely to be immune grew rapidly and resulted in cases in many due to past measles infection. The measles, other parts of New Zealand and in neigh- mumps and rubella (MMR) vaccine is effec- bouring Pacifi c countries. tive at preventing measles in 95% of people The purpose of this paper is to help inform after one dose, and 96% of people after two measles control in New Zealand and else- 3 doses. Reports of previous New Zealand where by describing a contained measles outbreaks have identifi ed important gaps in outbreak in Canterbury in early 2019 4,5 community immunity. and refl ecting on lessons learnt from our New Zealand achieved measles elimi- system-wide response. nation in October 2017.6 However, cases

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Figure 1: Confi rmed measles cases by onset date and vaccination status, Canterbury, February–April 2019.

analysed for Measles IgM via a manual Methods ELISA using a WHO-recommended Siemens The Health Act 1956 requires health prac- Enzygnost kit. Measles IgG were detected titioners to notify confi rmed or suspected using a Euroimmun kit on an automated cases of measles to the medical offi cer of Triturus platform. health. Canterbury Community Health- Pathways7 provides a generic electronic Outbreak description notifi cation form or a measles-specifi c fax form, as well as advice on laboratory testing. In the last week of February 2019, CPH was Staff at Canterbury District Health Board notifi ed of fi ve unrelated confi rmed cases of (DHB)’s public health unit, Community and measles. One case had been an inpatient at Public Health (CPH) follow up notifi cations Christchurch Hospital before and during the using Ministry of Health case and contact incubation period. The other four cases were defi nitions and laboratory confi rmation from Rangiora, a town just north of Christ- criteria,8 and obtain further information church. Cases had been in contact with large from cases and contacts. numbers of people, including in schools and healthcare facilities. A further 33 confi rmed At the National Measles and Rubella Labo- cases were notifi ed during March (see ratory (CHL Christchurch), nucleic acids Figure 1), bringing the total number of cases were extracted from nasopharyngeal swab meeting our operational case defi nition to samples and analysed via a CDC-developed 38 (one additional case had been in Thailand screening real-time PCR.9 A second measles during their incubation and initial symp- genotype A-specifi c real-time PCR developed tomatic periods and so was not included in by the Regional Measles and Rubella the outbreak total). Sixteen cases were hospi- Laboratory at VIDRL/Melbourne was used talised and one case was admitted to ICU. to identify the measles vaccine strain in No cases died. Cases ranged in age from four people who had recently been vaccinated months to 54 years, with a median age of 23 and developed measles symptoms. Further years (see Table 1). Thirty-one cases (81.6%) genotyping of positive measles cases was were European, six (15.8%) were Māori, and done via a conventional RT-PCR targeting one (2.6%) was Asian. Although most lived in the N gene and sequencing of the terminal Christchurch, cases came from as far north 450 nucleotides. Serum samples were

Table 1: Age distribution of confi rmed measles cases of the February 2019 Canterbury outbreak.

Age group <15 months 15 months–4 years 5–28 years 29–50 years 50+ years N (%) 5 (13.2%) 2 (5.3%) 16 (42.1%) 13 (34.2%) 2 (5.3%)

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Figure 2: Distribution of confi rmed measles cases of the February 2019 Canterbury outbreak.

as Waiau (see Figure 2). Identifi ed exposure quently confi rmed as having a non-outbreak settings included households, education measles strain (D8). However, as he became settings (pre-school, primary and secondary symptomatic in Christchurch he met our school, and university), a hospital and two operational case defi nition and was followed medical centres (see Figure 3). However, half up as part of the outbreak. of the cases (19 cases) did not have any iden- Of the 38 cases of this outbreak, the geno- tifi ed exposure to measles. Nineteen cases types of 13 cases were determined at the (50%) were unimmunised, 11 (29%) had only National Measles and Rubella Laboratory received MMR1, four (10.5%) had received at Canterbury Health Labs (CHL) in Christ- MMR1 and MMR2, and four (10.5%) were of church and for eight cases genotyping was unknown vaccination status. One case was done at the Regional Measles and Rubella a general practitioner and six cases were Reference Lab at VIDRL, Melbourne. The hospital staff members. Two of the infected genotype of this outbreak (OB-19-108048-CH) healthcare workers had received MMR1 and was B3, but the strain of this outbreak was MMR2, two had received only MMR1 (both not previously reported in New Zealand. It vaccinated overseas), two were unvaccinated shows 100% sequence identity to a measles and one’s vaccination status was unknown. B3 sample from the Philippines from epide- One case was exported to Dunedin and miological week 17 in 2018 (MVs/San Juan subsequently infected one other person City.PHL/47.18/) and no exact matches there, and another case was exported to to MeaNS named strains. A phylogenetic Auckland. Both exported cases were linked comparison with genotyped measles samples to this outbreak with a 100% identical B3 from 2018 and 2019 also shows a close rela- sequence but have not been included in the tionship of the Canterbury B3 strain to other outbreak total as they did not meet our oper- B3 importations from the Philippines (see ational case defi nition. Case 11 was overseas phylogenetic tree in Figure 4). during his incubation period and was subse-

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Figure 3: Transmission between confi rmed measles cases in during February 2019 Canterbury outbreak.

During the period of the outbreak from away from early childhood services, school, 21 February (date of fi rst sample) until 31 work and close contact with unexposed March (date of last sample) the measles people for fi ve days after the appearance of vaccine strain (genotype A) was detected the rash, with airborne precautions recom- in 16 additional suspected cases from mended in healthcare facilities for the Canterbury. In the same time period, four same period. Susceptible contacts who met more importations of different B3 strains the contact defi nition were asked to avoid (from Afghanistan, Philippines, China [origi- attending school, early childhood services nally from the Philippines] and an unknown or community gatherings, and to avoid source) as well as two more D8 importations contact with other susceptible individuals, (from the UK and Thailand) have occurred including in higher-risk work settings, from in New Zealand (see Figure 4). seven days after fi rst exposure until 14 days after last exposure to the infectious case. Outbreak control However, contacts who had previously received one documented dose of MMR and Community and public health then received their second dose of MMR Initially all community cases and contacts within 72 hours after fi rst exposure and were followed up by CPH staff according to contacts who received IG within seven days in-house protocols. Cases were asked to stay after fi rst exposure were considered safe to

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Fi gure 4: Phylogenetic tree of genotyped measles samples 2018–April 2019.

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return to school or work. All contacts were as “high risk” (including cleaning staff advised to seek early medical attention employed by a contractor) were reviewed, (telephoning ahead) if symptoms developed. and if there was no record they were Institutions and families were provided contacted and offered vaccination. Over 130 information on the disease risk and advised staff were vaccinated by the Occupational that all unimmunised children should Health Service. receive MMR. The use of Health Act direc- Contacts from the emergency department tions to individuals, requiring exclusion, waiting room who had been discharged was considered, but was not required. home were followed up by CPH staff. Due to the large number of cases and Primary care contacts during the second week of the The Canterbury Primary Response Group outbreak CPH staff moved to “focused public (CPRG) is tasked by the Canterbury DHB with health management”, continuing to follow leading the region’s primary care emergency up household contacts but asking the case, planning, response and recovery. It includes institution or healthcare setting to provide general practice, nursing, pharmacy, and a tailored “contact letter” to other contacts. emergency planning expertise, and can call Full follow-up by CPH staff resumed later in on a wider group of health sector repre- the outbreak as case numbers fell. A total of sentatives to provide a whole-of-health 799 contacts were recorded as followed up response to health emergencies. CPRG by CPH staff. Many more contacts were iden- became involved when a measles vacci- tifi ed but not formally recorded. Seventeen nation campaign was proposed as part of the contacts were referred for MMR vaccination response, and contributed to the campaign’s within 72 hours of their exposure. planning and implementation, including A Coordinated Incident Management providing co-ordination and communication System (CIMS) structure ran from 22 with primary care. February until the outbreak was declared over on 16 May, and included up to 30 staff Planning and funding Canterbury DHB’s Planning and Funding from multiple CPH teams and other organ- division became involved as vaccine supply isations as the outbreak progressed. Daily issues arose due to increased demand, and situation reports and regularly updated led modelling of priority group volumes and incident action plans were shared with all expected demand and co-ordinated vaccine stakeholders. supply for the remainder of the outbreak. Christchurch Hospital The response to DHB patients and staff Vaccination campaign It was quickly clear that the early cases who had been exposed to measles at Christ- had exposed large numbers of people to church Hospital and/or who developed measles and that further spread was likely. measles was overseen by the Canterbury Canterbury has relatively high recent DHB Infection Prevention and Control Exec- measles, mumps and rubella vaccine (MMR) utive Committee. The committee included coverage, with 93% of both two and four infection control nurse specialists, infec- year-olds fully vaccinated for their age. tious disease physicians, laboratory and However, there was concern about those communications staff, and senior hospital in the community who were susceptible to management. Its focus remained on the measles because they: hospital, the key objectives being to contain measles infection and spread, and to • were too young for their fi rst MMR minimise impact on business as usual activ- (given at 15 months) ities. Over 200 staff who had been exposed • were too young for their second MMR to measles cases in hospital were followed (given at four years) up using CPH protocols. Staff members who • had declined or not sought MMR in had been exposed to measles but whose the past immune status was uncertain were offered • were aged between 29–50 years old serological testing to guide advice about and may have only had one MMR quarantine. In addition, vaccination records based on the vaccination schedule for all staff working in areas designated when they were young,

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• as well as concern about health or • all those aged 12 months to 28 years education professionals who worked • caregivers of infants aged up to 12 with vulnerable populations. months Initial public communications emphasised • those between 29 and 50 who work the importance of all people born after 1969 with children (teachers or healthcare having two MMR vaccinations. The resulting workers) public demand placed considerable pressure In total, over 31,000 vaccines were on general practices and on the vaccine distributed to general practice during the supply. An Immunisation Programme Team response, and over 22,000 vaccination was formed by representatives from CPH, events were recorded on the NIR. At its Ministry of Health, and Canterbury DHB peak, general practices vaccinated over Planning and Funding, who worked closely 1,950 people in one day, with individual with PHARMAC and the Canterbury Primary practices vaccinating up to 850 people each Response Group, and on 13 March identifi ed over the six weeks of the outbreak. Fifty- the following priorities for vaccination: three percent of vaccines were delivered Priority 1: Children aged 12 months to 13 to under-fi ve-year-olds. Two thirds of these years who have never been vaccinated were MMR2 delivered early to 1–3-year-olds. Priority 2: Children and adults aged 14 Five to 29-year-olds received 14% of years to 28 years who have never been vaccines. The remaining third of vaccines vaccinated were delivered to people aged 30 and over. Priority 3: Caregivers and close contacts Almost all of the vaccines delivered to of children aged less than 12 months or people aged fi ve and over were MMR1 (see those who cannot be vaccinated. Figure 5). The recorded ethnicity of those vaccinated was European 67%, MELAA 15%, Priority 4: Continue with the routine Maori 8%, Pacifi c 3% and Other 7%. immunisation programme (15 months and 4 years) Liaison Priority 5: Occupational groups who have A CPH medical offi cer of health undertook frequent contact with children, such as EEC, liaison with hospital, primary care primary, and secondary school teachers, and Ministry of Health groups, to help residential care and healthcare workers, coordinate activities and ensure good who have never been vaccinated. communication. Planning and Funding estimated vaccine CPH’s Māori Relationships Manager liaised requirements for each priority group (a with and provided information to local total of 20,000 vaccines for the fi ve priority rūnanga, Mana Whenua ki Waitaha, and groups), produced daily uptake reports local Māori providers. based on National Immunisation Register One of the Ministry of Health’s Deputy (NIR) data, and in conjunction with the Directors of Public Health was based at immunisation co-ordinators managed Community and Public Health for much vaccine supply to practices. The Immuni- of the outbreak, facilitating linkages to sation Programme Team met regularly, and the Communicable Diseases Team in the liaised with CPRG. Ministry as well as to PHARMAC, who were Bet ween 4 March and 24 March, 13,578 responsible for vaccine supply. MMR doses were recorded on NIR, with Communications greatest uptake in under-fi ve-year-olds. The Canterbury DHB Communications Another 4,500 MMR doses were adminis- Team were engaged early in the outbreak to tered to 14–50-year-olds but could not be ensure consistent and accurate information linked to NIR. As more vaccine had become was relayed through the DHB, other health available, the vaccination strategy was sector organisations and the community. reviewed, and a “phase two” four-week Media interest remained high for much of campaign agreed from 28 March to 26 April, the outbreak, often requiring daily media delaying the start of the seasonal infl uenza briefi ngs which were live-streamed via vaccination campaign, and targeting fi rst or Facebook, and interpreted by a sign language second MMR for: interpreter. The footage from daily media

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Figure 5: MMR administered in Canterbury 4 March–16 May 2019.

briefi ngs was posted on the Canterbury was also distributed to affected workplaces, DHB’s Facebook page, and elicited large community organisations and Christchurch volumes of comments, shares and likes. International Airport. Throughout the outbreak, the Commu- nications Team received a large number Discussion of private messages via Facebook from concerned members of the public requesting Source As the index case of this outbreak could not updates on the latest priority groups for be identifi ed, no information about impor- vaccinations, vaccine availability, whether tation was directly available. The measles it was safe for parents to take unvaccinated strain of this outbreak had been previously young children and babies out in public, and identifi ed in The Philippines but had not latest updates on case numbers. The medical been previously reported in New Zealand. offi cers of health fronted media briefi ngs and were consulted on any clinical queries The Philippines were experiencing a from members of the public. very large measles outbreak that started in December 2017, with mainly B3 genotypes The initial focus for communications was circulating.10 Canterbury’s Filipino population to advise the public on the risks and actions at the 2013 census was 4,887 (approximately they should take, and keep them updated as 1% of the then Canterbury population, the situation evolved. Communications staff 516,360). Between January and March 2019, were also involved with communications to 2,471 passengers arrived at Christchurch primary care and the wider health system, Airport carrying Philippine passports. and with liaison with the Ministry of Health. The cases with the earliest onset of Community information was provided symptoms and rash onset in this outbreak through print media, radio, television and were the fi rst Dunedin case, an 18-year-old, Canterbury DHB’s website and social media. and case 7, a 42-year-old from Christchurch, Press releases were produced daily during who both developed their fi rst symptoms the height of the outbreak and fact sheets on 14 February and a rash on 16 February. and FAQs were translated into multiple The Dunedin case was likely to have been languages (te reo Māori, Samoan, Farsi, infected while staying in Rangiora. Most Tongan, Tagalog, Hindi, Simplifi ed and other cases early in the outbreak appeared Traditional Chinese) and circulated through in Rangiora or had been inpatients at community channels. Christchurch hospital. On this basis, it was Education settings were identifi ed as hypothesised that the unknown index case priority audiences for communication and had visited Christchurch Hospital as well as information. Updated measles information moving around the community in Rangiora was distributed to all Canterbury early while infectious. childhood centres and schools. Information

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Ongoing risk of importation of the outbreak Canterbury DHB had been Globally, analyses of 2012 and 2013 data achieving MMR coverage of 92–95% at ages suggested that measles incidence is typically two and fi ve for the previous fi ve years, highest in less-developed nations.5 WHO so was confi dent that children aged 2–10 preliminary global data in August 2019 years were well protected. Unfortunately, showed that reported cases of measles rose vaccination coverage data for the years by 300 percent in the fi rst six months of before introduction of the NIR in 2005 are 2019, compared to the same period in 2018.11 incomplete. Bas ed on local experience, Many countries were in the midst of sizeable adults born between 1969 and 2005 were measles outbreaks, with all regions of the assumed to have mostly had one dose of world experiencing sustained rises in cases. measles vaccine (and some would have also received a second dose in their teenage Travel to New Zealand by non-New years). Coverage may have been lower for Zealanders is dominated by Australia, current secondary school-aged children, followed by China, UK, Japan and the US. whose vaccination ages coincided with Australia is also the most common travel public discussion of the now-discredited destination for New Zealanders.5 However, “Wakefi eld” paper. However, a substantial outbreaks in other countries with strong measles outbreak in Canterbury in 2009 had links to New Zealand or signifi cant immi- also raised awareness of measles, and wide- grant or resident populations here may pose spread publicity of the recommendation a particular risk. for early MMR1 and MMR2 for Canterbury Vaccination children may have increased vaccination Despite New Zealand’s immunisation uptake at that time. programme having achieved endemic Challenges for the vaccination campaign measles elimination in 2017, outbreaks included uncertainty about vaccine supplies, continue to occur in response to imported general practice capacity to deliver large cases. The World Health Organization numbers of additional vaccinations within estimates that interruption of measles trans- a short time frame, and diffi culty accessing mission can be achieved by herd immunity prior vaccination history for people vacci- when approximately 95% of the population nated before the introduction of the 11 is homogeneously immune to measles. In National Immunisation Register. Unfortu- New Zealand, not only is overall population nately, adults who would otherwise have immunity lower than 95%, but signifi cant been eligible for a second MMR who sought pockets of susceptible, non-immune popu- vaccination during the outbreak had to lation remain. As a result, New Zealand be turned away if they did not belong to a outbreaks still largely affect school-aged priority group. children, young adults and children under Over one third of the vaccinations admin- two years of age.5 Modelling suggests that istered during the outbreak were MMR2 supplementary measles immunisation delivered early (to 1–3-year-olds). While would be economically benefi cial in the New these vaccinations improved protection for Zealand population.12 an important vulnerable group during the Heightened media and public interest in outbreak, they will not improve population measles during this outbreak provided a immunity in the longer term. The number potential opportunity to promote vaccination of people in Canterbury born since 1969 widely, in order to improve community who have not received full vaccination immunity, and reduce measles spread during against measles is unknown. Many of the current and future outbreaks. However, these people are not aware that they have the limited amount of vaccine available at not been fully immunised. A systematic short notice necessitated identifi cation of campaign offering vaccination to all these priority groups for vaccination. people through recall and/or or opportu- Canterbury DHB Planning and Funding nistic vaccination in general practice could led the vaccine prioritisation process, substantially reduce the future risk of working with CPH, Ministry of Health, measles outbreaks in Canterbury. PHARMAC and primary care. At the start

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Isolation and quarantine representative body of the local tribe Ngāi Isolation of measles cases while infectious Tahu in Canterbury for health issues) and is universally recommended. Recommen- local providers. dations for quarantining of susceptible The potential for isolation and exclusion contacts vary between jurisdictions, but advice to place a disproportionate burden on while there is limited evidence for its effec- poorer families was noted, and plans were tiveness, there are good arguments for its made to engage social support for house- use in elimination settings, particularly in holds requiring it. However, the extent to the very early stages of an outbreak.13 which households were willing or able to Although the Health Act (1956) provides comply with isolation and exclusion advice is for medical offi cers of health to require not known, as the response team had limited compliance with isolation or quarantine capacity to follow up individual households restrictions by issuing a direction or by once advice had been provided, and the applying for a public health order, in team did not become aware of any house- practice these provisions are time-consuming holds where social support was required. and diffi cult to enforce. The use of directions More recent Canterbury measles cases was discussed by the response team in this have highlighted the importance of isolation outbreak, but was not considered necessary. and exclusion advice that matches the Cases and contacts generally appeared expectations and needs of the households receptive to public health advice, and and families involved, and CPH is pursuing appeared willing to comply with isolation closer working relationships with Māori and and quarantine requests. Pacifi c health and social service providers to Nevertheless, the burden on individuals ensure that public health advice is accom- and families of staying away from work panied by appropriate support. or study, or keeping children away from Prioritising public health resources school or early education for extended Public health follow-up of measles cases is quarantine periods can be substantial. CPH labour-intensive, and capacity for individual is continuing to develop relationships with contact follow-up by public health staff is other agencies which can provide support to quickly overwhelmed in a large outbreak. In households affected by isolation or quar- this outbreak, planning for “focused public antine advice, including primary healthcare health management” commenced early, providers and non-government organisa- based on strategies developed and gener- tions in our region. ously shared by Auckland Regional Public Equity, hauora Māori, and Health Service. The “focused management” culturally and linguistically diverse phase recognises that household contacts are at highest risk, and they continue to groups be followed up by public health staff. For Current “fully vaccinated’ rates for Māori other contacts, public health staff provide a in Canterbury are 91% for two-year-olds and tailored letter to the case, and to any insti- 89% for fi ve-year-olds, and for Pacifi c people tution or health care setting where exposure in Canterbury are 97% for two-year-olds and has occurred, with a request for the letter 98% for fi ve-year-olds (CDHB 2018/19 Q4 to be passed on to any identifi ed contacts. data). The ethnicity of measles cases in this The effectiveness of this approach compared outbreak was recorded and did not suggest to individual contact follow-up by public a disproportionate burden in any one ethnic health staff is unknown. group. Although the outbreak measles strain suggested the current Philippines Follow-up of waiting-room contacts is measles outbreak as the most likely source labour-intensive for healthcare settings, and of this outbreak, no cases were identifi ed in can be at least partially avoided by clearly Filipino people. instructing possible measles patients to phone ahead for advice. No specifi c cultural or support needs were identifi ed for the six Māori cases. The In this outbreak only 17 contacts were response team maintained links with and advised to receive post-exposure MMR provided advice to local rūnanga (tribal within 72 hours of their contact with a councils), Mana Whenua ki Waitaha (the measles case. Post-exposure prophylaxis

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is a proven control measure in measles Impact of mosque murders 14,15 outbreaks. However, measles cases are The 15 March Christchurch mosque commonly notifi ed too late for post-ex- murders occurred in the middle of this posure MMR to be effective. Encouraging outbreak. Potential implications for the health practitioners to notify measles cases outbreak considered by the response team on suspicion is an important component of included reduced capacity at Christchurch outbreak communications. Hospital, the potential for re-importation of Recent research16 has suggested that measles by people travelling to New Zealand “breakthrough” measles infections in in response to the event, and the potential vaccinated patients produce a lower viral for measles spread at mass gatherings and load, and are associated with a reduced risk among the communities affected by and of onward transmission. In this outbreak responding to the event. Public commu- 11 of 38 cases had previously received nications in the aftermath of the event MMR1 and four of 38 cases had previously emphasised that anyone who was unwell received both MMR1 and MMR2. None should stay away from others, and particu- of the seven instances of identifi ed trans- larly from mass gatherings or community mission from one case to another in this events. Media coverage of the outbreak, outbreak resulted from fully vaccinated which had been intense, decreased cases. Further discussion of the extent of markedly following the event. In retrospect, follow-up required for breakthrough cases no effect of the event on measles trans- could support prioritisation of limited public mission could be detected. health resources in large measles outbreaks. Healthcare workers Lessons learnt Exposure of healthcare workers to Despite New Zealand’s “measles elimi- measles is inevitable in any outbreak. nation” status, measles continues to pose In this outbreak there was substantial a risk to New Zealanders due to ongoing measles transmission in the hospital envi- importation and sub-optimal immunisation ronment. Nosocomial transmission of coverage, including specifi c sub-popula- measles by healthcare workers is costly and tions with higher proportions of susceptible preventable,17 as is quarantine of susceptible people. This outbreak, which involved healthcare staff after workplace exposure substantial spread before it was detected, to measles. All staff in healthcare settings and in which the index case was never should have their vaccination history identifi ed, highlighted that risk, which recorded, and susceptible staff should be the subsequent much larger 2019 Auck- offered measles vaccination. land-centred outbreak has reinforced. Communications Canterbury mounted a substantial whole- A substantial measles outbreak response of-health-system response to the outbreak, is a complex event involving many players, and along with apparently relatively high with inevitable public and media interest. background population measles immunity, In the early stages of this outbreak varia- this appears to have limited its size. tions in messaging, particularly concerning Important features of a measles outbreak priority groups for vaccination, provided response in an “elimination” context challenges for the public and for primary include cross-system liaison, co-ordination care staff delivering MMR. Early collabo- of communications, careful prioritisation ration between public health, primary care, of use of available resources, and support the Ministry of Health and PHARMAC on for households affected by isolation and/or vaccination strategy development is recom- quarantine requests. mended to avoid confusion. Alignment of In view of the ongoing risk of measles key messages across all agencies is essential, outbreaks, review and prioritisation of strat- and can be facilitated by early establishment egies for measles prevention and control is of regular interagency meetings, early important at both national and local levels. development and adoption of a formal Maintaining high childhood vaccination communications plan, and by including an rates, vaccination of healthcare workers, and on-the-spot communications advisor in the immunisation advice for travellers to coun- public health response team. tries with outbreaks are obvious strategies to

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continue. Closer analysis of the effectiveness Future measles outbreaks could be of outbreak control measures would help prevented by a systematic primary care- prioritise use of scarce public health and based MMR catch-up campaign. healthcare resources during outbreaks.

Competing interests: Nil. Acknowledgements: We acknowledge with gratitude the many staff from across our health system and people from across our community whose efforts helped control this outbreak. Author information: Daniel Williams, Public Health Physician, Community and Public Health, Canterbury District Health Board, Christchurch; Meik Dilcher, Scientifi c Offi cer, National Measles and Rubella Laboratory, Canterbury Health Laboratories, Christchurch; Hongfang Dong, Public Health Analyst, Community and Public Health, Canterbury District Health Board, Christchurch; Bridget Lester, Child, Youth and Family Portfolio Manager, Planning and Funding, Canterbury District Health Board, Christchurch; Kerry Marshall, Communities and Communicable Diseases Team Manager, Community and Public Health, Canterbury District Health Board, Christchurch; Ramon Pink, Medical Offi cer of Health and Clinical Director, Community and Public Health, Canterbury District Health Board, Christchurch; Debbie Smith, Health Protection Offi cer, Community and Public Health, Canterbury District Health Board, Christchurch; Jimmy Wong, Health Protection Offi cer, Community and Public Health, Canterbury District Health Board, Christchurch. Corresponding author: Daniel Williams, Public Health Physician, Community and Public Health, Canterbury District Health Board, PO Box 1475, Christchurch. [email protected] URL: www.nzma.org.nz/journal-articles/lessons-from-a-system-wide-response-to-a-measles- outbreak-canterbury-february-april-2019

REFERENCES: 1. Mina MJ, et al. Long-term 4. Reynolds G, et al. Analysis measles-and-rubella-offi - measles-induced immu- of the Auckland 2014 cially-eliminated-new-zea- nomodulation increases measles outbreak indicates land overall childhood infec- that adolescents and young 7. Canterbury District Health tious disease mortality. adults could benefi t from Board. Canterbury Commu- Science. 2015; 348:694–9. catch-up vaccination. N Z nity Health Pathways. 2. Mina MJ, et al. Measles Med J. 2015; 128:53–62. Available from: https:// virus infection diminishes 5. Hayman DTS, et al. Global canterbury.communit- preexisting antibodies importation and population yhealthpathways.org/ that offer protection from risk factors for measles in 8. Ministry of Health. Commu- other pathogens. Science. New Zealand: a case study nicable Disease Control 2019; 366:599–606. for highly immunized Manual. 2019, Ministry 3. Pietrantonj D, et al. populations. Epidemiol of Health: Wellington. Infect. 2017; 145:1875–1885. Vaccines for measles, 9. Hummel KB, et al. Devel- mumps, rubella, and 6. Ministry of Health. opment of quantitative varicella in children. Measles and rubella gene-specifi c real-time Cochrane Database of offi cially eliminated RT-PCR assays for the detec- Systematic Reviews 2020, in New Zealand. 2017; tion of measles virus in Issue 4. Art. No.: CD004407. Available from: http://www. clinical specimens. J Virol DOI: 10.1002/14651858. health.govt.nz/news-me- Methods. 2006; 132:166–73. CD004407.pub4 dia/media-releases/

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10. World Health Organi- of New Zealand. Vaccine. laxis for measles contacts sation Western Pacifi c 2017; 35:4913–4922. in NSW. N S W Public Region. Measles-Rubella 13. Gastanaduy PA, et al. Health Bull. 2009; 20:81–5. Bulletin. 2019: Manila. Public health responses 16. Sundell N, et al. Measles 11. World Health Organisation. during measles outbreaks outbreak in Gothenburg New measles surveillance in elimination settings: urban area, Sweden, 2017 data from WHO. 2019; Strategies and challenges. to 2018: low viral load in Available from: http://www. Hum Vaccin Immunother. breakthrough infections. who.int/immunization/ 2018; 14:2222–2238. Euro Surveill. 2019; 24(17). newsroom/new-mea- 14. Barrabeig I, et al. Effective- 17. Baxi R, et al. Outbreak sles-data-august-2019/ ness of measles vaccination report: nosocomial en/ for control of exposed transmission of measles 12. Hayman DTS, et al. children. Pediatr Infect through an unvaccinated Cost-benefi t analyses of Dis J. 2011; 30:78–80. healthcare worker-im- supplementary measles 15. Sheppeard V, et al. The plications for public immunisation in the highly effectiveness of prophy- health. J Public Health immunized population (Oxf). 2014; 36:375–81.

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Medication dispensing for attention-deficit/ hyperactivity disorder to New Zealand youth Stephanie D’Souza, Nicholas Bowden, Sheree Gibb, Nichola Shackleton, Richard Audas, Sarah Hetrick, Barry Taylor, Barry Milne

ABSTRACT AIMS: Global trends show an increase in medication dispensing for attention-deficit/hyperactivity disorder (ADHD) in young people over time. The current study aimed to examine whether similar trends were observed in New Zealand youth over the period of 2007/08 to 2016/17. METHODS: We estimated the prevalence in ADHD medication dispensing using national pharmaceutical data for each fiscal year from 2007/08 to 2016/17 in approximately 2.4 million New Zealand youth aged 1–24 years. We also examined whether trends varied by sociodemographic factors. RESULTS: The total dispensing prevalence almost doubled from 516 per 100,000 to 996 per 100,000 over the study period. Males had a consistently higher dispensing prevalence relative to females. Young people aged 7–17 years had the highest dispensing prevalence. The most deprived quintile had a slightly lower dispensing prevalence relative to other quintiles. Ethnic di‘ erences in dispensing prevalence were apparent, with deprivation di‘ erences also existing within most ethnic groups. CONCLUSIONS: Overall, our study showed an increase in ADHD medication use by young people in New Zealand, similar to international findings. Further research is needed into why disparities in dispensing prevalence occur across ethnic and socioeconomic groups.

ttention-defi cit/hyperactivity disorder as hyperkinetic disorder).6,7 In contrast, (ADHD) is a childhood-onset neurode- other regions (including New Zealand) use velopmental disorder characterised the Diagnostic and Statistical Manual of A th by symptoms of hyperactivity/impulsivity the American Psychiatric Association (5 and inattention.1 It is more common in edition; DSM-V).1 males than females, with symptoms decreas- Treatment for ADHD consists of a combi- 2,3 ing with age. The disorder is associated nation of talk therapy and behavioural with adverse health, academic and social interventions for child and parent, lifestyle outcomes and an increased risk of comor- changes and medication.8 For preschool bidity with oppositional defi ant disorder, children, behavioural intervention is 3 conduct disorder and substance abuse. recommended as the fi rst line of treatment, ADHD has an estimated worldwide prev- with medication given only when inter- alence of 3.4%.4,5 Varying diagnosis rates vention alone is unsuccessful in improving across countries and regions may refl ect symptoms.3,9,10 For older children and adults, different diagnostic criteria rather than it is recommended that a combined approach actual differences in disorder prevalence.5 is used (ie, medication and behavioural For example, European countries generally intervention/therapy).11,12 Internationally, show lower prevalence than other regions, medications for ADHD include stimulants, as the more stringent International Clas- such as methylphenidate and amphetamines, sifi cation of Diseases (10th edition; ICD-10) and non-stimulants, such as atomoxetine, is used for diagnosing ADHD (referred to clonidine and guanfacine.8,11 In New Zealand,

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methylphenidate hydrochloride, dexamphet- 2. Higher prevalence of dispensing amine sulphate, atomoxetine and modafi nil among males than females, given the are publicly funded for clinical use as stim- higher ADHD prevalence in males.2,3 ulants (for stimulant medication) and in the 3. Lower dispensing prevalence for 13 treatment of ADHD. young children (1–6 years) and young International studies using administrative adults (18–24 years) relative to middle databases have shown that the prevalence childhood and adolescence (7–17 of ADHD medication prescription and years), given that ADHD symptoms dispensing is increasing. Bachmann et al reduce with age and medication of examined the trends in ADHD medication preschool children is discouraged.9 prescription in children aged 0 to 19 years 4. Lowest dispensing prevalence in the across fi ve regions (Denmark, Germany, the highest socioeconomic deprivation Netherlands, the UK and the US) between quintile. This is based on observed 6 2005 to 2012. They found that while prev- socioeconomic disparities in the alence in ADHD medication varied across dispensing of other medications in regions, it increased across all areas ranging New Zealand.16 For example, Bowden from 10.7% in the US to 302.7% in Denmark. et al found that antidepressant Raman et al also observed similar trends dispensing to young people was lower across Asia, Australia, North America, and in deprived areas, despite depression Northern and Western Europe between 2001 prevalence being similar.16,17 They 14 to 2015. Given that there is no evidence of speculated that this could be due to an increase in disorder prevalence, the rise access barriers. in ADHD medication use has led to concern 5. Higher dispensing rates for New about medication over-prescription.5 Zealand Europeans, with lower rates To date, one study by Barczyk et al has for other ethnic groups. New Zealand examined dispensing prevalence and trends Health Survey (NZHS) results indi- for ADHD medication, alongside other cating highest ADHD prevalence in 15 psychotropic medication, in New Zealand. European/Other and Māori children Using national administrative records on and lowest in Pasifi ka and Asian pharmaceutical dispensing, the study found children.16 However, studies of youth that the prevalence of ADHD medication antidepressant prescribing have indi- increased from 0.75% in 2011 to 1.06% cated that the European/Other ethnic in 2016 (an increase of 41.33%) in 0- to group has a higher antidepressant 17-year-olds. The authors also observed that dispensing prevalence than Māori, the dispensing prevalence for all psycho- despite having similar depressive tropic medication was much lower for disorder rates.16,17 Barczyk et al also Māori. However, the study did not calculate reported a lower psychotropic medi- the dispensing prevalence for other demo- cation dispensing prevalence for graphic groups (other than ethnicity and Māori.15 sex) nor the group-specifi c dispensing trends 6. Different socioeconomic patterns in over time. dispensing prevalence for different This study aimed to investigate the prev- ethnic groups, indicating socio- alence and trends in ADHD medication economic barriers to accessing dispensing in young New Zealanders, medication for some ethnic groups. similar to Barczyk et al.15 However, we extended the observation period from 1 July 2007 to 30 June 2017, focused on individuals Methods aged 1 to 24 years, and examined preva- Study population lence and trends by sex, age, ethnicity and Data for this study were obtained from area-level deprivation. We hypothesised that Statistics New Zealand’s Integrated Data there will be: Infrastructure (IDI), a large database of de-identifi ed administrative and survey data 1. Increasing dispensing prevalence over about people and households linked at the time, consistent with trends observed individual level. A detailed description of in other studies.6,14,15 the IDI can be found elsewhere.18

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Table 1: Population counts per fi scal year and stratifi ed by age bands and sex.

Fiscal year Total 1–6yrs 7–12yrs 13–17yrs 18–24yrs Male Female population 2007/2008 1,441,674 348,471 356,280 317,352 419,568 738,837 702,834

2008/2009 1,455,660 356,754 354,468 313,989 430,449 746,367 709,290

2009/2010 1,468,593 363,885 353,088 311,220 440,400 754,248 714,345

2010/2011 1,473,105 367,950 350,829 307,953 446,379 757,107 715,998

2011/2012 1,468,284 369,765 348,477 303,342 446,700 754,725 713,559

2012/2013 1,466,064 369,945 346,275 301,296 448,551 754,209 711,855

2013/2014 1,475,529 370,479 349,962 300,906 454,182 759,831 715,695

2014/2015 1,489,050 368,178 358,218 300,288 462,366 769,122 719,928

2015/2016 1,501,488 366,984 367,329 300,501 466,674 776,106 725,382

2016/2017 1,509,429 363,873 376,521 303,123 465,912 779,124 730,305

The study population consisted of Sociodemographic information repeated cross-sections of all New Zealand Age was calculated at the end of each residents aged between 1 to 24 years, taken fi scal year (ie, 30 June) and categorised into for each fi scal year between 1 July 2007 to the following four bands: 1–6, 7–12, 13–17 30 June 2017 (see Table 1 for population and 18–24 years. counts). The combined study population Ethnicity was measured in total response across all fi scal years was 2,395,209 indi- format; that is, individuals could belong to viduals. This time-period represents when one or more ethnic groups, as it is common reliable data are available for this study. The for children in New Zealand to identify resident population is identifi ed based on with multiple ethnicities.21 We focused on activity in health, tax, education, and injury six ethnic groups, using Level 1 Statistics claims datasets and falls within 2% of offi cial New Zealand categorisation: European; resident population estimates.19,20 Māori; Pasifi ka; Asian; Middle Eastern, Latin ADHD medication dispensing American and African (MELAA); Other.21 Information on ADHD medication The NZDep2013 Index was used to capture dispensing was obtained by linking data area-level deprivation. The NZDep2013 from the Ministry of Health community Index assigns each meshblock a deprivation pharmaceutical dispensing collection to decile value from 1 (least deprived) to 10 the study population. The pharmaceu- (most deprived), based on socioeconomic tical collection contains information about indicators from the 2013 New Zealand subsidised prescription drugs dispensed by census.22 Meshblocks are evenly distributed community pharmacists. across each deprivation level. For the For each fi scal year, individuals were current study, deprivation scores were classifi ed as obtaining a dispensing if they converted into quintiles. received at least one dispensing of a publicly Table 1 presents the count of individuals funded stimulant/ADHD medication: in the study population within each fi scal atomoxetine, dexamphetamine sulphate, year, by age and sex. Table 2 presents the methylphenidate hydrochloride (immediate- count of individuals in the study population 13 and extended-release), and modafi nil. In by fi scal year, stratifi ed by total response addition, clonidine, typically prescribed ethnicity and area-level deprivation. for hypertension in adults, is used off-label to treat ADHD in the New Zealand paedi- Data analysis atric population and was therefore also Dispensing prevalence rates were calcu- included.12 lated for each fi scal year by dividing the

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Table 2: Counts per fi scal year, stratifi ed by total response ethnicity and NZDep2013 quintiles.

Fiscal year Asian European Māori MELAA Pasifika Other Quintile 1 Quintile 2 Quintile 3 Quintile 4 Quintile 5

2007/2008 162,066 995,313 352,434 41,871 175,023 18,792 240,330 256,377 270,855 300,312 362,412

2008/2009 168,396 1,000,572 355,344 41,235 179,586 19,125 244,422 258,978 272,619 301,302 365,928

2009/2010 174,126 1,005,000 360,567 39,912 184,116 19,122 247,446 261,285 274,662 302,073 369,528

2010/2011 180,789 1,002,462 362,451 37,431 186,936 19,131 250,500 262,971 275,373 302,484 371,994

2011/2012 187,242 995,394 361,230 34,011 187,791 19,143 251,169 262,467 273,732 299,436 369,726

2012/2013 193,932 992,325 360,276 31,791 187,452 19,071 253,692 264,156 274,167 298,086 367,359

2013/2014 201,543 992,001 363,132 32,802 189,690 19,062 256,524 266,679 275,967 299,037 368,928

2014/2015 214,425 991,083 366,120 33,450 192,222 18,771 258,078 267,939 276,990 298,785 370,134

2015/2016 227,187 988,932 369,168 33,654 194,730 18,459 259,749 270,336 279,258 298,734 375,627

2016/2017 234,885 986,130 371,514 33,921 196,782 18,210 263,304 272,250 280,287 297,000 376,377

number of young people dispensed an ADHD medication within that year by the number Results of resident New Zealand youth in that year, The period prevalence for ADHD medi- and presented as ‘per 100,000 population’. cation dispensing between 2007/08 and These counts were random rounded to base 2016/17 was 1.18%. The dispensing prev- 3 to reduce disclosure risk, as per the confi - alence almost doubled from 2007/08 to dentiality rules of Statistics New Zealand. 2016/17, increasing from 516 per 100,000 to This method was used to calculate the 996 per 100,000 (Table 3). The dispensing dispensing prevalence for the total popu- prevalence for both males and females lation, by sex, age, ethnicity, and deprivation increased over time, with the prevalence for quintiles and for each ADHD medication males being consistently 3–4 times higher type. All data management and analyses than females (Table 3). However, the rate were conducted using SAS version 7.1. of increase was far greater for females

Table 3: Annual dispensing prevalence (per 100,000 population) overall and by sex.

Fiscal year Overall Male Female 2007/08 516 802 216

2008/09 566 878 237

2009/10 617 952 265

2010/11 652 1,003 282

2011/12 708 1,081 313

2012/13 780 1,176 362

2013/14 826 1,241 385

2014/15 876 1,302 420

2015/16 928 1,378 446

2016/17 996 1,472 488

% Change 93.0 83.5 126.6

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Figure 1: ADHD dispensing prevalence from 2007/08 to 2016/17, broken down by age group (Panel A), ethnicity (Panel B), and 2013 NZ Deprivation Index quintiles (Panel C).

(127%) than for males (84%) from 2007/08 Figure 1B stratifi es dispensing prevalence to 2016/17. As indicated in Figure 1A, by ethnicity. The European and Other ethnic 7–17-year-olds had the highest dispensing groups generally had the highest dispensing prevalence over the entire study period, prevalence across fi scal years. The Asian followed by 18–24-year-olds and then ethnic group had the lowest dispensing 1–6-year-olds. Rates increased over time for prevalence, with the Pasifi ka ethnic group all age groups, with the greatest increase second lowest. All groups showed an for 18–24-year-olds (152%) and lowest for increase in dispensing prevalence over 7–12-year-olds (84%). time. Rate increases were greatest for Asian

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Figure 2: ADHD dispensing prevalence by 2013 NZ Deprivation Index quintiles within each ethnic group.

(190%) and Pasifi ka (144%) followed by for Pasifi ka and from 2013/14 for the Asian Other (132%), Māori (105%), then European population (Figures 2E and 2A, respec- (99%). The MELAA group had the lowest rate tively). The most deprived quintile generally increase over the study period (39%). had the lowest dispensing prevalence for Dispensing prevalence increased over Māori and Pasifi ka (Figures 2C and 2E, time for all NZDep quintiles (see Figure respectively). For the MELAA group, there 1C). Quintile 5 generally had the lowest appeared to be a separation in dispensing dispensing prevalence, although differences prevalence between quintiles from 2014/15 in dispensing prevalence between quin- (Figure 2D); The least deprived quintile had tiles were small. Increases over time were the highest dispensing prevalence, followed greater in less deprived quintiles. Quintiles 1 by quintiles 2 and 3, and the most deprived and 2 approximately doubled in dispensing quintiles (quintiles 4 and 5) had the lowest prevalence (126% and 101%, respectively). dispensing prevalence. For the Other ethnic Quintiles 3 and 4 had the next highest rate group, quintiles 4 and 5 had had a slightly increase (both at 88%), with Quintile 5 higher dispensing prevalence relative to showing the lowest rate increase (83%). other quintiles (Figure 2F). We also examined whether the dispensing Table 4 shows the dispensing prevalence prevalence trends for NZDep quintiles for each ADHD medication type. The prev- differed across ethnic groups. For the alence for methylphenidate hydrochloride, European group, dispensing prevalence was atomoxetine and clonidine increased from greater with increasing deprivation (Figure 2007/08 to 2016/17, whereas the rates of 2B). The least deprived quintile had the dexamphetamine sulphate and modafi nil highest dispensing prevalence from 2009/10 remained consistent over time. Methylphe- nidate hydrochloride had a much higher

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Table 4: Annual dispensing prevalence (per 100,000 population) for each medication type.

Fiscal Methylphenidate Clonidine Dexamphetamine Atomoxetine Modafinil year hydrochloride sulphate 2007/08 462 50 36 <1 <1

2008/09 507 51 33 12 <1

2009/10 555 50 28 28 <1

2010/11 586 52 26 28 <1

2011/12 638 57 28 31 01

2012/13 703 66 29 35 01

2013/14 744 70 30 37 01

2014/15 790 79 32 39 01

2015/16 834 89 31 42 01

2016/17 899 98 34 46 01

dispensing prevalence than the other medi- as a prescription drug for ADHD in 2009.23 cations, with a rate 9–11 times greater than Similar to other countries, methylphenidate the next most prescribed drug (clonidine). hydrochloride was the most commonly Modafi nil was the least prevalent drug, prescribed medication within our study with prevalence ranging from <1–1 per and considerably more prevalent than 100,000. Dispensing prevalence for Atomox- other ADHD medications.3,6,14 This is unsur- etine increased quickly between 2007/08 to prising as it is recommended as the fi rst-line 2016/17, though prevalence was still low. medication for treating ADHD.8 Modafi nil was the least prevalent medication, likely Discussion due to a lack of recommendation for its use in children and adolescents with ADHD. Using administrative data on community International guidelines typically state that pharmaceutical dispensing, we investigated methylphenidate, amphetamines, atom- the dispensing trends of ADHD medication oxetine, clonidine or guanfacine could to New Zealanders aged 1–24 years. Between be prescribed for the pharmacological 1 July 2007 and 30 June 2017, the prevalence treatment of ADHD in children.8,11 of ADHD medication dispensing to young people increased by 93%. These results are As noted previously, there is no evidence consistent with our hypothesis and fi ndings of an increase in the prevalence of ADHD 5 in New Zealand, although the increase in diagnoses. Polanczyk et al reported that, prevalence was greater than that observed throughout 1985 to 2012, ADHD prevalence by Barczyk et al (41.33%).15 This difference did not vary over time; rather, variability in prevalence rate increase is likely due to a in ADHD prevalence could be explained variety of factors including the different age by methodological differences between 5 ranges and study periods. studies. Therefore, the increase in ADHD medication prevalence over time is likely Our results also support the fi ndings not due to an increase in the prevalence of by Bachmann et al and Raman et al, who ADHD. While our study cannot elucidate observed that ADHD medication use was what may be underlying the increase in increasing over time across different medication prevalence, potential explana- regions worldwide.6,14 Specifi cally, meth- tions could be increased access to healthcare ylphenidate hydrochloride, clonidine and and medication, greater awareness, and atomoxetine all increased in prevalence changes to clinical practice.24 It is important over the study period. The rapid increase in to note that the dispensing prevalence at prevalence for atomoxetine from 2007/08 the end of our study period (1% in 2016/17) to 2016/17 is likely due to its subsidisation

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remained below the pooled worldwide Our results did not support our depriva- prevalence of the disorder (3.4%), indicating tion-specifi c hypothesis (ie, that dispensing that the medication is probably not over-dis- prevalence would increase with deprivation pensed. However, this does not mean that level, except for the most deprived quintile medicating every child with a diagnosis of which would show the lowest prevalence ADHD should therefore be encouraged. The rates over time). While the most deprived choice to medicate should depend on what quintile generally had the lowest dispensing is best for the child and family preferences, prevalence for ADHD medication, this with particular consideration given to the disparity was small. Furthermore, there benefi ts of going on medication against the were no clear differences in dispensing potential risks associated with medication prevalence between quintiles 1–3. However, side effects.11 more deprived areas showed a smaller Consistent with our hypothesis, we found relative increase in dispensing prevalence. a higher dispensing prevalence in males This suggests that there may be differ- than females. This mirrors the sex difference ences in access to medication over time for in ADHD prevalence, which has a male to different socioeconomic groups, with more female ratio of 3–4:1.3 However, the relative deprived areas having less access. increase in dispensing prevalence over time Consistent with our hypothesis, the was much greater for females than males. European and Other ethnic groups showed ADHD has historically been harder to detect the highest dispensing prevalence while in females than males, as females tend to Pasifi ka and Asian groups showed the show primarily inattentive symptoms rather lowest prevalence (though the greatest than more disruptive hyperactivity and relative increase in dispensing prevalence). impulsivity symptoms. The greater relative These disparities are similar, but do not increase in dispensing prevalence for exactly mirror ethnic differences in ADHD females may refl ect increased recognition of diagnosis. In the NZHS, the prevalence of ADHD in this group.25 Nevertheless, the rate parent-reported doctor-diagnosed ADHD still remains consistently higher for males was found to be highest in European/Other relative to females. and lowest in Pasifi ka and Asian children.16 We observed the highest prevalence in However, the diagnosis prevalence for ADHD medication dispensing in 7–12 and Māori children (2.4%) was similar to the 13–17-year-olds, followed by a notably lower diagnosis prevalence for European/Other prevalence in 18–24-year-olds. The lowest (2.7%). This fi nding was not replicated in dispensing prevalence was for very young our study, where the dispensing prevalence children (1–6-year-olds). These fi ndings for Māori children is lower than European also support our age-specifi c hypothesis. As or Other. Barczyk et al similarly observed noted previously, pharmacological treat- lower dispensing prevalence among Māori 15 ments are not encouraged in pre-school for all psychotropic medication. children unless symptoms are severe, This difference in relative disorder preva- likely explaining the very low prevalence lence and relative dispensing prevalence for observed in this age band.9 The lower prev- Māori may be due to barriers in accessing alence for 18–24-year-olds could be due medication. Our results did indicate that for to the reduction in the severity of ADHD Māori, those in the most deprived quintile symptoms.3 It may also be due to caution generally had the lowest dispensing preva- on the part of the prescriber over concerns lence, suggesting that fi nancial barriers to regarding stimulant misuse and abuse. access may play a role. However, cultural International guidelines do recommend choices regarding treatment may also that healthcare professionals monitor underly the lower dispensing prevalence. adolescents and adults receiving ADHD Indeed, whānau or community-based medication for signs of stimulant abuse.11 models of treatment are dominant in Māori However, the 18–24-year-old age group also culture and may be preferred over pharma- had the greatest relative increase in ADHD cological interventions.26,27 dispensing prevalence (152%). One expla- For the European and Other ethnic nation for this could be improved detection groups, greater dispensing prevalence of ADHD in adults. was observed for more deprived quintiles

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(though these differences were small). In consistently higher than that of both dexa- contrast, the least deprived quintile within mphetamine sulphate and atomoxetine Asian, MELAA and Pasifi ka groups had the combined. This suggests that it may be bene- highest dispensing prevalence by the end fi cial to subsidise clonidine for the treatment of the study period. These differences were of ADHD in New Zealand. small for the Asian and MELAA group but In addition, a review of the most recent particularly pronounced for Pasifi ka. Addi- ADHD assessment and treatment guidelines tionally, those in the most deprived quintile is needed in New Zealand. Guidelines were generally had the lowest dispensing prev- last published by the New Zealand Ministry alence among Pasifi ka. While we did fi nd of Health in 2001 and do not mention all that both Pasifi ka and Asian groups showed currently publicly funded medications in the greatest relative increase in dispensing New Zealand (eg, atomoxetine), let alone prevalence over time, these results suggest internationally approved and recommended that this increase may be driven by those ADHD medications such as clonidine and from low deprivation areas. Overall, these guanfacine.11,12 These guidelines also align results imply that there may be a barrier with outdated diagnostic criteria from the to accessing healthcare for certain groups, DSM-IV rather than the current DSM-V. Any particularly Pasifi ka who come from more updated New Zealand guidelines should deprived regions. As such, these groups may also consider the ethnic and socioeconomic need targeted support in the management disparities apparent in ADHD medication of ADHD. use, and take these into account in their It is important to note that as we allow recommendations so that equitable health for the identifi cation of multiple ethnic- outcomes can be achieved. ities, caution is advised when comparing A limitation of this study is the absence one group to another. However, multi- of information on why the medication ethnic identifi cation represents the reality was dispensed. In some cases ADHD of many New Zealand children. Given that medication can be prescribed for narco- we are not running inferential statistics but lepsy, or hypertension.13 Therefore, not describing general trends, we do not believe all children dispensed a medication may that this impacts the fi delity of our results. have a diagnosis of ADHD. However, given Caution is also advised when interpreting that narcolepsy and hypertension are rare fi ndings relating to the MELAA, Asian and in children, we believe that non-ADHD Other groups, given their ethnic and cultural prescribing will be rare in our sample.28 heterogeneity. Additionally, it is worth While our results suggest that over-dis- noting the considerable increase in Asian pensing is likely not of concern in New youth across the study period (Table 1), Zealand, we cannot conclude whether likely due to increased immigration. It may New Zealand prescribing practices for be of interest to investigate whether immi- ADHD medication are appropriate without gration status infl uences medication use complementary information on non-phar- for this group, particularly for psychotropic macological treatments. Furthermore, the medication. IDI only provides information on medication Our selection of medications for this study dispensings (ie, fi lled prescriptions), which was primarily based on what is publicly may not refl ect the total number of prescrip- funded for ADHD treatment in New Zealand tions given. However, despite these data (ie, methylphenidate hydrochloride, dexa- limitations, the availability of a national mphetamine sulfate, atomoxetine and dataset on pharmaceuticals that is linkable modafi nil).13 However, we are also aware to sociodemographic data is an important that clonidine is internationally recom- strength. As a result, we were able to mended for ADHD treatment and appears estimate the dispensing prevalence of ADHD to be used “off-label” for ADHD in New medication for all New Zealand children Zealand.11 This is supported by our results, and young people as well as subgroups. which show a doubling of the clonidine The availability of data over 10 years also dispensing rate from 2007/08 to 2016/17. allowed us to examine temporal trends in Furthermore, its dispensing prevalence is dispensing prevalence.

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This study demonstrates that the fi ndings are not Offi cial Statistics. The dispensing of ADHD medication to children opinions, fi ndings, recommendations, and and young people is increasing over time conclusions expressed are those of the in New Zealand but remains lower than researchers, not Statistics NZ. the worldwide pooled prevalence of the Access to the anonymised data used in this disorder. There is evidence of differences study was provided by Statistics NZ under in dispensing prevalence across ethnic and the security and confi dentiality provisions of socioeconomic groups, suggesting dispar- the Statistics Act 1975. Only people autho- ities in ADHD medication use. To ensure that rised by the Statistics Act 1975 are allowed equitable health outcomes are achieved, to see data about a particular person, investigating the reasons underlying these household, business, or organisation, and disparities is important. Further research the results in this paper have been confi - that incorporates diagnostic and treatment dentialised to protect these groups from information would also help determine identifi cation and to keep their data safe. whether current prescription practices are Careful consideration has been given to appropriate. the privacy, security and confi dentiality Statistics New Zealand Disclaimer issues associated with using adminis- Access to the data presented was managed trative and survey data in the IDI. Further by Statistics New Zealand under strict detail can be found in the Privacy impact micro-data access protocols and in accor- assessment for the Integrated Data Infra- dance with the security and confi dentiality structure available from www.stats.govt.nz. provisions of the Statistic Act 1975. Our

Competing interests: Dr Gibb, Dr Hetrick and Dr Bowden report grants from University of Auckland via National Science Challenge MBIE grant outside the submitted work. Dr Taylor reports grants from NZ Ministry of Business and Enterprise, from null, during the conduct of the study. Dr Gibb and Dr Bowden report grants from Janssen Cilag Pty Ltd outside the submitted work. Acknowledgements: We would like to thank Statistics New Zealand for access to the Integrated Data Infrastructure data and to the Statistics New Zealand Data Lab staff for their thorough checking of our resul- ts. We would also like to acknowledge the Public Policy Institute at the University of Auckland for access to their Data Lab. Author information: Stephanie D’Souza, A Better Start National Science Challenge; Centre of Methods and Policy Application in the Social Sciences, Auckland; Nicholas Bowden, A Better Start National Science Challenge; Department of Women’s and Children’s Health, University of Otago, Dunedin; Sheree Gibb, A Better Start National Science Challenge; Department of Public Health, University of Otago, Wellington; Nichola Shackleton, A Better Start National Science Challenge; Centre of Methods and Policy Application in the Social Sciences, Auckland; Richard Audas, A Better Start National Science Challenge; Department of Women’s and Chil- dren’s Health, University of Otago, Dunedin; Division of Community Health and Humanities, Faculty of Medicine, Memorial University of Newfoundland, Canada; Sarah Hetrick, A Better Start National Science Challenge; Department of Psychological Medicine, University of Auckland, Auckland; Barry Taylor, A Better Start National Science Challenge; Department of Women’s and Children’s Health, University of Otago, Dunedin; Barry Milne, A Better Start National Science Challenge; Centre of Methods and Policy Appli- cation in the Social Sciences, Auckland. Corresponding author: Dr Stephanie D’Souza, COMPASS Research Centre, The University of Auckland, Private Bag 92019, Auckland 1142. [email protected] URL: www.nzma.org.nz/journal-articles/medication-dispensing-for-attention-defi cit-hyperactivity- disorder-to-new-zealand-youth

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REFERENCES: 1. American Psychiatric essential facts: ADHD: population-based data- Association. Diagnostic an updated review of bases. Lancet Psychiatry. and statistical manual of the essential facts. Child 2018 Oct; 5(10):824–35. mental disorders (DSM-5®). Care Health Dev. 2014 15. Barczyk ZA, Rucklidge JJ, Washington: American Nov; 40(6):762–74. Eggleston M, Mulder RT. Psychiatric Association 9. National Guideline Centre Psychotropic Medication Publishing; 2013. 1520 p. (UK). Attention defi cit Prescription Rates and 2. Faraone SV, Biederman J, hyperactivity disorder: Trends for New Zealand Mick E. The age-dependent diagnosis and management Children and Adolescents decline of attention defi cit (NG87) [Internet]. London: 2008–2016. J Child Adolesc hyperactivity disorder: a National Institute for Psychopharmacol. 2019 meta-analysis of follow- Health and Care Excellence Oct 18;cap.2019.0032. up studies. Psychol Med. (UK); 2019 [cited 2020 Jun 16. Ministry of Health. Annual 2006 Feb; 36(2):159–65. 6]. (National Institute for Data Explorer 2016/17: New 3. Thapar A, Cooper M. Health and Care Excel- Zealand Health Survey Attention defi cit hyper- lence: Clinical Guidelines). [Data File]. [Internet]. activity disorder. The Available from: www.nice. 2017 [cited 2019 Aug 21]. Lancet. 2016 Mar 19; org.uk/guidance/ng87 Available from: http:// 387(10024):1240–50. 10. Halperin JM, Marks DJ. minhealthnz.shinyapps. 4. Polanczyk GV, Salum GA, Practitioner Review: io/nz-health-survey- Sugaya LS, Caye A, Rohde Assessment and treatment 2016-17-annual-data- LA. Annual Research of preschool children explorer/_w_de89654c/#!/ Review: A meta-analysis of with attention-defi cit/ explore-indicators the worldwide prevalence hyperactivity disorder. J 17. Bowden N, Gibb S, Thab- of mental disorders in Child Psychol Psychiatry. rew H, Audas R, Camp children and adolescents. 2019; 60(9):930–43. J, Taylor B, et al. IDI J Child Psychol Psychiatry. 11. Wolraich ML, Hagan JF, trends in antidepressant 2015; 56(3):345–365. Allan C, Chan E, Davison dispensing to New Zealand 5. Polanczyk GV, Willcutt EG, D, Earls M, et al. Clinical children and young people Salum GA, Kieling C, Rohde practice guideline for the between 2007/08 and LA. ADHD prevalence esti- diagnosis, evaluation, 2015/16. N Z Med J. 2019 mates across three decades: and treatment of atten- Nov 8; 132(1505):48–61. an updated systematic tion-defi cit/hyperactivity 18. Milne BJ, Atkinson J, review and meta-regression disorder in children and Blakely T, Day H, Douwes analysis. Int J Epidemiol. adolescents. Pediatrics. J, Gibb S, et al. Data 2014 Apr; 43(2):434–42. 2019 Oct; 144(4):e20192528. Resource Profi le: The New 6. Bachmann CJ, Wijlaars LP, 12. Ministry of Health. New Zealand Integrated Data Kalverdijk LJ, Burcu M, Zealand guidelines for the Infrastructure (IDI). Int J Glaeske G, Schuiling-Ven- assessment and treat- Epidemiol. 2019 Feb 21; inga CCM, et al. Trends ment of attention-defi cit/ 19. Gibb S, Bycroft C, Mathe- in ADHD medication use hyperactivity disorder. son-Dunning N. Identifying in children and adoles- Wellington, N.Z.: Minis- the New Zealand resident cents in fi ve western try of Health; 2001. population in the Inte- countries, 2005–2012. Eur 13. PHARMAC. New Zealand grated Data Infrastructure Neuropsychopharmacol. pharmaceutical schedule (IDI) [Internet]. Wellington, 2017 May; 27(5):484–93. [Internet]. PHARMAC; New Zealand: Statistics 7. World Health Organi- 2020 [cited 2020 Jun 9]. New Zealand; 2016 [cited zation. International Available from: http:// 2019 May 17]. Available statistical classifi cation www.pharmac.govt. from: http://www.stats. of diseases and related nz/2020/06/01/Schedule.pdf govt.nz/~/media/Statistics/ health problems. - 10th 14. Raman SR, Man KKC, surveys-and-methods/ revision, edition 2010. Bahmanyar S, Berard methods/research-papers/ Geneva: World Health A, Bilder S, Boukhris T, topss/identifying-nz-res- Organization; 2011. et al. Trends in atten- ident-pop-in-idi/ identifying-nz-resi- 8. Tarver J, Daley D, Sayal K. tion-defi cit hyperactivity dent-population-in-idi.pdf Attention-defi cit hyper- disorder medication use: activity disorder (ADHD): a retrospective obser- 20. Zhao J, Gibb S, Jackson an updated review of the vational study using R, Mehta S, Exeter DJ.

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Constructing whole of sion [Internet]. 2008 [cited 26. Metcalfe S, Laking G, population cohorts for 2019 Dec 11]. Available Arnold J. Variation in health and social research from: http://www.pharmac. the use of medicines by using the New Zealand govt.nz/2008/10/02/2008- ethnicity during 2006/07 Integrated Data Infrastruc- 10-02%20PHARMAC%20 in New Zealand: a prelim- ture. Aust N Z J Public Notifi cation%20of%20 inary analysis. N Z Med J Health. 2018; 42(4):382–8. Strattera%20and%20 Online. 2013; 126(1384):28. 21. Statistics New Zealand. Humalog%20Mix%20 27. Norris P, Horsburgh S, Understanding and funding%20decision.pdf Lovelock K, Becket G, working with ethnicity 24. Steinhausen H-C. Recent Keown S, Arroll B, et data: a technical paper. international trends in al. Medicalisation or Wellington: Statistics psychotropic medication under-treatment? Psycho- New Zealand; 2005. prescriptions for children tropic medication use by 22. Atkinson J, Salmond C, and adolescents. Eur Child elderly people in New Crampton P. NZDep2013 Adolesc Psychiatry. 2015 Zealand. Health Sociol Rev. index of deprivation. Jun 1; 24(6):635–40. 2011 Jun 1; 20(2):202–18. Dunedin: University 25. Nussbaum NL. ADHD and 28. Kotagal S. Narcolepsy of Otago; 2014. female specifi c concerns: in children. Semin 23. PHARMAC. PHARMAC Noti- A review of the literature Pediatr Neurol. 1996 fi cation of Strattera and and clinical implications. Mar 1; 3(1):36–43. Humalog Mix funding deci- J Atten Disord. 2012 Feb 1; 16(2):87–100.

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Knowledge and perspectives about the use of cannabis as a medicine: a mixed methods observational study in a cohort of New Zealand general practice patients Karen Oldfield, Allie Eathorne, Ingrid Maijers, Richard Beasley, Alex Semprini, Irene Braithwaite

ABSTRACT AIM: To determine what patients presenting to general practice (GP) understand about the use of cannabis as a medicine, beliefs of how this may impact their medical conditions and interactions with doctors. METHOD: An in-person survey of 134 GP patients from four GP practices throughout the North Island of New Zealand undertaken from November 2018 to October 2019. RESULTS: Fi¤ y-five percent of the sample were female, with 40% of all participants aged 60 years plus. Ninety-one percent of participants indicated they would use a prescribed medicinal cannabis product while 45% reported they believed it may be of some benefit to their medical condition. Of those who believed it beneficial, 71% indicated they thought it useful for pain relief. Participants indicated comfort discussing medicinal cannabis use with GPs and specialists (92% respectively); however, less than 10% had done this. CONCLUSIONS: Just under half of patients surveyed believe that medicinal cannabis products may be helpful to their condition, and while the majority report willingness, few have discussed this with their GP or specialist. There is need for accessible, accurate information regarding the use of cannabis-based medicine for patients and doctors alike to guide the patient-doctor consultation and decrease barriers to open discussion.

n December 2018 the New Zealand gov- This recent legislative change refl ects a ernment introduced the Misuse of Drugs growing worldwide trend towards the use I(Medicinal Cannabis) Amendment Act,1 of cannabis as a medicine, a trend which allowing patients with a palliative diagno- tends to outstrip the available supporting sis a statutory defence against the use of evidence. This results in a misalignment illicit cannabis in the management of their between public expectations and the symptoms. It also legislated the development medical/scientifi c regulatory bodies that are of a medical cannabis scheme that would charged with developing guidelines and/ enhance access to quality medicinal canna- or following regulations. For example in bis products. This regulatory scheme came November 2018 a change in government into effect in April 2020 and allows general legislation allowed the prescription practitioners (GP) to prescribe approved me- of medicinal cannabis products in the dicinal cannabis products without the need UK;2 however, the recommendations to for specialist approval. prescribers from the National Institute for

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Health Care and Excellence (NICE) guideline In this study we asked patients visiting [NG144] for Cannabis-based medicinal their GP about their current understanding products3 recommended the use of only regarding the use of cannabis as a medicine. three pharmaceutical-grade products for The primary outcome was patient beliefs specifi c medical conditions and ran counter about the potential impact that medicinal to the public expectations of the legislation, cannabis may have on their medical which they expected would allow the wider conditions. Secondary outcomes included; use of cannabinoid -based products for proportions of participants that had under- medicinal purposes.2,4 taken discussions with a GP or specialist In a study of GPs in New Zealand, 77% had about medicinal cannabis products; if they reservations about prescribing medicinal had used medicinal or illicit cannabis for a cannabis products, citing insuffi cient medical condition in the past; what infor- evidence of safety and effi cacy and lack of mation patients wanted from their GP about understanding of the prescribing process.5 medicinal cannabis and how they wished However, the majority stated they would this to be communicated. We hypothesised be likely to prescribe such products that that patients would have expectations of had been manufactured in accordance with medicinal cannabis that exceed current good manufacturing practice (GMP) and scientifi c evidence, with limited knowledge shown effi cacy through a similar process to about the specifi c pharmaceutical medicinal all other approved medicines.5 This outlook cannabis products available. We anticipated is consistent with studies from Ireland,6 that a small proportion of patients would Australia7 and the US8 demonstrating that have discussed medicinal cannabis with healthcare professionals are somewhat their GP or specialists. cautious in their approach to the use of medicinal cannabis products while they sit Methods outside the usual evidence-based approach A mixed methods prospective observa- 9 to the development of medicines. tional study design was used. The general population appears more Recruitment was through four GP prac- supportive of the medical applications of tices located within the North Island of New cannabis. In the UK, a 1998–2002 survey Zealand (Wellington, Hutt Valley, Wair- indicated that a third of patients with arapa and Bay of Plenty) occurring between chronic illness had used cannabis for November 2018 and October 2019. GP prac- medicinal purposes, with 68% reporting tices were included if they were part of the 10 effi cacy. In New Zealand, the majority Medical Research Institute of New Zealand of medicinal cannabis users surveyed in GP Research Network, and the GPs them- 2019 reported an overwhelming belief in selves had participated in a related study of 11 symptom improvement. Despite 63.5% healthcare practitioners’ knowledge of the discussing their use with their doctor, only use of cannabis as a medicine.5 14% had requested a prescription, primarily Approval for the research was obtained due to lack of faith in doctors prescribing, from the Victoria University of Wellington bureaucracy and cost.11 A recent study of Human Ethics Committee (Reference: current cannabis users in the US showed #25835). disparity between beliefs in the effectiveness of cannabis as a medicine and the available Participants evidence; and that those who sought and Participants were eligible for inclusion received information from their primary if they attended the GP practice for an care provider about medicinal cannabis appointment on a day when the study had better knowledge of effectiveness.12 The investigator was present in the practice drivers for patient expectations and will- and were 18 years or older. If the primary ingness to use cannabis as a medicine may appointment holder was a child less than relate to the high mainstream and social 18 then their parents or guardian were not media profi le of cannabis,12 distrust in the eligible. Patients were not required to have a pharmaceutical industry13 and the growing specifi c diagnosis to participate in the study. wellness culture associated with products that are perceived as natural.

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Recruitment Data entry and analysis Eligible patients were asked by the All data was entered into REDCap practice reception staff or attending GP if (Research Electronic Data Capture).17 they were interested in completing a ques- Partially completed questionnaires were tionnaire and those expressing interest included for analysis. Single missing data were given a participant information (PIS) points such as a blank space in a table sheet to read. Patients were then referred where all other information had been input to the on-site study investigator who fully were treated as a ‘Don’t know’ answer and discussed the study and answered any ques- contributed to the denominator. All other tions. Participants were given the option blank fi elds were treated as ‘No answer to complete the questionnaire via iPad or given’ and were removed from the analysis paper. The study-investigator was available for that question. Free-text answers were to clarify any questions during survey grouped into related categories in NVivo14 completion. Implied consent was obtained to be reported numerically, with supporting by the submission of the questionnaire to quotes used in the results as required. the study investigator. Ethnicity data was prioritised to level two Questionnaire according to the Health Information Stan- dards Organisation.15 The questionnaire was developed with the assistance of a patient advocate Statistics and contained the following domains Descriptive statistics were used to (Appendix): calculate percentages with exact 95% • Patient demographics confi dence intervals (CI) reported where appropriate. Percentages and CIs were • Beliefs around the use of medicinal calculated using Microsoft Excel and SAS® cannabis in relation to their medical software, Version 9.4 Copyright © 2013. The conditions proportion denominator was determined by • Patient knowledge of pharmaceu- the number of participants answering that tical grade medicinal cannabis specifi c question within the questionnaire. products, particularly Sativex® (the The sample size represents a convenience only approved pharmaceutical grade sample, accounting for the central limit medicinal cannabis product in New theorem that proposes that in sample sizes Zealand), including cost per year and greater than 30 the distribution of the availability in New Zealand sample population mean will refl ect that of • Willingness to take a prescribed the normal population.16 medicinal cannabis product • Interactions with their GP and/or Results specialists about the use of medicinal Across the four practices, 360 potential cannabis participants were approached by recep- • Previous use of recreational/illicit tionists to read the participant information cannabis to treat medical symptoms; sheet relating to the survey, of which 160 perceived effectiveness of this accepted (44.4%). Of these, 134 participants treatment undertook the questionnaire (83.8%) with • Information they would seek from a an overall response rate for the survey of healthcare professional about the use 37.2%. Participant demographics are shown of medicinal cannabis and preferred in Table 1. The median age-band was 50-–59 method of delivery of this information years and the age-band distribution may be seen in Figure 1. For the purposes of the study, medicinal cannabis was defi ned as “any use of The most common reasons for GP atten- cannabis plants and/or medications derived dance were hypertension (n=27), health from cannabis that have been used by a check-ups (n=17), depression (n=15), anxiety patient to treat a medical condition”. (n=15) and musculoskeletal problems (n=11). The most commonly reported classes of Questions allowed a mixture of Yes/No, patient medications were anti-hypertensives Multiple choice and Free-text answers. (n=45), anti-depressants and anti-anxiety

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Table 1: Patient demographics.

n % Gender Male 60 44.8

Female 74 55.2

Age <20 2 1.5

20–29 11 8.2

30–39 23 17.2

40–49 17 12.7

50–59 28 20.9

60–69 24 17.9

70–79 21 15.7

80+ 8 6.0

Ethnicity (prioritised to level 2)15 NZ European 106 79.1

Māori 5 3.7

Pacific 3 2.2

Chinese 1 0.8

Indian 2 1.5

Other 17 12.7

Figure 1: Age-band distribution of participants.

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Table 2: Beliefs about medicinal cannabis products.

n % 95% CI Would you take a prescribed medicinal cannabis product? Yes 121/133 91.0 84.8–95.3

Do you believe a medicinal cannabis product would be helpful for your condition? Yes 59/131 45.0 36.3–54.0

No 72/131 55.0 46.0–63.7

If Yes, why? (more than one answer can be supplied) Symptom controla 14/59 23.7 13.6–36.6

Pain relief 42/59 71.2 57.9–82.2

Decrease anxiety 28/59 47.5 34.3–60.9

Cure my condition 5/59 8.5 2.8–18.7

Other reasonsb 5/59 8.5 2.8–18.7

a: Nausea n=4, Fatigue n=2, Appetite n=1, Blood pressure n=1, Calmed state of mind n=1, Chemotherapy associated side e‘ ects n=1, Confusion n=1, Joint inflammation n=1, Muscle relaxant n=1, Sleep related disorders n=1, Spasticity n=1, Vomiting n=1. b: Sleep related problems: n=3, Don’t know n=2, General support of management n=1, Nausea n=1, Nutritional support n=1. medications (n=22), non-steroidal anti-in- Patient knowledge of medicinal fl ammatories (NSAIDs) (n=19), cholesterol cannabis products lowering agents (n=14) and proton pump Overall, 43 participants (32.3%) stated inhibitors (n=10). Seven participants were awareness of at least one prescription taking opioid medications. medicinal cannabis product, though the Patient beliefs about medicinal majority of those were not aware of specifi c cannabis prescriptions pharmaceutical-grade products (Table 3). Patient beliefs about medicinal cannabis Of 38 participants who answered about products are shown in Table 2. When asked specifi c products, eight were aware of if they would take a prescribed medicinal Sativex®; with one participant aware it was cannabis product, 91.0% (95% CI: 84.8 combination of tetrahydrocannabinol and to 95.3) reported ‘Yes’. Most participants cannabidiol, fi ve believing it to be a canna- (71.2%) who thought their condition may bidiol only product and two not supplying be helped believed it may be useful for pain answers. Five participants estimated the relief. Those participants who believed they annual cost to patients of Sativex®, with would NOT benefi t from medicinal cannabis responses ranging from $1,600 to $1,000,000. products could be grouped into fi ve cate- Interactions with healthcare gories: not relevant to current condition professionals (n=26), belief that cannabis is useful for Participants indicated they would be pain only (n=18), not knowing if it would happy to discuss medicinal cannabis help (n=15), satisfaction with current medi- products with the healthcare professionals cation regime or not currently taking any involved in their care; GP (91.7% (95% medications (n=6), and belief that the mode CI: 85.7–95.8)), specialist (92.1% (95% CI: of consumption, eg, smoking, would exac- 83.6–97.0)), however less than 10% reported erbate other problems (n=2). doing this (Table 4).

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Table 3: Knowledge of inmedicinal cannabis products.

n % 95% CI Total participants indicating awareness of 43/133 32.3 24.5–41.0 prescribed products

Recognition of named products in those who indicated they were aware of prescribed products Nabiximols (Sativex®) 8/38 21.1 9.6–37.3

Dronabinol (Marinol) 8/38 21.1 9.6–37.3

Nabilone (Cesamet) 3/38 7.9 1.7–21.4

Epidiolex® 4/38 10.5 2.9–24.8

Table 4: Interactions with healthcare professionals about medicinal cannabis.

GP Specialist

n % 95% CI n % 95%CI Happy to discuss with healthcare provider? Yes 122/133 91.7 85.7–95.8 70/76 92.1 83.6–97.0

Don’t have a specialist --- 57/133 42.9 34.3–51.7

If Yes, have you discussed 6/122 4.9 1.8–10.4 6/70 8.6 3.2–17.7 medicinal cannabis products?

Did you feel informed? 2/6 33.3 4.3–77.7 3/5 60.0 14.7–94.7

Were you prescribed a product? 1/6 16.7 0.4–64.1 - - -

If not happy to discuss, why not? Stigma --- 1/6 16.7 0.4–64.1

Legal implications 5/11 45.5 16.8–76.6 2/6 33.3 4.3–77.7

Cost 2/11 18.2 2.3–51.8 - - -

Othera 5/11 45.5 16.8–76.6 3/6 50.0 11.8–88.2

a: GP: Dislike any type of drug n=2, Not aware of how it would help me n=1, Not interested n=1, No answer n=1 Specialist: No need n=1, Satisfied with condition currently n=1, No answer n=1.

Table 5: Use of recreational/illicit cannabis for medical symptoms.

N % 95%CI Use of recreational/illicit cannabis to treat medical symptoms 15/134 11.2 6.4–17.8

Mode of consumption Smoking (pure) 12/15 80.0 51.9–95.7

Smoking (with tobacco) 2/15 13.3 1.7–40.5

Vaped 2/15 13.3 1.7–40.5

Oil 5/15 33.3 11.8–61.6

Edibles 1/15 6.7 0.2–32.0

Other 1/15 6.7 0.2–32.0

Did you find it e ective? Yes 13/15 86.7 59.5–98.3

Did you reduce your prescribed medications? Yes 8/12 66.7 34.9–90.1

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Use of recreational/illicit cannabis The majority of participants wished for medical symptoms to access information about medicinal cannabis from their provider through a Recreational/illicit cannabis had been used website (68.7% (95 % CI: 60.1–76.4)) or a for symptom relief of medical conditions pamphlet (45.5% (95% CI: 36.9–54.4)). by 15 (11.2%) participants, of whom the majority (80.0%) smoked cannabis (Table 5). Thirteen (86.7%) found it to be effective for Discussion their symptoms, with eight indicating they In this study over 90% of patients had reduced other regular medications. The would use medicinal cannabis products primary symptoms that participants reported if prescribed by their GP or specialist and using recreational cannabis for were pain a similar proportion would be happy to (n=8), insomnia (n=5) and anxiety (n=4). discuss medicinal cannabis products with Information communication from their practitioners. Most (70%) thought it would be best used for pain, and just under healthcare professionals half thought it might be helpful for their Participants wanted a wide range of infor- specifi c condition. Despite this, awareness mation about medicinal cannabis from their of approved medicinal cannabis products healthcare professionals, with 82.8% (95%CI: was low and less than 10% of patients had 75.4–88.8) indicating that they would like actually approached their doctor about further information. Emergent themes were medicinal cannabis. Those who did not benefi ts and side effects, effi cacy in specifi c want to discuss with their practitioners conditions and how that compared with were concerned about legal implications other medications, dosage and adminis- and reported a dislike of ‘drugs’ in general. tration—including long-term use, addiction A small number of patients reported using information and impact on functioning, recreational/illicit cannabis to treat medical work and driving. Supporting quotes from symptoms, primarily through smoking, with participants are shown in Figure 2.

Figure 2: What do patients want to know about the use of medicinal cannabis?

“If the product could potentially be useful for a condition I had I would like to know about it and the options I had and generally as much information about it as possible.” Female, age 20–29

“What medications there are and how well users respond to them compared with other medication options?” Female, age 30–39

“Risks/dangers/side e‘ ects of taking medical cannabis. What conditions etc the drug would be most suitable for etc?” Male, age 20–29

“Benefits of cannabis for me with my condition—side e‘ ects, reactions, negatives—long-term usage issues and guarantee of supply—costs and supply issues (legal; otherwise).” Male, age 60–69

“What it can help with? I am only aware of people needing to use it when they are extremely sick.” Female, age 30–39

“Pro and cons, can you become addicted? Statistics of helping people with di‘ erent conditions.” Female, age 30–39

“Just if it would help any of my conditions basically, would it be beneficial, because I do believe that pharmaceutical companies need a kick up the arse.” Male, age 50–59

“A¤ er e‘ ects at work, driving.” Male, age 30–39

“I’d like to know its ingredients, its e‘ ects on nervous system, how it works and possible side e‘ ects.” Female, age 40–49

“What it helps for? The side e‘ ects—negative and positive. Cost. How you take it? How long you can take it for? Where to get it from?” Female, age 40–49

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the majority of these fi nding it effective, of the recent law changes2,3 and Canada, and two thirds indicating a reduction in where despite law changes patients found it use of other prescription medications. Less diffi cult to fi nd physicians to support access than half of this group stated that they had of non-pharmaceutical medicinal cannabis discussed medicinal cannabis with their due to lack of evidence for use compounded doctor. The majority of patients wanted to by its ongoing controversial status.19,24,25 know more about cannabis as a medicine It was expected that participants would from their doctor, either through accessing not be aware of specifi c medicinal cannabis websites or being given pamphlets. products. Although New Zealand is one of There are many possible reasons that may only two countries in the world that allows impact why patients display willingness to direct-to-consumer advertising of medica- discuss medicinal cannabis but do not follow tions,26 medicinal cannabis products are through with it. These include being happy excluded. As a result, patients can only with their current treatment, concerns increase their awareness through media around stigma, cost, bureaucracy, lack of reporting, accessing internet fora and trust and the fact that patients rarely initiate discussions with healthcare professionals. treatment discussions.11,17 While a ‘concor- It is of interest that of those who stated they dance’ approach to undertaking a medical were aware of Sativex®, nearly all of them consultation,17 where the patient and doctor stated that they thought it was a CBD only, have equal input into the discussion about suggesting that the public perception may medications is considered ideal, this does be that ‘medicinal cannabis’ is synonymous not always happen in practice, as patients with cannabidiol and does not contain the may not be confi dent in asking about a perceived harmful substance delta-9-tetra- treatment the doctor has not suggested hydocannbinol (THC). 18,19 for fear of upsetting them. Without this It is of interest that the majority of the patient input, the limited evidence of effi cacy group who believed medicinal cannabis may combined with the current illicit status of be benefi cial indicated that it is primarily recreational cannabis may make it less likely helpful as a pain relief, with a number of that a GP will bring medicinal cannabis up whom believed it was only useful for pain, in a consultation without a conscious plan to highlighting the widespread belief of its add this in to their usual practice. effi cacy despite patchy medical evidence for There may also be an inherent appreci- this. Currently an internet search by a patient ation of the apparent misalignment between using the terms ‘cannabis for pain relief’ progressive legislation and evidence-based will provide over 13 million results, many medical practice. Patients’ expectations are of which extol its virtues through ‘medical that doctor prescribed medicinal cannabis news’ websites. However, there is no peer-re- products are effective, ‘approved’ and viewed evidence for the use of medicinal safe. The Medical Cannabis Scheme guide- cannabis in acute pain conditions with only lines in New Zealand, where products may low-moderate evidence of effi cacy in chronic need to meet a minimum standard based neuropathic pain.27,28 Despite this, ongoing on GMP, have no requirements for clinical patient belief in the effi cacy of cannabis trials prior to being available to doctors for pain management will likely result in on prescription.20 Such products will be GPs seeing increased patient enquiries and ‘unapproved’ by Medsafe, New Zealand’s prescription requests as the use of medicinal regulatory authority, but will be able to be cannabis continues to be normalised. prescribed as an exception to the Medi- Encouragingly, 83% of participants 21,22 cine’s Act. The Medical Council of New reported wanting information about the use Zealand’s Good Prescribing Practice guide- of medicinal cannabis in the same way that 23 lines which identify strict rules for when their healthcare provider would recommend unapproved medications may be prescribed, any medicine. This indicates that patients highlights the diffi culties that doctors face in New Zealand will be generally receptive 22 if choosing to prescribe such medications. to professional recommendations as to Similar dichotomy is seen in the UK, where medicinal cannabis use as products become the NICE guidelines limit applications more widely available.

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Strengths and limitations convictions and anti-drug sentiment may The overall sample size provides have negatively impacted the response rate. reasonable confi dence in the outcomes Due to the length of the recruitment period, derived from questions with high response it is acknowledged that attitudes towards rates with the quality of data enhanced medicinal cannabis may have altered, by the availability of a study investigator however this is unable to be tested. allowing for clarifi cation of questions While the proportion of males in this during survey completion. Two partici- sample was less than that of the general pants posted in their answers as they were population, it is consistent with males unable to complete the questionnaire due attending GP consultations 30% less often time constraints, with 98.5% of responses than females.35 There was overrepre- recorded in the presence of an investigator. sentation of the elderly, which may be For the primary outcome, the proportions consistent with the population group who of participants amenable to use prescribed typically visit their GP.36 In this sample medicinal cannabis products and willing Māori were under-represented (4%), where to discuss this with their GP or specialist 8–11% of all consultations in targeted age were in excess of 90%, with lower confi - ranges would be expected,37 likely due dence interval boundaries of 85% suggesting to the geographic location of the general a relatively precise estimation of current practices involved and the demographics opinion in a GP practice patient population. of the practice population. This under-rep- There are also some methodological resentation is in keeping with previous limitations. Time-pressured patients may New Zealand research undertaken in the be less likely to complete the question- general practice population, where Māori naire at the end of a consult, resulting in were more likely to be under-represented selection bias toward those who are time in the initial recruitment and subsequent 29 rich. Response rates varied depending completion of questionnaires. This limits on reception staffi ng levels on the days the generalisability of the results, and iden- investigators were present and the limited tifi es an area in which future research could geographical representation limits national be undertaken. generalisability. Despite this, the overall response rate of 37.2% is within the Conclusion expected range when compared with GP This study suggests a not insignifi cant patient surveys undertaken in New Zealand, number of patients presenting to general the UK and Canada, which range from 19.8- practice believe that medicinal cannabis 29–31 –55.9%. Responder bias is likely in such a may provide them clinical benefi t; however, polarised topic, with those who have strong few have actively discussed this with opinions about cannabis more likely to their GP or specialist. The gap between respond, and while comparative GP patient those expressing a willingness to discuss surveys regarding medicinal cannabis use medicinal cannabis with their healthcare in the general practice population were professional and those who actually do is a not identifi ed, overseas studies in oncology concern and likely multi-factorial in nature. patient populations have reported response It is important that patients feel comfortable 32–34 rates of 27.4-–63%. Non-response bias discussing cannabis in general, both illicit was unable to be assessed due to the anon- and medical use, with doctors facilitating ymous nature of initial recruitment for these discussions. There is need for accurate the survey. While the availability of an and accessible information about the use investigator aimed to minimise confusion of cannabis as a medicine to guide patient- between medicinal cannabis use and the doctor consultations in the context of the upcoming referendum about the legali- current evidence base and legislative status sation of recreational cannabis, participant in New Zealand. concerns around illegality of cannabis, distrust of cannabis companies, previous

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Appendix Medical cannabis—patient experience questionnaire 1. Are you aware of any prescribed medical cannabis products? Yes ⃝ No ⃝ - go to question 3 2. If yes, have you heard of any of the following medications?

Aware of Primary constituents Available in Estimated cost per product? (tick all that apply) NZ? (Y/N) year to patient (Y/N) (NZ $ amt)

THC* CBD*

Dronabinol (Marinol)

Nabiximols (Sativex)

Nabilone (Cesamet)

Epidiolex

*THC = delta-9-tetrahydrocannabinol, CBD = cannabidiol.

3. Would you take a prescribed medication made from medical cannabis? Yes ⃝ No ⃝ 4. Please can you state what medical conditions you see your doctor for: ______5. Please list the prescribed medications you take for your medical conditions: ______6. Do you believe that medical cannabis products may be helpful for your medical conditions? Yes ⃝ - go to part a) No ⃝ - go to part b) a) If yes, what benefi ts do you think medical cannabis products will give you (tick all that apply)? ⃝ Symptom control (eg, spasticity, nausea/vomiting) (please list specifi c symptoms) ______⃝ Pain relief ⃝ Decrease anxiety ⃝ Cure my condition ⃝ Any other benefi ts (please list) ______

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b) If no, why not? ______7. Have you ever used recreational cannabis to treat a medical condition or symptom? Yes ⃝ No ⃝ - go to question 8 a) If yes, what medical condition or symptom did you treat? ______b) How did you take it? ⃝ Smoked (pure) ⃝ Smoked (with tobacco) ⃝ Vaped ⃝ Oil ⃝ Edibles ⃝ Other (please specify) ______c) Did you fi nd it effective for your symptoms or condition? Yes ⃝ No ⃝ - go to question 8 d) If effective, have you decreased the amount of your prescribed medications for your medical condition? Yes ⃝ No ⃝ 8. Would you feel comfortable discussing using cannabis (whole plant and/or medical product) as a medication with your GP? Yes ⃝ - go to part a) No ⃝ - go to part b) a) If yes, have you discussed medicinal cannabis (whole plant and/or medical product) with your GP? Yes ⃝ No ⃝ - go to question 9 i) If yes, did you feel you were informed about the evidence for/against use as well as any possible side effects associated with use of medicinal cannabis (whole plant and/or medical product)? Yes ⃝ No ⃝ ii) Did your GP prescribe a medical cannabis product for you? Yes ⃝ No ⃝ iii) Did you fi ll your prescription? How much did it cost you per month? Yes ⃝ No ⃝ Cost (NZ$)______iv) Have you found it effective? Yes ⃝ No ⃝ - go to question 9 v) If effective, have you decreased the amount of your other prescribed medications for you medical condition? Yes ⃝ No ⃝

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b) If No, why not (tick all that apply)? ⃝ Stigma ⃝ Worried about legal implications ⃝ Cost of product ⃝ Other (please specify) ______9. Would you feel comfortable discussing medicinal cannabis (whole plant and/or medical product) with your specialist(s)? Yes ⃝ - go to part a) No ⃝ - go to part b) I don’t see a specialist ⃝ - go to question 10 a) If yes, have you discussed medicinal cannabis (whole plant and/or medical product) with your specialist (s)? Yes ⃝ No ⃝ - go to question 10 i) If yes, did you feel you were informed about the evidence for/against use as well as any possible side effects associated with use of medicinal cannabis (whole plant and/or medical product)? Yes ⃝ No ⃝ ii) Did your specialist prescribe a medical cannabis product for you? Yes ⃝ No ⃝ iii) Did you fi ll your prescription? How much did it cost you per month? Yes ⃝ No ⃝ Cost (NZ$)______iv) Have you found it effective? Yes ⃝ No ⃝ - go to question 10 v) If effective, have you decreased the amount of your other prescribed medications for your medical condition? Yes ⃝ No ⃝ b) If no, why not (tick all that apply)? ⃝ Stigma ⃝ Worried about legal implications ⃝ Cost of product ⃝ Other (please specify) ______10. What information from your doctor would you like about cannabis as a medicine and medical cannabis products? ______11. What would be the best way we could communicate this information? ⃝ Website ⃝ Pamphlet ⃝ Poster ⃝ Podcast ⃝ Social media (Facebook/Twitter/Instagram) ⃝ Other (please specify) ______

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12. Demographic information Age (years): ⃝ Under 20 ⃝ 20–29 ⃝ 30–39 ⃝ 40–49 ⃝ 50–59 ⃝ 60–69 ⃝ 70–79 ⃝ 80+ Gender: ⃝ Male ⃝ Female ⃝ Other (please specify) ______⃝ Prefer not to disclose Ethnicity: Which ethnic group do you belong to? (Tick all that apply) ⃝ NZ European ⃝ Māori ⃝ Samoan ⃝ Cook Island Maori ⃝ Tongan ⃝ Niuean ⃝ Chinese ⃝ Indian ⃝ Other (such as Dutch, Japanese, Tokelauan). Please state: ______Source: SNZ, 2001 Census

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Competing interests: Karen Oldfi eld declares that she has received funding through a Clinical Research Training Fellowship from the Health Research Council of New Zealand (HRC). Irene Braithwaite, Alex Semprini and Karen Oldfi eld are members of the Medical Cannabis Research Collaborative (NZ), an impartial collaboration of academics and regulatory experts with an interest in research into the use of cannabis as a medicine. Ingrid Maijers, Allie Eathorne and Richard Beasley have no competing interests to declare. The Medical Research Institute of New Zealand has undertaken unrelated consultant work for RuaBio, Zealand Health Manufacturing, Whakaora Pharma and Helius Therapeutics. Acknowledgements: The authors wish to acknowledge the GP practice staff who made running this study possi- ble—thank you for your engagement. We also wish to acknowledge all the participants who took time out of their busy day to answer the questionnaire during their trip to see their doc- tor—thank you for your time and involvement. Thank you also to Victoria Catherwood (na- med with permission), our patient advocate, whose input was invaluable to the study process. Author information: Karen Oldfi eld, Senior Clinical Research Fellow, Medical Research Institute of New Zealand; PhD Student, Victoria University, Wellington; Allie Eathorne, Research Fellow, Medical Research Institute of New Zealand, Wellington; Ingrid Maijers, Medical Research Fellow, Medical Research Institute of New Zealand, Wellington; Richard Beasley, Director, Medical Research Institute of New Zealand; Professor of Medicine, Victoria University, Wellington; Alex Semprini, Deputy Director, Medical Research Institute of New Zealand; PhD Student, Victoria University, Wellington; Irene Braithwaite, Deputy Director, Medical Research Institute of New Zealand, Wellington. Corresponding author: Karen Oldfi eld, Medical Research Institute of New Zealand, Private Bag 7902, Newtown, Wellington 6242. karen.oldfi [email protected] URL: www.nzma.org.nz/journal-articles/knowledge-and-perspectives-about-the-use-of-cannabis- as-a-medicine-a-mixed-methods-observational-study-in-a-cohort-of-new-zealand-general- practice-patients

REFERENCES: 1. Misuse of Drugs 4. Schlag AK, Baldwin DS, a national survey. Harm (Medicinal Cannabis) Barnes M, et al. Medical Reduct J. 2017; 14(1):4. Amendment Act.; 2018. cannabis in the UK: From 7. Karanges EA, Suraev 2. The Misuse of Drugs principle to practice. A, Elias N, et al. Knowl- (Amendments) (Cannabis J Psychopharmacol. edge and attitudes of and Licence Fees) (England, 2020; 34(9):931–937. Australian general Wales and Scotland) 5. Oldfi eld K, Braithwaite I, practitioners towards Regulations 2018.; 2018. Beasley R, et al. Medical medicinal cannabis: A 3. National Institute for cannabis: knowledge cross-sectional survey. Health and Care Excel- and expectations in a BMJ Open. 2018; 8(7):1–9. lence. Cannabis-based cohort of North Island 8. Sideris A, Khan F, Boltun- medicinal products. NICE New Zealand general ova A, et al. New York Guideline. [Internet] practitioners. N Z Med J. Physicians’ Perspectives Available from: http:// 2020; 133(1508):12–28. and Knowledge of the www.nice.org.uk/guidance/ 6. Crowley D, Collins C, State Medical Marijuana ng144/resources/canna- Delargy I, et al. Irish Program. Cannabis bisbased-medicinal-prod- general practitioner Cannabinoid Res. ucts-pdf-66141779817157. attitudes toward decrimi- 2018; 3(1):74–84. Published 2019. Accessed nalisation and medical use 9. Gardiner KM, Singleton March 9, 2020. of cannabis: results from JA, Sheridan J, et al.

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Health professional 18. Frosch DL, May SG, Rendle 26. Lee Ventola C. beliefs, knowledge, and KAS, et al. Authoritarian Direct-to-Consumer concerns surrounding physicians and patients’ Pharmaceutical Advertising medicinal cannabis - A fear of being labeled Therapeutic or Toxic? P systematic review. PLoS “diffi cult” among key T. 2011; 36(10):669–684. One. 2019; 14(5):e0216556. obstacles to shared decision 27. National Academies of 10. Ware MA, Adams H, Guy making. Health Aff. Sciences Engineering and GW. The medicinal use 2012; 31(5):1030–1038. Medicine. The Health of cannabis in the UK: 19. Belle-Isle L, Walsh Z, Effects of Cannabis Results of a nationwide Callaway R, et al. Barriers and Cannabinoids: The survey. Int J Clin Pract. to access for Canadians Current State of Evidence 2005; 59(3):291–295. who use cannabis for thera- and Recommendations 11. Rychert M, Wilkins C, peutic purposes. Int J Drug for Research. Washing- Parker K, Graydon-Guy Policy. 2014; 25(4):691–699. ton, DC: The National T. Exploring medicinal 20. Ministry of Health- Manatu Academies Press; 2017 use of cannabis in a Hauora. Prescribing Medic- 28. Stockings E, Campbell G, time of policy change in inal Cannabis. [Internet] Hall W, et al. Cannabis New Zealand. N Z Med J. Available from: http://www. and cannabinoids for the 2020; 133(1515):54–69. health.govt.nz/our-work/ treatment of people with 12. Kruger DJ, Kruger JS, regulation-health-and-dis- chronic noncancer pain Collins RL. Cannabis ability-system/ conditions: a systematic Enthusiasts’ Knowledge medicinal-cannabis-scheme/ review and meta-analysis of Medical Treatment medicinal-cannabis-regulation/ of controlled and obser- Effectiveness and Increased upcoming-medicinal-canna- vational studies. Pain. Risks From Cannabis Use. bis-regulatory-information/ 2018; 159(10):1932–1954. Am J Heal Promot. 2020. prescribing-medicinal-can- 29. Poppelwell E, Esplin J, nabis Published 2020. 13. Gill HK, Young SD. Doust E, Swansson J. Accessed March 31, 2020. Exploring cannabis use Evaluation of the Primary reasons and experiences 21. Medicines Act.; 1981. Care Patient Patient among mobile cannabis 22. Braithwaite I, Newton-How- Experience Tool. [Internet] delivery patients. J Subst es G, Oldfi eld K, Semprini Available from: http:// Use. 2019; 24(1):15–20. A. Cannabis-based medic- www.hqsc.govt.nz/assets/ Health-Quality-Evaluation/ 14. NVivo qualitative data inal products and the role PES/MoH-PES-report- analysis software. 2018. of the doctor: should we be cautious or cautiously 18April2018_2.pdf Accessed 15. Ministry of Health. HISO optimistic? N Z Med J. 9th September 2020. 1001:2017 Ethnicity Data 2019; 132(1500):82–88. Published 2018. Accessed Protocols. [Internet] September 9, 2020. Available from: http://www. 23. Medical Council of New 30. Williams R, Lepps H. health.govt.nz/system/fi les/ Zealand. Good Prescrib- 2019 GP Patient Survey documents/publications/ ing Practice. [Internet] Results Released. [Internet] hiso-10001-2017-ethnic- Available from: http:// Available from: http:// ity-data-protocols-v2. www.mcnz.org.nz/assets/ www.ipsos.com/ipsos-mori/ pdf Published 2017. standards/ceae513c85/ en-uk/2019-gp-patient- Accessed May 2, 2019. Statement-on-good-pre- scribing-practice. survey-results-released. 16. Kwak SG, Kim JH. Central pdf Published 2020. Published 2019. Accessed limit theorem: the Accessed April 9, 2020. September 9, 2020. cornerstone of modern 31. Slater M, Kiran T. statistics. Korean J 24. Kahan M, Spithoff S. How Measuring the patient Anaesthesiol. 2017. physicians should respond to the new cannabis regu- experience in primary 17. Stevenson FA, Cox K, lations. CJAM Can J Addict care: Comparing e-mail Britten N, Dundar Y. A Med. 2013; 4(3):13–20. and waiting room survey systematic review of the delivery in a family health 25. Graham SD. Medical research on communi- team. Can Fam Physician. marijuana: Canada’s cation between patients 2016; 62(12):e740-e748. and health care profes- regulations, pharmacology, 32. Hawley P, Gobbo M. sionals about medicines: and social policy: New Cannabis use in cancer: The consequences for policy refl ects contra- A survey of the current concordance. Heal Expect. dictions in social and state at BC cancer before 2004; 7(3):235–245. medical trends. Can Pharm J. 2004; 137(1):23–27. recreational legalization

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in Canada. Curr Oncol. cannabis use in patients nants of GP visits in New 2019; 26(4):e425–e432. with cancer. Curr Oncol. Zealand. Aust N Z J Public 33. Macari DM, Gbadamosi B, 2018; 25(3):219–225. Health. 2010; 34(5):451–457. Jaiyesimi I, Gaikazian S. 35. Wang Y, Hunt K, Nazareth 37. Crengle S, Lay-Yee R, Medical Cannabis in Cancer I, et al. Do men consult less Davis P, Pearson J. A Patients: A Survey of a than women? An analysis Comparison of Māori Community Hematology of routinely collected UK and Non-Māori Patient Oncology Population. Am general practice data. BMJ Visits to Doctors: The J Clin Oncol. 2020; 43(9). Open. 2013; 3(8):1–7. National Primary Medical 34. Martell K, Fairchild A, 36. Cumming J, Stillman S, Care Survey (NatMedCa): LeGerrier B, et al. Rates of Liang Y, et al. The determi- 2001/02: Report 6.; 2005. http://www.moh.govt.nz

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Why dizziness is likely to increase the risk of cognitive dysfunction and dementia in elderly adults Paul F Smith

ABSTRACT Dementia is recognised to be one of the most challenging diseases facing society, both now and in the future, with its prevalence estimated to increase substantially by 2050. The potential contributions of age-related sensory deficits have attracted little attention until recently, when a landmark study suggested that hearing loss could be a greater risk factor for dementia than hypertension, obesity, smoking, depression, physical inactivity or social isolation. Over the last decade, evidence has been gradually accumulating to suggest that the other part of the inner ear, the balance organs or ‘vestibular system’, might also be important in the development of cognitive dysfunction and dementia. Increasing evidence suggests that dizziness associated with vestibular dysfunction, a common reason for patients consulting their GPs, increases the risk of cognitive dysfunction, including dementia, and our understanding of the basic neurobiology of this sensory system supports this view. This paper aims to review and critically evaluate the relevant evidence.

izziness is reported to be one of the In 2016, the mortality rate associated with most common reasons for patients falls in the US was estimated to be 122.2 per Dconsulting a general practitioner.1 100,000 persons.4,5 Although not all consultations regarding diz- The impact of vestibular dysfunction ziness are related to the vestibular system, on loss of balance and falls is due both to for example, they can be due to cardiovas- its effects on brainstem vestibular refl ex cular dysfunction, approximately 20–50% pathways as well as higher cognitive are believed to be due to balance disorders processing of self-motion signals from the related to the peripheral vestibular system vestibular system. The vestibular system 1 (see Table 1). Recent studies have estimat- (Figure 1) senses head movement (strictly ed that 35% of US adults over the age of speaking ‘head acceleration’ or change in 35 years suffer from vestibular disorders, head velocity) in different planes, as well 2 increasing to 85% aged 80 and over. Unfor- as linear acceleration by gravity.6 The three tunately, no reliable statistics are available semi-circular canals in each inner ear sense on the prevalence of vestibular disorders for angular rotation of the head, and the two New Zealand. However, the Health Quality otoliths, the utricle and the saccule, sense and Safety Commission reported that even linear movement.7,8 This linear movement between January and March, 2020, there not only includes movement of the head, were 65,893 fall injuries reported to the ACC, forward and backward, and left and right, 3 of which 8,544 were classifi ed as serious. but linear acceleration of the head by Overseas, impairment of the vestibular sys- gravity; the saccule, in particular, senses tem has been estimated to increase the odds linear acceleration by gravity (Figure 2 of falling by over 12-fold, and nearly 30% for explanation).7 The utricle and saccule 2,4,5 of adults aged 65 and over fall each year. detect linear acceleration as a result of

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‘otoconia’ (calcium carbonate crystals) that the environment.17 In 2014, the Nobel Prize generate an inertial force on the hair cells in Medicine or Physiology was awarded to during head movement, causing a change John O’Keefe, Edvard Moser and Britt-Mayer in electrical potential (see Figure 2).7 In this Moser for these discoveries, which have respect, it is important to note that the most become known as the brain’s ‘global posi- primitive form of the otoliths (‘statoliths’) tioning system’.18 Since then, both place cells are estimated to have evolved approxi- and grid cells have been demonstrated to rely mately 670 million years ago, and they exist on vestibular information from the inner in invertebrates such as jellyfi sh. This is ear.11–13 Therefore, one reason why vestibu- their only means of detecting upright, which lar-related dizziness contributes to falls, is is necessary for survival. Therefore, given that not only does it impair fast vestibular their evolutionary age, the otoliths might be refl exes such as the VORs and VSRs, but it expected to have developed major contribu- impairs the ability of the brain to integrate tions to balance in humans.9,10 The vestibular self-motion information and to navigate system, through short-latency brainstem through the spatial environment and form pathways, generates rapid eye movements spatial memories. Information from the that compensate for the unintentional vestibular system is distributed widely movement of the head, eg, movement of throughout the central nervous system and the head due to the pulse beat (the vestibu- is involved in higher cognitive function.11–15,18 lo-ocular refl exes or VORs) and maintains There is increasing evidence that the otoliths the stability of the visual image of the world may be important for cognitive processing on the retina.6 The vestibular system also independently of the semi-circular canals;19 generates rapid vestibulo-spinal refl exes this is one reason why the evolutionary age (VSRs) which adjust posture for uninten- of the otoliths is of interest. tional movement, enabling us to keep our In recent years, a substantial amount of 6 balance. Without a normal vestibular epidemiological evidence has been published system, vision would become blurred to support the idea that age-related hearing (a condition known as ‘oscillopsia’) and loss is a risk factor for dementia.20 For 6 balance and locomotion become disrupted. example, in a seminal study published in Information about angular and linear the Lancet, it was reported that the contri- head movement is also transmitted to higher bution of hearing loss to the incidence of centres of the brain, where it contributes to dementia was greater than hypertension, the conscious experience of moving through obesity, smoking, depression, physical the environment and to cognitive processes inactivity and social isolation.20 This result such as memory.11–15 As we move through seemed surprising, because sensory systems the environment, the vestibular hair cells in had never been considered particularly the semi-circular canals and otoliths detect important to dementia, except perhaps for every head movement, and transmit this olfactory function as a potential biomarker.21 information to areas of the brain such as the It is important to note that the Livingstone hippocampus, where it is assimilated and et al study20 was based on data from high- stored to provide a spatial map of our move- income countries and the evidence from ments.11–15 This information is integrated low-to-middle income countries is less with other sensory information, such as that convincing in this respect.22 Over the last from the visual, auditory, tactile, olfactory several years, further evidence in support of and proprioceptive systems, and formulated the importance of hearing loss for the devel- into mathematical maps of the spatial world, opment of dementia has been published, allowing us to navigate through it more although it is not entirely consistent.22–27 11–15 effectively. In the 1970s, specifi c neurons Less attention has been given to the were discovered in the hippocampus that other part of the inner ear, the vestibular selectively discharged in response to specifi c system (see Figure 1); however, evidence areas of the environment. These became is mounting that age-related vestibular 16 known as ‘place cells’. In the 1990s, related disorders could also be a signifi cant risk cells were discovered in the medial ento- factor for the development of cognitive rhinal cortex, known as ‘grid cells’, which dysfunction and dementia, along with discharged in response to multiple areas in

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Table 1: Common causes of dizziness in primary care practice. From Agrawal et al1 with permission.

Category Percent Examples Peripheral vestibular 20–50% Benign paroxysmal positional vertigo (BPPV), labyrinthitis, disease vestibular neuritis

Cardiovascular disease 10–30% Arrhythmia, congestive heart failure, vasovagal conditions (eg, carotid sinus hypersensitivity)

Systemic infection 10–20% Systemic viral and bacterial infections

Psychiatric conditions 5–15% Depression, anxiety, hyperventilation

Metabolic disturbances 5–10% Hypoglycemia, hyperglycemia, electrolyte disturbances, thyrotoxicosis, anemia

Medications 5–10% Anti-hypertensives, psychotropic drugs hearing loss.28 The vestibular system is or both, possibly with a decrease in known to degenerate with age, as with other vestibular perception; however, it is possible sensory systems, with decreases in hair cells for age-related vestibular symptoms to be in the semi-circular canals and otoliths, a sub-clinical and therefore harder to detect . reduction in the number of neurons in the Animal studies supporting the vestibular nerve and brainstem vestibular nucleus, and a deterioration of vestibular role of the vestibular system in refl ex responses.1,2 As shown in the Iceberg cognitive function model in Figure 3, clinical presentation of The literature relating the vestibular age-related vestibular symptoms usually system to cognitive function, especially 14 includes ‘presbystasis’ (the imbalance of spatial memory, dates back to the 1960’s. disequilibrium) or ‘presbyvertigo’ (vertigo), Numerous studies have reported evidence

Figure 1: Human inner ear anatomy. The cochlea and vestibular system, which encompasses the three semicircular canals (horizontal, superior (anterior vertical) and posterior vertical) and the two otolith organs (utricle and saccule), are depicted. From Agrawal et al1 with permission.

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Figure 2: (A) Schematic representation of the plates of the otolithic receptors (the utricular and saccular maculae). The arrows show the preferred polarization of the hair cell receptors across the maculae. The dashed lines are lines of polarity reversal (lpr). The striola refers to a band of receptors on either side of the lpr. Schematics of type I (B,D) and type II receptors (C,E) show how linear acceleration acts on the otoliths and so defl ects the hair bundles of individual receptors. From Curthoys et al7 with permission.

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Figure 3: Iceberg model of age-related vestibular loss.

VSR: vestibulo-spinal reflex; VOR: vestibulo-ocular reflex. ‘Presbystasis’: age-related imbalance of disequilibrium. ‘Presbyvertigo’: age-related vertigo. From Agrawal et al1 with permission. that unilateral or bilateral lesions of the (‘head direction cells’), are also dysfunc- peripheral vestibular system impair spatial tional following BVL.36 Together, these memory in various maze and foraging abnormalities in the function of place cells, tasks.14,29–31 In some cases, these have been grid cells and head direction cells, are likely conducted even 14 months after bilateral to underlie the spatial memory defi cits vestibular lesions (BVL) in rats, and the observed in animals.14,15 Furthermore, trans- spatial memory defi cits remain.32 A variety genic mice without otoconia and therefore of potentially confounding factors have without otolith function (‘otolith defi cient been controlled for, including vision, tilted mice’), but with normal semi-cir- degree of motor activity, anxiety and cular canal function, have been shown to auditory function, and the results have been have aberrant hippocampal place cell and consistent.29–32 BVL has been demonstrated head direction cell activity.36,37 In addition, to impair the function of neurons in the a variety of neurochemical changes have hippocampus that encode places in the envi- been documented in the hippocampus ronment (‘hippocampal place cells’),11,12 EEG following BVL, including changes in the activity in the theta frequency range,33–35 N-methyl-D-aspartate (NMDA) subtype of which is thought to regulate place cell glutamate receptor and muscarinic acetyl- function, and theta EEG activity among grid choline (ACh) receptors,38–40 both of which cells of the entorhinal cortex.13 Neurons in are implicated in hippocampal learning and the thalamus which encode head direction memory processes.

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Taken together, the data from animal pedunculopontine tegmental nucleus studies strongly indicate an important (PPTg), then via various nuclei to the medial role for the vestibular system in spatial septum, which releases ACh into the hippo- cognition. Although the specifi c pathways campus; a ‘head direction pathway’, from through which vestibular information the VNC via head direction cells of the reaches areas of the brain such as the anterodorsal nucleus of the thalamus (ADN) hippocampus, are yet to be fully elucidated, to the medial entorhinal cortex (MEC), to the projections from the vestibular nucleus and hippocampus; a major thalamic pathway cerebellum are likely to transmit infor- which transmits vestibular information to mation via multiple routes, particularly the parietal cortex and then on to the MEC the thalamus (see Figure 4).41 It is specu- and hippocampus; and a transcerebellar lated that there is a ‘theta pathway’, which pathway.41–43 The detailed pathways are involves projections from the brainstem depicted in Figure 4. vestibular nucleus complex (VNC) to the Figure 4: ADN, anterodorsal nucleus of the thalamus; DTN, dorsal tegmental nucleus; Interpositus N, anterior and posterior interpositus nuclei; LMN, lateral mammillary nuclei; MEC, medial entorhinal cortex; MG, medial geniculate nucleus; NPH, nucleus prepositus hypo- glossi; Parietal C, Parietal cortex; PaS, parasubiculum; Perirhinal, Perirhinal cortex; PoS, posterior subiculum (i.e dorsal part of the pre- subiculum); Post HT, posterior hypothalamus; Postrhinal, postrhinal cortex; PPTg , pedunculopontine tegmental nucleus of Gudden; Pulv, pulvinar; RPO, reticularis pontis oralis; SUM, supramammillary nucleus; ViM, ventralis intermedius nuclei of the thalamus; VLN, ventral lateral nucleus of the thalamus; VNC, vestibular nucleus complex; VPi, ventral posterior inferior nucleus of the thalamus; VPL, ventral posterior lateral nucleus of the thalamus; VPM, ventral posterior medial nuclei of the thalamus. From Hitier et al.41 with permission.

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Vestibular contributions to with behavioural assays, have also provided cognitive function in humans compelling evidence that vestibular sensory inputs are important for human spatial Consistent with the studies in animals, cognition. In a seminal study of patients many studies conducted over the last with neurofi bromatosis type 2 (NF2) who two decades have demonstrated that underwent bilateral vestibular nerve vestibular disorders are associated with section, it was observed that the NF2 patients the impairment of cognitive function in exhibited signifi cantly poorer spatial otherwise normal healthy adults.44–53 The navigation skills, measured using a virtual studies reviewed were identifi ed using a Morris Water Maze Task, which required Pubmed search between 1989 and 2020, no movement other than that of a mouse to using ‘vestibular’ and ‘cognition’ as key control a cursor on a computer screen. These words. All of the studies were included; spatial cognitive defi cits were correlated they consisted of two main types: survey with reduced hippocampal volumes and epidemiological studies; and clinical (approximately 17%) compared to age- and experimental studies (Table 2). Among the sex-matched controls.51 Only one of these symptoms that have been reported are patients exhibited total hearing loss post-op- diffi culty concentrating, defi cits in attention eratively and all of them were 8–10 years and spatial memory, verbal fl uency, mental post-BVL. Subsequent studies have provided rotation, and dyscalculia and other forms of further evidence of impaired spatial memory numerical cognition (see Table 2). Although and hippocampal atrophy in patients some 51 such studies have been published with other vestibular disorders such as since 1989, only a subset of them (21) Meniere’s disease.52,71–74 A recent study of have controlled for hearing loss, either by over 100 healthy adults reported that poorer excluding patients with hearing loss or by vestibular function was correlated with controlling for it statistically in the analysis signifi cantly reduced hippocampal volume.75 of the data.54–69 Table 2 provides a summary In our most recent study, we have found of the studies that have controlled for that age is statistically related to a bilateral hearing loss and therefore where the defi cits decrease in the volume of the hippocampus can be considered to be mainly vestibular in and the left entorhinal cortex.76 origin. Dobbels et al70 have argued that few of the studies reporting cognitive defi cits Vestibular dysfunction as a risk in humans with vestibular disorders, have factor for dementia controlled for hearing loss. However, a As a result of the animal and human careful review of the literature suggests that studies demonstrating that peripheral is not the case. Of course, there are cases in vestibular lesions caused spatial memory which vestibular and auditory symptoms defi cits, Previc77 suggested that loss of present together, for example, in Meniere’s vestibular function might be implicated in disease, in which case they are both likely the development of dementia, including to contribute to cognitive defi cits. Beyond Alzheimer’s disease (AD). His argument was controlling for hearing loss, the major based partly on the limitations of the β-am- weaknesses of the epidemiological studies yloid (Aβ) hypothesis of AD, but the idea are that they often include ‘heterogeneous can be considered independently of that vestibular disorders’ (bilateral vestibular hypothesis. The central vestibular system, loss, unilateral vestibular loss, vestibular including the brainstem VNC, contributes neuritis, benign paroxysmal positional to major cholinergic inputs to the hippo- vertigo (BPPV), etc.) and do not include the campus, which is damaged in AD.78 Bilateral same controls as the experimental studies vestibular loss in rats also results in a (see Table 2). The available experimental decrease in acetylcholine (ACh) receptors in studies are based on samples of patients the hippocampus.38 with different vestibular disorders, but each There have been only a few studies that one of them includes a sample of patients have directly investigated the relationship which is compared to a control group between vestibular function and AD, all of without vestibular dysfunction (see Table 2). them conducted by the same group. The Studies in humans which have combined fi rst studies investigated the statistical rela- structural and functional neuro-imaging tionship between vestibular dysfunction and

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Table 2: Studies conducted in humans that have reported cognitive defi cits associated with different types of vestibular dysfunction, in which hearing loss has been controlled for in some way, either by excluding subjects with hearing loss or by controlling for it statistically in a multiple logistic regression model. Where ‘No ()’ occurs, the fi rst number in the brackets indicates the number of subjects without hearing loss and the second, the total sample size.

Authors Diagnosis Cognitive impairment Hearing loss? Epidemiological Sang et al (2006)54 Heterogeneous vestibular Di‘ iculty concentrating, thoughts seem No (33/50) disorders blurred

Jauregui-Renaud et al (2008)55 Heterogeneous vestibular Di‘ iculty concentrating, thoughts seem No (37/50) disorders blurred

Jauregui-Renaud et al (2008)56 Heterogeneous vestibular Di‘ iculty concentrating, thoughts seem No disorders blurred

Semenov et al (2016)46 Vestibular dysfunction Digit symbol substitution test No

Bigelow et al (2016)44 Vestibular vertigo Cognitive impairment No

Bigelow et al (2020)57 Vertigo Attention, learning No

Clinical experimental Risey and Briner (1990/1991)58 Vertigo Dyscalculia No

Redfern et al (2004)59 Unilateral vest. nerve Increased RT for complex tasks No section

Brandt et al (2005)51 Bilateral vest. nerve Impaired spatial memory No section

Talkowski et al (2005)60 UVL Auditory reaction time No

Gomez-Alvarez (2011)61 UVL Impaired spatial orientation, di‘ iculty No concentrating

Caixeta et al (2012)62 Chronic vestibular Verbal fluency No dysfunction

Candidi et al (2013)63 BPPV, vestibular neuritis Mental rotation No

Bigelow et al (2015)45 Vestibular dysfunction Spatial cognition No

Kremmyda et al (2016)52 Bilateral vest. nerve Impaired spatial memory No (13/15) section

Moser et al (2017a)64 Vestibular neuritis Impaired numerical cognition No

Moser et al (2017b)65 Vestibular neuritis increased redundancy, impaired No generation of random numbers

Lo¤ i et al (2017)66 Vestibular deficits, ADHD Choice reaction time No

Sugaya et al (2018)67 Dizziness Trail-making test No (53/60)

Deroualle et al (2019)68 UVN Embodied spatial cognition No

Dobbels et al (2019)70 Bilateral vestibular loss Attention No

Pineault et al (2020)69 Various type of of Benton visual retention test, Trail No vestibular loss making test

Abbreviations: UVL, unilateral vestibular loss; BPPV, benign paroxysmal positional vertigo; UVN, unilateral vestibular neurectomy; ADHD, attention deficit hyperactivity disorder; RT, reaction time.

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clinical syndromes of cognitive impairment, the studies were cross-sectional, and the such as mild cognitive impairment (MCI) samples may not have been representative and AD. Harun et al79 investigated the preva- of a broader population.80 In particular, lence of vestibular dysfunction in 32 patients patients with both vestibular and cognitive with AD and 15 with MCI, compared to 94 impairment may have been more likely to controls, and estimated that patients with present than those with either condition bilaterally absent cervical vestibular-evoked alone, resulting in a potential overestimation myogenic potentials (cVEMPs, a measure of the proportion of vestibular dysfunction of saccular function), had a greater than in AD (‘Berksonian bias’).80 Fourth, it is three-fold increased odds of AD (OR 3.42, conceivable that the poor performance 95% CI 1.32–8.91, P=0.011). Furthermore, by AD patients on the cVEMP and oVEMP a 1 µV increase in cVEMP amplitude was testing could have been due to their inability associated with a decreased odds of AD (OR to understand and follow instructions; 0.28, 95% CI 0.09–0.93, P=0.038). Higher however, the authors reported that this was ocular VEMP (oVEMP, indicative of utricular not the case.79,80 Finally, the relationship function) amplitude was associated with between cVEMP/oVEMP function and AD was a decreased odds of AD (OR 0.92, 95% CI a statistical one involving logistic regression 0.85–0.99, P=0.036). However, there was and does not necessarily indicate a causal no signifi cant difference between the MCI relationship.79,80 For example, aside from group and the controls. Importantly, there the possibility that vestibular dysfunction was no signifi cant association between VOR contributed to the development of AD, it function and AD, indicating that semi-cir- is possible that AD pathology might have cular canal function was not implicated, caused vestibular dysfunction. only the otoliths, the most primitive part of One potential explanation for the rela- the vestibular system. tionship between vestibular dysfunction In a follow-up study, Wei et al80 examined and AD might be that AD pathology (eg, vestibular function in 51 patients with AD, β-amyloid (Aβ)) extends into the central 26 with MCI and 295 matched controls. The vestibular pathways from the vestibular cVEMP, the oVEMP and the VOR were all nucleus to the thalamus and beyond, tested. Compared to controls, they found thereby impairing vestibular function. that people with cVEMP impairment had a Although there have been no specifi c studies 3–4 fold increase in the odds of being in the of Aβ deposition in ‘vestibular-related MCI group (OR 3.0, 95% CI 1.1–8.5, P=0.04) areas’ of the brain, vestibular information is and those with oVEMP impairment had an distributed widely,41 (see Figure 4), therefore almost four-fold increased odds of being it is likely that AD pathology extends to in the MCI group (OR 3.9, 95% CI 1.4–11.3, many brain regions receiving vestibular P=0.01). Compared to controls, they found input. However, in a recent study of that people with impaired cVEMPs had a vestibular function in 98 participants aged fi ve-fold increased odds of being in the AD 77.3 (±8.26) from the BLSA, Aβ deposition group (OR 5.0, 95% CI 2.0–12.3, P=0.001) and was measured using amyloid C-11 Pittsburgh those with abnormal oVEMPs had a greater Compound B (11C-PB).81 The authors found than four-fold increased odds of being in the that 22.4% of the sample were positive AD group (OR 4.2, 95% CI 1.9–9.1, P≤0.001). for PiB; however, there was no statisti- Importantly, VOR gain (the ratio of head cally signifi cant relationship between the velocity to eye velocity) was not signifi cantly extent of Aβ deposition and any measure of related to group membership. vestibular function. This study was designed There are a number of limitations of these to investigate preclinical AD, but no such studies which must be noted, however. study has been performed in patients First, hearing loss was not controlled for in diagnosed with AD. Another possible expla- these studies of AD and MCI, so it is possible nation is that vestibular impairment directly that it may have been a contributing factor. contributes to medial temporal lobe neuro- Second, the sample sizes of AD patients were degeneration and AD, possibly as a result of relatively small, n=32 and 51, and therefore reduced vestibular sensory input to areas the studies need to be replicated.79,80 Third, of the brain such as the hippocampus, as occurs for auditory input.82

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Further studies have concentrated on were newly diagnosed with LOAD between whether vestibular loss is associated with 2007 and 2013, who were then matched to specifi c phenotypes of AD, especially those 4,600 controls by both age and sex. Using with spatial cognitive defi cits. Some AD multivariate logistic regression and path phenotypes are characterised by predom- analysis, the authors reported that the inci- inantly amnestic symptoms compared to dence of LOAD was positively correlated others which are characterised by more with prior anxiety (ICD code 300), functional motoric and spatial impairment.83 In a digestive disorder (ICD code 564), psychopa- study of 50 patients with MCI or AD, Wei et thology-specifi c symptoms (ICD code 307), al84 observed that patients with vestibular disorders of the vestibular system (ICD code loss were signifi cantly more likely to 386), concussion (ICD code 850), disorders of exhibit impairment in neurocognitive tests the urethra and urinary tract (ICD code 599), of spatial skills, for example the Money disorders of refraction and accommodation Road Map test (MRMT). When patients (ICD code 367) and hearing loss (ICD code were divided into ‘spatially normal’ and 389). While the authors conclude that these ‘spatially impaired’ groups based on their data suggest that vestibular dysfunction performance in the MRMT, only 25% of the may therefore be a risk factor for LOAD, spatially normal patients were found to the limitations of the study include limited have vestibular dysfunction compared to information regarding other confounding 96% of the spatially impaired patients.84 In a factors such as body mass index, blood further study of 60 patients with MCI or AD, pressure, diet, smoking, diabetic therapy patients with vestibular dysfunction were etc.; and the specifi c nature of the diag- signifi cantly more likely to have diffi culty nosis may have varied according to factors driving, an activity closely linked to spatial affecting access to a neurologist. At present, cognitive ability.85 It is possible, therefore, there are no comparable data available that vestibular dysfunction contributes to on potential vestibular contributions to the development of a ‘spatial’ subtype of dementia associated with Parkinson’s AD, increasing the probability of symptoms disease or fronto-temporal dementia. such as spatial disorientation, wandering, One of the intriguing aspects of the 84 and an increased risk of falling. However, studies in cognitively-normal and vestib- these two studies have similar limitations ular-impaired adults is the demonstration 79 to the original one by Harun et al: there of a link between saccular function and were no controls for hearing loss, the sample cognition.45,47,69,75,76,79,80,85 We have recently sizes were relatively small, the studies were reported that saccular function is a statis- 85 cross-sectional and in Wei et al, the postural tically signifi cant predictor of the decrease measurements were not specifi c to vestibular in hippocampal volume that occurs with function. Finally, the statistical association age.76 The saccule, one of the two otoliths, reported does not indicate causality. is the part of the peripheral vestibular The only available study that provides system which detects the orientation of the any evidence that vestibular loss might be head with respect to gravity and, together causally involved in the development of with the utricle, is the oldest component cognitive impairment and dementia is by of the vestibular system in evolutionary Liao et al86 They investigated prior medical terms (see Figure 2). Patients with AD conditions that were associated with late- exhibited specifi cally poorer saccular and onset Alzheimer’s disease dementia (LOAD) utricular function compared to age-matched using a population-based matched case controls.79,85 Saccular stimulation has control study based on the National Health been demonstrated to activate the multi- Insurance Research database of Taiwan sensory vestibular cortex involved in and the Catastrophic Illness Certifi cate spatial information processing .87,88 In guinea database, between the years 1997 and 2013. pigs and rats, selective electrical stimu- The defi nitions of prior diseases were based lation of the utricle and saccule has been on the fi rst three digits of the International shown to cause widespread activation of Classifi cation of Diseases, 9th Revision, the hippocampus.89,90 There is increasing Clinical Modifi cation (ICD-9-CM). The total evidence that the otoliths, the saccule in case group consisted of 4,600 patients who particular, have a critical role in spatial

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memory due to their importance in the perception of gravitational vertical.19 We Conclusions have recently reported that mice lacking The available evidence suggests that otolithic function from birth, exhibit major vestibular dysfunction, including that asso- developmental delays by post-natal day 9, ciated with age-related vestibular loss, has including spatial memory defi cits.91 Inter- a signifi cant negative impact on cognitive estingly, considerable electrophysiological function. Vestibular impairment may evidence suggests that the neurons in the therefore be a risk factor for the devel- VNC that subserve the VOR are separate opment of dementia, including AD. Previc93 from those involved in the VSR pathways has recently suggested that, given the and the pathways to the limbic system and increased prevalence of vestibular disorders neocortex.92 This means that it is possible for in females,94 vestibular dysfunction may the vestibular pathways that give rise to the contribute to their increased incidence of conscious perception of self-movement and AD. However, the majority of the evidence contribute to spatial memory, to be compro- to date is correlational; therefore, caution mised, without VOR defi cits necessarily must be exercised in interpreting these being exhibited, and that only VSRs such as fi ndings. The potential combined effects VEMPs would indicate a vestibular defi cit. of both hearing loss and vestibular loss Figure 5 summarises the hypothesis that are unknown but could be expected to be saccular dysfunction, in particular, might much greater. Of course, it is important to contribute to the development of cognitive note that some otological disorders involve dysfunction that preferentially includes both auditory and vestibular symptoms spatial cognitive defi cits. (eg, Meniere’s disease). Understanding the

Figure 5: Conceptual model of impact of aging on vestibular function (notably saccular function), which contributes to neurodegeneration of neural circuits involved in vestibular processing and deterioration, specifi cally in spatial cognitive ability. From Agrawal et al28 with permission.

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full implications of vestibular dysfunction reported that vestibular rehabilitation can for cognitive decline is potentially of great improve cognitive function in healthy adults importance for the health of the elderly, and in patients with intractable dizziness.67,97 since effective therapies are available to However, at present, studies from the US treat vestibular disorders.95 One of the prin- indicate that only a small number of people cipal treatments for vestibular impairment with AD are referred for vestibular rehabil- is vestibular rehabilitation, a suite of itation.98 Since vestibular impairment may physical therapy-based exercises in which be a modifi able risk factor for dementia, the head movements are used to stimulate the impact of vestibular loss on cognition should vestibular system and gradually encourage be considered along with hearing loss as a the brain to adapt to the loss of normal critical area for research. vestibular function.96 Several studies have

Competing interests: Nil. Acknowledgements: I would like to thank the three anonymous referees for their constructive and helpful com- ments on the manuscript. Author information: Paul F Smith, Department of Pharmacology and Toxicology, School of Biomedical Sciences and the Brain Health Research Centre, University of Otago, Dunedin; Brain Research New Zealand Centre of Research Excellence; Eisdell Moore Centre for Hearing and Balance Research, University of Auckland, Auckland. Corresponding author: Prof Paul Smith, Department of Pharmacology and Toxicology, School of Biomedical Sciences and the Brain Health Research Centre, University of Otago, Dunedin; Brain Research New Zealand Centre of Research Excellence; Eisdell Moore Centre for Hearing and Balance Research, University of Auckland, Auckland. [email protected] URL: www.nzma.org.nz/journal-articles/why-dizziness-is-likely-to-increase-the-risk-of-cognitive- dysfunction-and-dementia-in-elderly-adults

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A pragmatic diagnostic approach to myocardial infarction with non- obstructive coronary arteries Ammar J Alsamarrai, Jocelyne R Benatar, Eun Soo Chung, Jithendra B Somaratne

ABSTRACT Myocardial infarction with non-obstructive coronary arteries (MINOCA) is an increasingly recognised condition and it accounts for approximately 10% of all cases of MI. Despite the absence of obstructive coronary artery disease, patients with MINOCA are at increased risk of morbidity and mortality compared to the general population. While many well recognised conditions can present as MINOCA, it can be di‘ icult to reach a final diagnosis with certainty due to the relative infrequency of these conditions in the general population and the lack of diagnostic gold-standard tests. The most common causes of MINOCA are myocarditis, coronary vasospasm, coronary plaque disruption and coronary thrombus or embolism. These can be assessed by way of cardiac magnetic resonance imaging, intra-coronary imaging modalities and clinically relevant diagnostic blood tests, respectively. There are less common and rarer aetiologies which should be considered in the absence of an apparent cause, each with a unique diagnostic standard. By following a systematic approach of diagnostic tests, an underlying cause of MINOCA can be found in the majority of cases, allowing a directed management strategy to be pursued.

ost myocardial infarctions (MI) associated with fewer traditional risk are caused by plaque disruption of factors, and usually presents as non–ST Munderlying atherosclerotic coro- elevation MI. While the absence of signif- nary artery disease (CAD). This pathophys- icant stenosis appears to be reassuring, iologic model of acute coronary syndrome confl icting data exists regarding the risk lends itself to effective treatment strategies, of further major adverse outcomes in this including pharmacologic measures and group. Some studies show either reduced percutaneous interventions. However, an or similar risk of death to those with MI. increasingly recognised phenomenon is that Reasons for this are complex; for example, of patients who present with MI but do not women are less likely to receive cardiopro- have obstructive CAD at the time of coro- tective medication, broad defi nitions for nary angiography. This is defi ned as having MINOCA are used where the specifi c aeti- met the universal criteria of MI,1 but having ology is not precisely elucidated and there no stenosis ≥50% on angiography. In such is a difference in the incidence of specifi c cases, the term MI with non-obstructive cor- conditions, like coronary artery spasm, onary arteries (MINOCA) is applied. within different population groups. In the MINOCA should be considered a working New Zealand setting, patients with MINOCA diagnosis rather than a fi nal diagnosis. It have a lower risk of adverse outcomes is increasingly clinically recognised and and death compared to patients with accounts for approximately 10% of presen- obstructive CAD, but a signifi cantly higher tations of all MI.2 It is more common in event rate and mortality risk than patients 3 women, particularly young women, is without cardiovascular disease.

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Table 1: Overview of the causes of myocardial infarction with non-obstructive coronary arteries.

Diagnosis Proportion Diagnostic standard Management of MINOCA1 Coronary artery spasm 46%6 Coronary provocative Calcium channel blockers, testing nitrates

Plaque disruption 36%7 Intracoronary imaging Standard acute coronary syndrome treatments

Myocarditis 33%8 Endomyocardial biopsy Supportive care, or cardiac magnetic immunosuppression, resonance imaging transplantation

Coronary thrombosis 24%9 Intracoronary imaging, Anticoagulation in some and embolism thrombophilia screen cases

Spontaneous coronary 7%2 Intracoronary imaging Aspirin, beta-blockers, artery dissection revascularization in some cases

Takotsubo syndrome 7%2 Le¤ ventriculography Supportive care, ACE inhibitors

MINOCA: myocardial infarction with non-obstructive coronary arteries, ACE: angiotensin converting enzyme. 1Proportions reflect findings of individual studies and are not additive.

A myriad of conditions can cause MINOCA The presence of MINOCA should prompt (Table 1) and each requires a unique diag- a thorough review of the clinical history nostic and management approach.4 The and angiogram. Alternative causes of incidence of each condition that contributes raised serum troponin (with or without to MINOCA is low in the general population, chest pain) should always be considered, which means that there is little evidence such as pulmonary embolism and sepsis. available on how to both diagnose and treat A clinical review of the patient should be each condition. However, accurate diagnosis undertaken to exclude anaemia, hypo- remains crucial to ensure patients are on the tension and sustained tachycardia, all of most appropriate treatments.5 which may cause type 2 MI (due to supply- Proposed diagnostic algorithm demand mismatch). An assessment of the left ventricle either at angiography or with As MINOCA accounts for a signifi cant echocardiography can diagnose cardiomyop- proportion of patients with MI and is athies such as Takotsubo syndrome. increasingly recognised, there needs to be a unifi ed and systematic approach to the If this is not helpful, the angiogram should tests that ensue to reach the fi nal diagnosis. be carefully reviewed to exclude sponta- Furthermore, as the individual condi- neous coronary artery dissection (SCAD) tions that cause MINOCA are relatively and coronary thrombus or embolism. SCAD infrequent, they should all be considered can be diffi cult to diagnose as angiographic during the workup process, particularly the appearance can be subtle and initially commoner causes. We also emphasise that missed. Only a small proportion of SCAD the absence of obstructive CAD on angiog- have the classic angiographic appearance of raphy is not a satisfactory end-point in the a double lumen artery with a visible intimal workup of patients with ACS. fl ap (type 1). Most may have diffuse stenosis of varying severity (type 2) and some have We propose a simplifi ed and pragmatic lesions that mimic atherosclerosis (type 3). diagnostic approach, adapted from the Intracoronary imaging is useful if angio- American Heart Association guidelines,10 to graphic diagnosis is not obvious.11 SCAD is facilitate clinical decision making regarding more frequent in women with few tradi- appropriate investigations following tional cardiac risk factors. The median age coronary angiography (Figure 1).

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Figure 1: Proposed diagnostic algorithm for myocardial infarction with non-obstructive coronary arteries (adapted from10).

CAD: coronary artery disease, IVUS: intravascular ultrasound, MINOCA: myocardial infarction with non-obstructive coronary arteries, MRI: magnetic resonance imaging, OCT: optical coherence tomography, SCAD: spontaneous coronary artery dissection.

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is 50 years old but there is also an increased It is more common in females, in certain risk in the antenatal and peripartum ethnic groups (for example Japanese) periods. SCAD does not always strictly meet and usually presents with angina at rest. the ‘non-obstructive’ criteria of MINOCA When it presents with angina, empirical as there is usually luminal narrowing; treatment with calcium channel blockers however, initial angiographic views can and nitrates can be considered, but in the miss subtle SCAD. setting of MINOCA, provocative testing with Thrombosis and thromboembolism in intracoronary acetylcholine could be used 10,14 the coronary arteries can also be diagnosed to confi rm the diagnosis. While this test with intracoronary imaging. This is usually has lower sensitivity in young patients, seen in young patients with few traditional sequential vasoreactivity provocation 15 cardiovascular risk factors who often have tests can improve the accuracy. This can an underlying thrombophilia. One study of diagnose spasm of the epicardial arteries, 84 patients with MINOCA found that ¼ had but more sophisticated techniques may be 16,17 an inherited thrombophilia.9 This diagnosis needed to diagnose microvascular spasm. is crucial to make because of the high risk Microvascular spasm is a component of of recurrence and the possible need for coronary microvascular dysfunction, and long-term anticoagulation such as in anti- usually presents with angina rather than MI. phospholipid syndrome. A patient is only labelled with “unclas- If review of the angiogram reveals no sifi ed MINOCA” once all other possibilities diagnosis, cardiac magnetic resonance are actively excluded. (CMR) imaging is recommended. The diag- nostic yield of CMR is as high as 87% in the Conclusion 12 workup of MINOCA. It is able to charac- MINOCA is more common in women with terise myocardial tissue, quantify chamber no traditional risk factors for heart disease volumes and ejection fraction. It can and has an increased risk of mortality accurately diagnose myocardial infarction, compared to healthy individuals. It is a 13 myocarditis, and non-ischemic cardiomy- working diagnosis and further investiga- opathy such as Takotsubo syndrome and tions should be undertaken to establish hypertrophic cardiomyopathy. a specifi c cause to ensure appropriate If the CMR is normal, coronary artery treatment. When done within a short time spasm (CAS) needs to be considered. of presentation, CMR is particularly useful Spasm can affect a spectrum of vessels to establish the diagnosis in the majority of from epicardial to microvascular vessels. patients and should be routinely undertaken if no cause of MINOCA is found.

Competing interests: Nil. Author information: Ammar J Alsamarrai, Registrar, Green Lane Cardiovascular Service, Auckland City Hospital, Auckland; Jocelyne R Benatar, Research Doctor, Cardiovascular Research Unit, Greenlane Cardiovascular Service, Auckland City Hospital, Auckland; Eun Soo Chung, Bachelor of Health Sciences Student, Faculty of Medical and Health Sciences, University of Auckland, Auckland; Jithendra B Somaratne, Cardiologist, Green Lane Cardiovascular Service, Auckland City Hospital, Auckland. Corresponding author: Dr Ammar Alsamarrai, Green Lane Cardiovascular Service, Auckland City Hospital, Private Bag 92024, Victoria St West, Auckland 1142. [email protected] URL: www.nzma.org.nz/journal-articles/a-pragmatic-diagnostic-approach-to-myocardial- infarction-with-non-obstructive-coronary-arteries

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REFERENCES: 1. Thygesen K, Alpert JS, culprit lesion in acute coro- coronary arteries: incre- Jaffe AS, et al. Fourth nary syndromes without mental diagnostic value of universal defi nition of signifi cant angiographic cardiovascular magnetic myocardial infarction lesion: analysis by intravas- resonance imaging. (2018). European Heart cular ultrasound. Annales European heart journal Journal. 2018; 40(3):237–69. de cardiologie et d’angei- cardiovascular Imaging. 2. Raparelli V, Elharram ologie. 2012; 61(1):20–6. 2016; 17(10):1146–52. M, Shimony A, et al. 8. Tornvall P, Gerbaud E, 13. Friedrich MG, Sechtem Myocardial Infarction Behaghel A, et al. Myocar- U, Schulz-Menger J, et al. With No Obstructive ditis or “true” infarction by Cardiovascular magnetic Coronary Artery Disease: cardiac magnetic resonance resonance in myocarditis: Angiographic and Clinical in patients with a clinical A JACC White Paper. Insights in Patients With diagnosis of myocardial Journal of the American Premature Presenta- infarction without obstruc- College of Cardiology. tion. The Canadian tive coronary disease: A 2009; 53(17):1475–87. journal of cardiology. meta-analysis of individual 14. Roffi M, Patrono C, Collet JP, 2018; 34(4):468–76. patient data. Atheroscle- et al. 2015 ESC Guidelines 3. Williams MJA, Barr PR, rosis. 2015; 241(1):87–91. for the management of Lee M, et al. Outcome 9. Stepien K, Nowak K, acute coronary syndromes after myocardial infarc- Wypasek E, et al. High in patients presenting with- tion without obstructive prevalence of inherited out persistent ST-segment coronary artery disease. thrombophilia and anti- elevation: Task Force for Heart. 2019; 105(7):524–30. phospholipid syndrome in the Management of Acute 4. Niccoli G, Scalone G, Crea F. myocardial infarction with Coronary Syndromes in Acute myocardial infarc- non-obstructive coronary Patients Presenting without tion with no obstructive arteries: Comparison Persistent ST-Segment coronary atherosclerosis: with cryptogenic stroke. Elevation of the European mechanisms and manage- International journal of Society of Cardiology (ESC). ment. Eur Heart J. cardiology. 2019; 290:1–6. European heart journal. 2015; 36(8):475–81. 10. Tamis-Holland JE, Jneid 2016; 37(3):267–315. 5. Lindahl B, Baron T, H, Reynolds HR, et al. 15. Sueda S, Kohno H, Ochi Erlinge D, et al. Medical Contemporary Diagnosis T, Uraoka T. Overview Therapy for Secondary and Management of of the Acetylcholine Prevention and Long-Term Patients With Myocar- Spasm Provocation Outcome in Patients With dial Infarction in the Test. Clinical cardiology. Myocardial Infarction With Absence of Obstructive 2015; 38(7):430–8. Nonobstructive Coronary Coronary Artery Disease: 16. Ford TJ, Stanley B, Good Artery Disease. Circulation. A Scientifi c Statement R, et al. Stratifi ed Medical 2017; 135(16):1481–9. From the American Heart Therapy Using Invasive Association. Circulation. 6. Montone RA, Niccoli G, Coronary Function Testing 2019; 139(18):e891–e908. Fracassi F, et al. Patients in Angina: The CorMicA with acute myocardial 11. Saw J. Coronary angiogram Trial. Journal of the Amer- infarction and non-obstruc- classifi cation of sponta- ican College of Cardiology. tive coronary arteries: neous coronary artery 2018; 72(23 Pt A):2841–55. safety and prognostic dissection. Catheterization 17. Ohba K, Sugiyama S, relevance of invasive coro- and cardiovascular inter- Sumida H, et al. Micro- nary provocative tests. ventions : offi cial journal vascular coronary artery European heart journal. of the Society for Cardiac spasm presents distinctive 2018; 39(2):91–8. Angiography & Interven- clinical features with tions. 2014; 84(7):1115–22. 7. Ouldzein H, Elbaz M, endothelial dysfunction as Roncalli J, et al. Plaque 12. Pathik B, Raman B, nonobstructive coronary rupture and morpholog- Mohd Amin NH, et al. artery disease. Journal of ical characteristics of the Troponin-positive chest the American Heart Associ- pain with unobstructed ation. 2012; 1(5):e002485.

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The assessment of testamentary capacity Jane Casey, Anthony Grant

ABSTRACT In the older generations, cognitive impairment and wealth are both increasing. Doctors routinely assess decisional capacity in health matters yet are less adept in the assessment of other domains. Recent New Zealand Court decisions will likely result in increased requests by lawyers for contemporaneous medical assessments of the capacity to make a will. The clinical assessment is underpinned by the legal test for testamentary capacity. A psychogeriatrican and a barrister explain the principles and the clinical application. Careful assessments could protect the older adult and minimise the risk of a contested will a¤ er death.

reedom of choice is a fundamental hu- Capacity to decide man right. When it comes to welfare, Doctors assess capacity to consent (or to Fproperty or legal matters, decisions decline) treatment on a regular basis. The can have far-reaching implications. An seminal paper of Appelbaum and Grisso important principle in decisional capacity is established the legal standards for compe- that it is task-specifi c and cannot be gener- tence in the clinical area.1 alised. A person may have the capacity to It involves the ability to: make a decision about health issues yet have a compromised ability to manage fi nancial (a) understand relevant information; affairs. (b) appreciate the current situation and The ageing population presents with its consequences; a complexity of health and living needs. (c) rationally manipulate information; People are living longer with chronic and medical conditions and there is an increased (d) communicate a decision. prevalence of cognitive impairment. Baby These principles form the backbone for boomers are the wealthiest cohort to date the assessment of any signifi cant decision and there will be an inevitable shift of this in health and in legal settings. In short, a wealth to the next generation. There have patient must know the context in which a been higher divorce rates, new partners decision is to be made, the choices that are and blended families. Defacto and same-sex available, and understand the consequences relationships are now recognised by law of the specifi c choices.2 and the statute dealing with the division of relationship property is under review by the Criteria for testamentary capacity Law Commission. Cultural factors and global The landmark judgment for assessing mobility add to the complexity. All these testamentary capacity is the 1870 case of factors are contributing to a trend for wills Banks v Goodfellow.3 In this case the Court to be revised. held that testamentary capacity requires that a person must: In this context, knowledge of the clinical assessment in conjunction with the legal test (a) Understand the nature of a will and its for testamentary capacity is important for effects. the protection of the older will-maker. An (b) Have a knowledge of the nature and improvement in practice could lessen the extent of their estate. risk that wills be contested after death. (c) Have a knowledge of the people who

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may have a reasonable claim to their a “formula” but more as “guiding propo- estate. sitions”.6 An understanding of the legal (d) Be free from any delusions or disorder parameters informs the clinical assessment of the mind that would “poison his of the capacity to make a will. affections, pervert his sense of right The medical assessment or prevent the exercise of his natural The general practitioner is usually the faculties”. doctor who is consulted and is in the unique The presence of delusions does not, of position of having known a patient over itself, automatically invalidate a will. In a long period of time. It is crucial that the Banks v Goodfellow, the will-maker was diag- assessment is specifi c to the task. General nosed as having a psychotic disorder, yet the statements about capacity are to be avoided. Court upheld the will with a fi nding that the A letter of instruction from the solicitor persecutory delusions did not infl uence how should be obtained to provide (a) the legal he wanted to dispose of his property. test for assessing testamentary capacity and The older will-maker is more likely to (b) background details of the person’s estate have cognitive impairment, perhaps subtle, and circumstances. In a revision of a will, or otherwise diagnosed as a dementia. the previous wills and proposed changes Although there should be no assumptions should be referred to. If a will is being made made about capacity just from a diagnosis, in conjunction with other legal transactions, the Courts are increasingly aware of the the doctor needs to have full details so as to importance of memory in decision-making. be able to perform task-specifi c assessments The ability to hold and to ‘use and weigh’ of capacity of the will-maker. information in working memory, and to The interview conditions should be made access autobiographical memory regarding optimal for the person and the assessment relationships and benefi ciaries, is critical to performed at the person’s best time of day. will-making.4 The person should be interviewed on their Relatively intact memory on its own does own, (unless an interpreter is required), to not provide all the mentation necessary ensure that anyone who may benefi t from to enable effective decision-making. Exec- the will or may infl uence the outcome of the utive functions of the frontal lobes involve interview, is not present. Following an expla- working memory as well as reasoning, nation of the reasons for the assessment and planning, impulse control and judgment. obtaining consent to proceed, take a brief Impairment in these higher-level cognitive history. Check that there is no signifi cant processes may render a person unable to mood disorder or psychotic features which comprehend, appraise and then appreciate may impact on decision-making. If there is a consequences in decision-making. Preserved possibility of cognitive impairment, perform cognitive function cannot be presumed a standardised cognitive assessment, and defi cits can sometimes be subtle. An including the sub-tests of frontal-exec- assessment that a person is ‘cognitively utive function such as verbal fl uency, intact’ only has true validity if it is based abstract thinking, the trail-making test or on evidence of standardised cognitive the drawing of a clock face. The Montreal assessment incorporating a battery of Cognitive Assessment or the Addenbrooke’s frontal lobe tests. Cognitive Examination III are the preferred screening instruments. The many advances in medical science since 1870 have led to a recognition in A diagnosis of a dementia does not England that the test in Banks v Goodfellow preclude the existence of testamentary is a little out of date. In Key v Key, Justice capacity even though dementia is a disorder Briggs said that the Banks v Goodfellow test of the mind. In the Court of Appeal case of was too confi ning in the light of “the greater Woodward v Smith it was stated; “memory understanding of the mind now available may have become in some degree enfeebled; from modern psychiatric medicine”.5 The and yet there may be enough left clearly to Banks v Goodfellow test has also recently understand and make a sound assessment of been qualifi ed in 2018 by the New Zealand all those things, and all those circumstances, Court of Appeal. In Loosley v Powell, it which enter into the nature of a rational, fair 7 was said that the test is not to be used as and just testament.”

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These days, many Estates are complicated sense. A careful exploration of the rationale with the existence of trusts and companies. behind the distribution of the estate is The fact that a will-maker cannot recall important. This probing is to evaluate the the precise details of all of the assets does decision-making ability of the patient, not to not necessarily mean that the person lacks necessarily form an opinion on the decision capacity. The person should nevertheless itself. The person may have retained have a broad and general understanding language skills with the ability to cover up of his/her estate. Sometimes the process defi cits or to confabulate, yet have impaired of enquiry can help the person recall and conceptual thinking and an inability to retain the information for long enough appreciate the details and the consequences. to fi rm up a rational decision about the A person who is mentally compromised proposed distribution. may make different choices when asked the However, testamentary capacity is not same question on different occasions. In the only task-specifi c but situation-specifi c. The medical assessment, if the will-maker knows more complicated the situation, the higher that he/she wants to leave his/her assets in a the threshold for the clinical determination specifi c proportion for reasons that are clear, of capacity. If there is a proposed revision rational and consistent, then he/she might be 4 of a will that signifi cantly deviates from considered capable. previously expressed wishes, a higher level The assessment is carefully documented of understanding is required. There needs and the opinion to the lawyer should record to be the evidence that the person under- the relevant fi ndings on mental state and stood that the new will revoked the previous cognitive function. It should be stated will, can recognise the differences between whether the patient met the four compo- the old will and the new will and be able nents of the legal test to make a will and to explain the rationale for the changes. A may include detail such as the patient’s comprehensive appreciation of the estate is rationale as to why potential benefi ciaries often necessary in these circumstances.8 are included or excluded. The person needs to know the claims of The legal framework those who might expect to benefi t from the The starting point in this decisional task is will. The concept of natural benefi ciaries the presumption of testamentary capacity. includes the surviving spouse or partner This can be rebutted by evidence that raises and children of the will-maker. There needs doubt. In complex families or situations, it is to be an appreciation of the risks of claims increasingly common for the will-maker to that might be made under the legislation request an independent medical assessment of the Property (Relationships) Act 1976, as “insurance” in the advent of litigation after the Family Protection Act 1955 and the death. The question to answer for any person Law Reform (Testamentary Promises) Act seeking an opinion is: can this particular 1949. The lawyer should have explained person, with their particular mental abil- these risks to the person, and a medical ities, in this particular situation, make this assessment provides a further opportunity particular will, at this particular time? to review the person’s understanding of In the case of Loosley v Powell the will- these risks. maker was terminally unwell. Deathbed In a situation where a proposed will makes wills are potentially problematic given a signifi cant revision from a previous will, or the signifi cant physical and psychological an uneven distribution among benefi ciaries morbidity with expected death.9 The Court of a similar ranking, or where children are of Appeal emphasised the importance of to be excluded from provision, this need checking whether the will-maker compre- to be carefully explored and documented, hends the nature and effect of his or her preferably with a verbatim written record. actions. The will-maker had been unable In a complicated family with a complex past, to give a satisfactory explanation of the the person’s working memory needs to hold different provision that she had made in and consider facts and events so as to be her fi nal will and this was a material factor able to make a sound judgment consistent in the Court concluding that the will-maker with prior values and goals in the broadest lacked testamentary capacity. In the medical

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assessment, the greater the complexity evidence that the will-maker was pressured in the person’s situation, a higher level of into signing the will and circumstantial cognitive capability and emotional stability evidence is suffi cient yet “the Court must be may be necessary. satisfi ed both that the power was exercised The concept of lucid intervals or fl uc- and that the will would not have resulted but 12 tuating capacity is another area that is for that exercise”. fraught with diffi culties. It has been referred In the New Zealand jurisdiction, a clini- to in the law for over a hundred years cian’s role is generally to assess whether a and there are various descriptions of it; person was vulnerable to undue infl uence. “Intervals occurring in the mental life of an An older will-maker may be susceptible insane person during which he is completely to infl uence due to the medical conditions restored to the use of his reason, or so far of mental disorder, cognitive impairment restored that he has suffi cient intelligence, or physical co-morbidities creating depen- judgment, and will to enter into contractual dency. Social circumstances such as relations, or perform other legal acts, without isolation, changed family dynamics or disqualifi cation by reason of his disease”.10 confl ict may be fertile ground for coercion. A fl uctuation in alertness and cognitive The psychological situation, the process of function is seen in many medical conditions the procurement and undue benefi t in a and most commonly where there is a diag- will are further risk factors.13 In most cases nosis of delirium. Cognitive fl uctuations can there are several of these ‘red fl ags’ present occur in dementia, in particular dementia and, more often than not, the family or with Lewy bodies. These fl uctuations are carers are the perpetrators. Lawyers have usually short in duration, primarily in an important role in the detection and attention, and do not occur to a signifi cant protection of older vulnerable will-makers degree in episodic memory and higher-level in this often subtle form of elder abuse. executive brain functions. Such short-term In the case of Sandman v McKay, 2019, the and limited changes in mental state are Supreme Court held by a majority that where unlikely to allow a will-maker to appreciate a lawyer receives instructions to prepare a all of the factors that are needed to execute a will in circumstances where testamentary 11 valid will. capacity is in doubt, the lawyer should There are multiple factors that may lead carefully document the advice given and to a variation in mental state and physical steps taken, and, suggest to the client that a stamina which may impact on testamentary medical capacity assessment be obtained.14 capacity. A non-exhaustive list includes pain, Given the social and economic land- physical illness, medication, fatigue, stress scape, recent Court decisions and the duties and environmental changes. The critical lawyers owe to their clients, it is likely that issue for a Court to decide is whether the there will be increasing requests for contem- alteration in the mental state translates to poraneous medical assessments of the a change in the more complex function of capacity to make a will. In general practice capacity to make a will. or other continuing care settings, an under- A doctor performing an assessment of standing of the person, their family and testamentary capacity needs to be aware the social context is a distinct advantage. of factors relating to undue infl uence. If a Having the knowledge of the legal tests and will is made as a result of undue infl uence, then gaining experience in the assessment it will be invalid. In Green v Green, it was of testamentary capacity will serve many defi ned as “pressure of whatever character older patients well. If this is not practical [that] overbears the will of the testator”. It is and if the situation seems more complex a complex topic with a historical threshold and potentially contentious, or if there is of coercion, however a forceful person, concern that the person is vulnerable and not meaning to overbear a person’s deci- at risk of infl uence, then the patient and sion-making, may nevertheless do so and the solicitor should be guided to seek the their persuasive effect can amount to undue opinion of a specialist in this fi eld. infl uence. Usually there will not be direct

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Competing interests: Nil. Author information: Jane Casey, Consultant Psychogeriatrician, Auckland DHB, Vermont Street Specialists, Auckland; Anthony Grant, Barrister, Anthony Grant Chambers, Auckland. Corresponding author: Jane Casey, Vermont Street Specialists, 25 Vermont Street, Ponsonby, Auckland 1011. [email protected] URL: www.nzma.org.nz/journal-articles/the-assessment-of-testamentary-capacity

REFERENCES: 1. Appelbaum PS, Grisso T. 7. Woodward v Smith Am Acad Psychiatry Law. Assessing patients’ capaci- [2009] NZCA 215. 2015 Sept; 43(3):287–92. ties to consent to treatment. 8. Shulman KI, Himel SG, 11. Ballard C, Walker M, N Engl J Med. 1988 Dec Hull IM, Peisah C, et al. O’Brien J, Rowan E, et al. 22; 319(25):1635–8. Time to update the test The characterisation and 2. Molloy WD, Darz- for testamentary capacity. impact of “fl uctuating” ins P, Strang P. The Canadian Bar Review. cognition in dementia with Capacity to Decide. 2017; 95 (1):251–267. Lewy bodies and Alzhei- Newrange Press 1999. 9. Peisah C, Luxenberg mer’s disease. Int J Geriatr 3. Banks v Goodfellow JS, Liptzin B, Wand A, Psychiatry. 2001; 16:494–8. [1870] LR 5 QB 549. et al. Deathbed Will: 12. Green v Green [2015] 4. Shulman KI, Peisah C, assessing testamentary NZHC 1218. Jacoby R, Heinik J, et al. capacity in the dying 13. Peisah C, Reisberg B, Contemporaneous assess- patient. Int Psychoger. Finkel SI, Melding P. The ment of testamentary 2014 Feb; 26(2):209–16. Wills of older people: capacity. Int Psychoger. 10. Shulman KI, Hull IM, risk factors for undue 2009; Jun 21(3):433–9. Dekoven S, Amodeo S, et infl uence. Int Psychoger. 5. Key v Key [2010] al. Cognitive Fluctuations 2009 Feb; 21(1):7–15. EWHC 408. and the Lucid Interval in 14. Sandman v McKay Dementia: Implications for 6. Loosley v Powell [2019] 1 NZLR 519. Testamentary Capacity. J [2018] NZCA 3.

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Computers, confounding, clusters, consent, cost, COVID and consultation: how the Health and Disability Code impedes the learning health system Mark Webster, Ralph Stewart

ABSTRACT The Health and Disability Code precludes any research involving a competent patient without the informed consent of the participant. A learning health system requires rigorous evaluation of both new and established clinical practice, including low-risk components of usual care pathways. When comparing two accepted practices, the only way to control for unknown confounders is by randomisation. In some limited circumstances, particularly when comparing groups or clusters of patients, this comparison can only practicably be undertaken without consent. The current Code impedes a learning health system and is detrimental to the health of New Zealanders. It urgently needs updating.

he position of Health and Disability use. The research leading to these advances Commissioner was established in 1994, requires participant consent, and is costly Tfollowing the Cartwright Inquiry into to undertake. Breakthrough drugs, such the treatment of cervical cancer at National as PCSK-9 inhibitors which are extremely Women’s Hospital, which found research effective at lowering cholesterol levels, and had been undertaken without ethical devices such as transcatheter approaches approval or informed participant consent. to aortic valve replacement, are often very The Code of Health and Disability Services expensive. The other way is to review or Consumers’ Rights, which includes protec- audit current practice, compare it with tion from unethical research, became law in appropriate local or international bench- 1996. The Code has been reviewed at roughly marks, and introduce changes to approach fi ve-yearly intervals, but has remained large- best practice standards. This type of quality ly unchanged. Parts of the Code related to improvement initiative is not considered research have, unfortunately, not kept pace research and doesn’t usually require partic- with newer concepts in healthcare evalua- ipant consent. tion and improvement—the learning health There is a grey zone between these two system—over the last quarter century. approaches. Comparative effectiveness Healthcare improves in two main ways. studies evaluate accepted clinical practice, New drugs or devices undergo rigorous eval- where more than one drug, device or uation in traditional clinical trials. If they approach is used for the same condition. provide suffi cient clinical benefi t, at a cost a Drug and device manufacturers are health system can afford, they enter clinical focused on fulfi lling US Food and Drug

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Administration and European regulatory against relevant comparators. However, requirements, rather than undertaking the observational data, including that used for type of head-to-head comparison, which audit, is not reliable for determining the best might usefully guide clinical practice. treatment. The decision to use one treatment Because drugs and devices in accepted or strategy rather than another may be use should achieve roughly similar infl uenced by other factors, including clinical outcomes, studies comparing them some which are unknown, associated with often need to be very large to detect any favourable or unfavourable outcomes. differences. These confound the association, so estab- The ideal learning health system lished treatments or approaches can only undergoes a continual cycle of rigorously be reliably compared if they are randomly assessing what works and what doesn’t, and allocated. The challenge of identifying a modifying practice from there. The idea that true difference between established treat- usual practice should be constantly ques- ments or strategies is greater because that tioned and evaluated is not appreciated difference is usually modest. by most patients, who believe that their Clusters recommended healthcare is underpinned Another change over the last 25 years has by rigorous science. That is not usually the been the development of novel research case. In cardiology it is estimated that only methodologies. A major limitation of the 11% of guideline treatment recommenda- traditional individual participant, double- tions are based upon adequate randomised blinded, randomised, controlled trial is trial data, with half based upon expert limited external validity. Enrolled patient opinion alone.1 populations typically lack proportional There are many examples of treatments representation of the elderly, females, those given to thousands of people based on from disadvantaged populations, those with expert opinion, which are later found to co-morbidities, and most importantly when have uncertain benefi t or cause harm when evaluating treatments, those at highest more rigorous assessment is undertaken. risk for adverse events.3 In New Zealand, Computers Māori and Pacifi c peoples are very often under-represented in clinical trials. The electronic capture of health infor- mation via electronic clinical records, There has been a move towards prag- condition and procedure databases, and matic studies, aiming to enrol a more national datasets is arguably the greatest diverse study population by simplifying advance in healthcare over the last 25 trial requirements. Trials may be embedded years. It affords the opportunity to extract, in established patient or procedure regis- aggregate and analyse detailed patient and tries, and outcomes assessed by linkage health system information thereby iden- to other datasets, such as those coding for tifying shortcomings and opportunities mortality or hospital discharge diagnoses. for improvement. New Zealand is ahead Running trials within registries also allow of many other countries, including the US comparison of trial patients with those and Australia, in having a unique patient not enrolled but in the registry, thereby identifi er and national mortality, hospital providing insights into the likely generalis- discharge coding, prescribing and labo- ability of the study fi ndings. ratory datasets. In cardiology, linkage of the Comparative effectiveness studies All New Zealand Acute Coronary Syndrome - typically compare standard or accepted Quality Improvement (ANZACS-QI) database treatments applied as part of routine care to other national datasets has provided pathways to many or all patients with novel insights in many aspects of unstable a particular condition. Randomly allo- coronary disease, including disparities in cating treatment to one patient cohort health outcomes by ethnicity and by region.2 and comparing it to a different treatment Confounding applied to another cohort using cluster randomisation has advantages with regard Audit of current practice is an important to both trial administration and making the component of quality improvement initia- results more directly relevant to clinical tives, particularly if able to be benchmarked practice. Apart from more simply enrolling

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larger patient numbers thereby enabling Canadian Tri-Council Policy Statement trials to be powered for clinically relevant “allows research ethics boards to approve endpoints, cluster randomisation facilitates an alteration to the informed consent enrolment of a wide spectrum of patients process, such as a waiver of consent, if the with a particular condition, including those following criteria are met: (1) there is no often excluded from trials with individual more than minimal risk to participants, (2) randomisation. This increases the general- the alteration to consent requirements is isability, or external validity, of the study unlikely to affect the welfare of participants fi ndings. adversely, (3) it is impossible or impracti- Consent cable to carry out the research properly given the research design if prior consent The Code of Health and Disability Services is needed, and (4) there is a plan to offer Consumers’ Rights states that the consumer participants the possibility of having their has the right to be fully informed. Under data deleted from the study database”.6 section 6(1): Every consumer has the right to Similar criteria have been used in the US.7 the information that a reasonable consumer, A waiver of consent was recently granted in that consumer’s circumstances, would for Canadian sites participating in the PICS expect to receive, including … (d) notifi cation Trial, a cluster-randomised comparison of of any proposed participation in teaching various prophylactic antibiotic regimens to or research, including whether the research prevent cardiac surgical site infection.7,8 requires and has received ethical approval. A key consideration around randomly This has been interpreted as precluding allocating treatment to patients without either individual or cluster random allo- their prospective consent is whether this is cation of any aspect of patient care, without acceptable to patients. Some insights can prior written, informed consent from be gleaned from trials undertaken in the anyone affected by that care. The only acute setting where randomised treatment exceptions are studies comparing estab- has already been given, and consent can lished treatments undertaken in settings only be obtained for follow-up and use of where consent cannot be obtained without data. The SAFE, CHEST and SPLIT trials delaying time-critical treatment, such as in compared various intravenous fl uid solu- unconscious patients in intensive care. tions in the intensive care setting; fewer The National Ethics Advisory Committee than 2% of patients or their relatives (NEAC) to the Ministry of Health in their elected to opt out.9–11 In the HEAT-PPCI trial, 2012 Guidelines wrote in regard to a undertaken in patients with ST elevation “community intervention study (or cluster myocardial infarction, 0.2% of patients did intervention study)” that “individual not give consent for their ongoing partici- consent to participate … should not be pation.12 Although these observations are required if gaining that consent is imprac- potentially subject to survivor bias, very ticable, and if the benefi ts from the study few participants appear to be concerned are suffi cient and the potential harms about being included in comparative effec- 4 minimal.” However, when updated in 2019 tiveness studies. this was replaced by the more circumspect “NEAC recognises that there is a tension Cost between ethics and the legal framework Obtaining consent is costly. A typical for consent, as cluster randomised trials phase 3 pivotal, 20,000 patient, randomised generally are not designed to seek consent. cardiovascular drug trial, with individual This tension creates a legal barrier to some participant consent and randomisation, research that may otherwise meet ethical designed to comply with the requirements of standards. NEAC is aware of the tension and the US Food and Drug Administration, may support a review of the law in this area”.5 cost NZ$75 million, which approximates the annual research budget of the Health Other countries have considered this issue Research Council, the main New Zealand and come to a conclusion similar to that biomedical research funding body. The of NEAC in 2012. Following a recommen- budget upper threshold for an HRC-funded dation from the Ottawa Ethics of Cluster trial is about $1.2 million, which leads to Randomized Trials Consensus Group, the optimistic power calculations and limits

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most New Zealand studies to using surrogate rather than femoral artery as the latter is rather than clinically relevant endpoints. associated with more frequent bleeding In contrast, the New Zealand Oxygen complications, including life-threatening Trial recently compared two oxygen admin- retroperitoneal bleeding. The radial artery istration protocols in patients calling an is of smaller calibre, and vasospasm may ambulance or presenting to hospital with a occur with advancing and manipulating suspected acute coronary syndrome. It used catheters. Once the vascular sheath is a cluster-randomised, cross-over design inserted, bolus injection of an intra-arterial and was embedded in established regis- vasodilator reduces the likelihood of spasm. tries (ambulance service and ANZACS-QI). The most commonly used vasodilators are Consent was waived given the acute verapamil, a calcium channel blocker, and setting; informed consent is not possible in nitroglycerin, a nitrate. In New Zealand, patients with chest pain needing immediate roughly 60% give verapamil and 40% nitro- treatment. The trial enrolled 40,000 patients glycerin, as part of routine unit practice. over two years, and was undertaken on a The incidence of spasm in the current era is project grant of $160,000 from the National unknown but likely to be low, perhaps 2–4%. Heart Foundation.13 There are no adequately powered compar- isons of verapamil with nitroglycerin.15 Embedding trials in registries can When procedure consent is obtained, no considerably reduce costs, as can cluster New Zealand interventional cardiologist randomisation. However, many large, simple, mentions giving a vasodilator, nor which clinically relevant, randomised, comparative one; it is regarded as a routine part of the effectiveness trials are unable to be under- procedure pathway. taken if participant consent is required, because of the cost of obtaining consent. Is verapamil or nitroglycerin the better vasodilator to prevent radial spasm, when COVID used as the default option in routine The COVID-19 pandemic has challenged practice? Clinicians are free to give another and disrupted previous constraints around medication, or none at all, if they think that the way research is assessed and under- is better for a particular patient. From an taken. One example is OpenSAFELY, which individual patient perspective, any differ- used purpose-built software to analyse data ences will be small and of minimal, if any, from the electronic general practice medical clinical relevance (if spasm occurs, further records of 17 million English NHS patients, boluses of the same or other vasodilators are 5,683 of whom subsequently died from given, or smaller diameter catheters used). 14 COVID. The records were examined in situ, However, there are over three million PCI without copies being made, and with a log procedures performed worldwide each year, kept of all interactions. The study benefi tted so minor differences in either effi cacy or cost from a UK government decree allowing may be important at the population level. wider access to health data for research Because spasm is uncommon, and any purposes, and took 42 days from idea difference between vasodilators will be conception to publication. It has produced small, a trial would require almost 10,000 the most comprehensive information yet patients. A trial of this size, with indi- describing those who are at increased risk of vidual consent and randomisation, would contracting and dying from COVID. Recog- be diffi cult to justify because of the high nition of the importance of randomised cost and administrative burden relative clinical trials within the NHS has allowed for to the clinical importance of the fi ndings. the rapid and rigorous evaluation of several Trials with individual consent are partic- therapies for COVID, contrasting with other ularly diffi cult when evaluating unit countries where treatments of unproven policies, applied as the default option to the benefi t and possible harm have been advo- treatment of patients over a period of time. cated and funded. Giving verapamil for six months, deciding Case study to switch to nitroglycerin for the next six Coronary angiography and percuta- months, and collecting data on vasospasm neous coronary intervention (PCI) require would not require consent. Such audits of vascular access. Approximately 90% of practice are a strongly encouraged aspect New Zealand procedures are via the radial

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of quality assurance and continuing profes- and the evidence underpinning treatment sional development. However, adding rigour recommendations. The views of consumers, to the evaluation by randomly allocating Māori, clinicians, ethicists and the legal the order of verapamil and nitroglycerin profession all need consideration. However, administration over that 12-month period those perspectives must be informed by is currently illegal in New Zealand without understanding that, in most circumstances, individual participant consent. randomised evaluations provide the only Consultation reliable way to determine the best treatment for a patient. They may also identify The Code, very appropriately, is primarily currently used treatments or procedures designed to protect the rights of patients. which provide little or no benefi t, or cause However, it fails to achieve an equally harm, leading to their discontinuation. important outcome: to enable the healthcare system to deliver the best possible treatment to those patients, within available resources. Conclusion This goal may be achieved by having Randomised, comparative effectiveness comparative effectiveness research as an studies should be an integral part of any integral part of routine care and, in some learning health system aimed at better limited and clearly defi ned circumstances, healthcare delivery, and reducing waste and undertaken without written participant harm from ineffective treatments or strat- consent. Such research would require close egies. These should be both enabled and ethical scrutiny, with independent lay and required by those governing and funding expert input into the study design and healthcare in New Zealand. oversight. Individual autonomy around all The Health and Disability Code needs healthcare decisions which are meaningful revision to include consideration of the to the patient must be preserved, and infor- importance of embedding a healthcare mation on the trial must be freely available culture of continual evaluation and and readily accessible. improvement, and the critical role Any future changes to the Code need wide randomised evaluations have in achieving public consultation on consent, research these goals.16

Competing interests: Dr Webster reports grants from Green Lane Research and Educational Fund during the conduct of the study. Author information: Mark Webster, Green Lane Cardiovascular Service, Auckland City Hospital, Auckland; Ralph Stewart, Green Lane Cardiovascular Service, Auckland City Hospital, Auckland. Corresponding author: Associate Professor Mark Webster, Green Lane Cardiovascular Service, Auckland City Hospital, Private Bag 92024, Victoria St West, Auckland 1142. [email protected] URL: www.nzma.org.nz/journal-articles/computers-confounding-clusters-consent-cost-covid-and- consultation-how-the-health-and-disability-code-impedes-the-learning-health-system

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REFERENCES: 1. Tricoci P AJ, Kramer Sciences and Engineering the Intensive Care Unit: JM, Califf MR, Smith SC Research Council of The SPLIT Randomized Jr. Scientifi c Evidence Canada, Social Sciences and Clinical Trial. JAMA. Underlying the ACC/AHA Humanities Research Coun- 2015; 314:1701–10. Clinical Practice Guidelines. cil of Canada. Tri-Council 12. Shahzad A, Kemp I, Mars JAMA. 2009; 301:831–41. Policy Statement: Ethical C, et al. Unfractionated 2. Grey C, Jackson R, Wells S, Conduct for Research heparin versus bivalirudin et al. Trends in ischaemic Involving Humans2014 in primary percutaneous heart disease: patterns 29 May 2020. Available coronary intervention of hospitalisation and from: http://ethics.gc.ca/ (HEAT-PPCI): an open-label, mortality rates differ by eng/documents/TCPS_2- single centre, randomised ethnicity (ANZACS-QI 21). 2014_FINAL_Web.pdf controlled trial. Lancet. The New Zealand Medical 7. U.S. Department of Health 2014; 384:1849–58. Journal. 2018; 131:21–31. & Human Services, Offi ce 13. Stewart R, Jones P, Dicker 3. Tahhan AS, Vadugana- for Human Research B, et al. The New Zealand than M, Greene SJ, et Protection. Attachment Oxygen Therapy in Acute al. Enrollment of Older D: Informed Consent and Coronary Syndromes trial Patients, Women, and Waiver of Consent2013. (NZOTACS). ESC Congress Racial and Ethnic Minori- Available from: http:// 2019 together with World ties in Contemporary Heart www.hhs.gov/ohrp/ Congress of Cardiology Failure Clinical Trials: A sachrp-committee/recom- 2019; Paris, France: Euro- Systematic Review. JAMA mendations/2013-janu- pean Society of Cardiology. ary-10-letter-attachment-d/ cardiology. 2018; 3:1011–19. 14. Williamson E, Walker AJ, index.html 4. National Ethics Advisory Bhaskaran KJ, et al. Open- Committee. Ethical 8. van Oostveen RB, Rome- SAFELY: factors associated Guidelines for Interven- ro-Palacios A, Whitlock with COVID-19-related tion Studies: Revised R, et al. Prevention of hospital death in the linked edition2012 29 May Infections in Cardiac electronic health records 2020. Available from: Surgery study (PICS): study of 17 million adult NHS http://www.moh.govt. protocol for a pragmatic patients. medRxiv. nz/notebook/nbbooks. cluster-randomized 2020:2020.05.06.20092999. factorial crossover pilot nsf/0/A1E97A72A3AC8BC- 15. Curtis E, Fernandez trial. Trials. 2018; 19:688. 3CC257A60000B1D3B/$fi le/ R, Lee A. The effect of ethical-guidelines-for-inter- 9. Finfer S, Bellomo R, Boyce vasodilatory medications vention-studies-2012v2.pdf N, et al. A comparison of on radial artery spasm 5. National Ethics Advisory albumin and saline for in patients undergoing Committee. National fl uid resuscitation in the transradial coronary artery Ethical Standards for intensive care unit. N Engl procedures: a systematic Health and Disability J Med. 2004; 350:2247–56. review. JBI database of Research and Quality 10. Myburgh JA, Finfer S, Bello- systematic reviews and Improvement2019 29 May mo R, et al. Hydroxyethyl implementation reports. 2020. Available from: starch or saline for fl uid 2017; 15:1952–67. http://neac.health.govt.nz/ resuscitation in inten- 16. Webster M, Stewart R, system/fi les/documents/ sive care. N Engl J Med. Aagaard N, et al. The publications/national-eth- 2012; 367:1901–11. learning health system: ical-standards-health-dis- 11. Young P, Bailey M, Beasley trial design and participant ability-research-quality-im- R, et al. Effect of a Buffered consent in comparative provement-2019.pdf Crystalloid Solution vs effectiveness research. Eur 6. Canadian Institutes of Saline on Acute Kidney Heart J. 2019; 40:1236–40. Health Research, Natural Injury Among Patients in

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Management of personal protective equipment in New Zealand during the COVID-19 pandemic: report from the Auditor-General Elizabeth Fenton

ABSTRACT In June 2020 the O‘ ice of the Auditor-General released its report on the management of personal protective equipment (PPE) in New Zealand during the COVID-19 pandemic. The report raises three issues of ethical concern: inadequate stock, inequity and complacency. Acting on the report’s recommendations is a critical step in strengthening New Zealand’s preparedness for future public health crises.

n June 2020 the Offi ce of the Auditor-Gen- which disproportionate deaths of healthcare eral released its report on the Ministry of workers were attributed, at least in part, to IHealth’s management of personal protec- lack of adequate PPE.6,7 The Auditor-Gener- tive equipment (PPE) during the early stages al’s report highlights three issues of ethical of New Zealand’s response to COVID-19. concern in the Ministry of Health’s manage- Relative to other countries New Zealand has ment of PPE. (so far) fared well in this pandemic, with Inadequate stock the number of cases staying well within the The report makes clear that stocks of PPE capacity of our health system to manage held by DHBs and the Ministry of Health them. As in other countries, however, health were inadequate. This was in part because workers have expressed concerns that they existing calculations for how much PPE have not had access to the PPE that they felt should be held in the national reserve were was required in the clinical circumstances based on outdated population fi gures and in which they found themselves. Numbers modelling for an infl uenza pandemic.8 In from April 2020 indicate that 10% of cases addition, funding for the reserve stocks in New Zealand at that time were health- of PPE held by DHBs was for hospital use care workers, of which half were infected only, and did not include meeting the in their workplace.1 This number refl ects needs of health and disability workers in the World Health Organization’s estimate the community, or non-health essential (at the time of writing) that 10% of all cases workers.8 The Ministry confi rmed to the of COVID-19 globally are among healthcare Auditor-General that the national reserve of workers, though the percentage varies be- PPE was “only to support DHBs and not the tween countries and regions.2 Recent studies wider sector or non-health sector.”8 Poor indicate that front-line healthcare workers stock management also meant that a signif- are at increased risk for COVID-19 infection, icant amount of PPE stock held by DHBs and that availability, quality and correct use had expired.8 of PPE can reduce this risk.3–5 These fi nd- ings refl ect historical data from previous These defi ciencies in stock levels and infectious disease outbreaks, such as the management are of ethical concern for 2014–2016 Ebola epidemic in west Africa, in two reasons. First, in the circumstances of a pandemic we depend on the availability

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and willingness of healthcare workers, and Inequity all those who work in healthcare facilities, The second issue raised by the report is to continue to come to work. However, inequity in the availability and distribution their willingness to do this, even their duty of PPE across the health and disability to do this, is in turn conditional on the sector. As noted above, the funding provided provision of the equipment, and training to DHBs in 2005 to purchase PPE supplies for in the use of that equipment, needed to the national reserve was based on modelling minimise the level of risk to which they that assessed PPE needs for hospital use are exposed. If healthcare workers have a only, and did not include the needs of the duty to come to work during a pandemic, wider health and disability sector or the then we as a society, through our elected non-health sector.8 government and its institutions, have a On 31 March 2020 the Ministry instructed reciprocal obligation to protect their well- DHBs to establish a process to distribute PPE being so far as is possible.9,10,11 to all publicly funded health and disability Second, inadequate resources for providers who deliver health and disability healthcare workers to do their jobs safely, services, including those not directly funded alongside other defi ciencies in the systems by DHBs.8 While some DHBs made efforts to for managing and accessing those resources, follow this instruction, at least one reportedly undermines the trust those workers have told community-based workers that it had in the institutions for which they work. only enough supplies to maintain DHB Without addressing the appropriateness services, that the only PPE requirement of the Ministry’s clinical guidance on PPE relevant for them was fastidious hand use, the Auditor-General’s report highlights hygiene, and that they could contact private that, in addition to confusion and apparent medical suppliers for additional PPE.8 While mixed-messages about the use of PPE, there this advice might have been directed towards was a discrepancy between what workers non-funded services and non-health sector felt they needed to be safe, and what the workers, it nevertheless highlights a deeper clinical guidance stated was necessary. concern that community-based health and The Auditor-General received correspon- disability providers, and the people they dence from health and disability workers care for, are deprioritised relative to hospi- (and those they were caring for) expressing tal-based workers. To the extent that such concern that the Ministry’s guidance was prioritisations refl ect higher risk levels they “too narrow” and that “the guidelines did are appropriate and justifi ed—higher risk not provide what they felt they needed justifi es higher levels of PPE—but all health 8 to feel safe delivering care”. One DHB workers providing in-person care during a reportedly responded to the concerns of its pandemic require PPE at some level to refl ect workers by distributing “what people were the risks of close human contact for both asking for rather than what the guidelines workers and those they are working with. At 8 recommended”. the time of writing, fi ve out of 16 clusters of Healthcare workers’ willingness to work COVID-19 In New Zealand occured in aged during a pandemic will depend in part on residential care facilities, highlighting the trust that guidance on the use of PPE is risks for community-based care workers driven by concern for protecting their safety and those they care for. These risks must be as much as possible, and not concern to refl ected in the availability of PPE and other protect inadequate stocks. This will refl ect critical resources. a deeper level of trust that the system as The Ministry and DHB’s approach to a whole is well-resourced and suffi ciently providing PPE to the wider health and robust to deliver services safely during a disability sector, as refl ected in this report, crisis. The concern that clinical guidelines was at best confusing and piecemeal, and did not refl ect what healthcare workers felt at worst inequitable and unjust. Healthcare they needed, and the reported experiences workers who were community based or of workers who were not able to obtain worked outside the funding mechanisms equipment they felt they needed, amplify of the DHBs were overlooked in emer- distrust in the capacity of the healthcare gency planning and preparations. Given the system to function during a crisis. vulnerability of this sector to the risks of

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infectious disease, and its value in providing looking vision of how the community can critical care and support in the community, be made a better environment for all its there is no justifi cation for such oversights. members in the future”.13From this civic Complacency perspective, complacency with respect to emergency preparedness is both an ethical The third ethical concern raised by the failure and a signifi cant oppportunity lost: Auditor-General’s report is apparent compla- an opportunity to strengthen social capital cency towards emergency planning and within communities, improve resilience, and preparedness. With respect to the Minis- to direct attention to core values and moral try’s decentralised model for procurement commitments that provide ‘compass points’ of PPE, the report notes that the model when crises occur. In calling for a “whole of prevented the Ministry from making community/whole of government” approach informed decisions quickly, and to ensure to managing PPE the Auditor-General that “the right product was provided to the refl ects this more aspirational view of emer- right people, at the right place, at the right gency planning as an activity that can bring time”. An operational plan should have been communities together.8 part of general pandemic preparedness, “rather than trying to plan as the pandemic An ethical dilemma was unfolding”.8 The report also observes The Auditor-General’s report concedes that the response to COVID-19 revealed the that there is likely to be tension between the extent to which the Ministry’s oversight interests of healthcare workers in main- of PPE reserves had “fallen away over the taining a high level of personal protection years”.8 It is worth noting in this context that and the interests of the Ministry and DHBs warnings around supply and availability of in prioritising the appropriate use and allo- PPE for healthcare workers were sounded cation of PPE stocks.8 This concession draws long before the COVID-19 pandemic, so attention to a dilemma at the heart of emer- increased demand was predicatable.12 gency preparedness: how to balance the Emergency planning and preparedness goals of preparedness for future uncertain activities are ethically important for two emergencies, and meeting demands on the reasons. First, the public deliberation health budget in the present.Stockpiling required for the complex and diffi cult for future emergencies has opportunity questions that arise during public health costs, and so must be done with adequate emergencies cannot happen in the thick attention to the potential health benefi ts lost of a crisis. Public health emergencies are by investing in resources that might not be 14 characterised by uncertainty, urgency, politi- used. More generally, this tension refl ects cisation and fear, and are not conducive to a commitment within public health to two broad public engagement in diffi cult moral conceptions of justice that can be at odds questions about how to allocate scarce with each other. Its concern for improving resources or restrict individual liberty for the health of populations gives public health the greater good. Although the conclusions a natural affi nity with utilitarian principles of any such deliberation need to be revisable of justice that emphasise maximising net in light of evolving emergency situations, benefi t or welfare. Yet public health is also they are best reached, at least provisionally, deeply committed to fairness and equity during the planning phase, rather than in in the distribution of burdens and benefi ts the heat of the moment.13 Second, emer- across society. When managing resources gency planning is valuable as an activity in for public health emergencies these twin itself. Emergency planning should be viewed foci of effi ciency and equity require both as a civic practice that presents opportu- that we pay attention to opportunity costs, nities for citizens to engage out of a sense of and also to meeting the needs of those likely solidarity and responsibility for the health to be most burdened by the risks of any of our shared community.13 On this view future public health crisis. emergency planning aspires to more than As with most ethical dilemmas, reso- the production of plans to be consumed, lution lies somewhere between the two it is “a convenant of public trust” that can poles. Put simply, the best preparation embody “both the remembered traditions for future public health emergencies is to and values of a community and a forward- invest in maintaining a robust public health

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system.14 Despite New Zealand’s success in for healthcare workers. The importance managing COVID-19 to date, public health of training in the procedures for safely infrastructure is weaker than it could or putting on and taking off PPE, and regular should be. In his refl ections on public health fi t testing, are not considered in the in New Zealand epidemiologist and public report, nor is the critical role of occupa- health physician Sir David Skegg describes tional health practioners in preparing all the decline in political support for public healthcare workers to protect themselves. health in this country, noting that crises The scope of the report is limited in several such as the Campylobacter outbreak in other important respects. In particular, Havelock North in 2016, which infected 40% it does not address in detail access to PPE of the population, and resulted in at least for non-health essential workers, nor does three deaths, must be attributed, at least it review the clinical guidance on PPE use in part, to failures within the government from the Ministry of Health, though it adequately to resource and value public describes reactions to this guidance from health services.15 These failures stem from healthcare workers. Nevertheless, the the “invisibility of public health”: except report shows PPE to be a bellwether for in times of crisis, public health is far from emergency preparedness and response in public view or concern, and the benefi ts of New Zealand. Accepting and acting on its the investments required to sustain it are recommendations will be important for often not realised until long into the future. strengthening our emergency preparedness The Auditor-General’s report focuses for the future. It is also an opportunity primarily on the provision and to build trust in and commitment to our management of PPE equipment, and public health system, within the whole does not address the fact that PPE is just health and disability sector, and the one element of respiratory protection community more broadly.

Competing interests: Nil. Author information: Elizabeth Fenton, Bioethics Centre, University of Otago, Dunedin. Corresponding author: Dr Elizabeth Fenton, Bioethics Centre, University of Otago, 60 Clyde Street, Dunedin. [email protected] URL: www.nzma.org.nz/journal-articles/management-of-personal-protective-equipment-in-new- zealand-during-the-covid-19-pandemic-report-from-the-auditor-general

REFERENCES: 1. Ministry of Health [Inter- 10,000 health workers the general community: net]. Wellington: Ministry in Africa infected with a prospective cohort of Health. 9 new cases COVID-19; 2020 Jul 23 study. Lancet Public of COVID-19; 2020 Apr [cited 2020 Aug 18]. Health [Internet]. 2020 19 [cited 2020 Aug 18]. Available from: http:// Jul 31 [cited 2020 Aug 18]; Available from: http:// www.afro.who.int/news/ http://doi.org/10.1016/ www.health.govt.nz/ over-10-000-health-work- S2468-2667(20)30164-X news-media/media-releas- ers-africa-infected-covid-19. Available from: http:// es/9-new-cases-covid-19 3. Nguyen LH, Drew DA, www.thelancet.com/ 2. World Health Organization Graham MS, et al. Risk of journals/lanpub/article/ [Internet]. Geneva: World COVID-19 among front-line PIIS2468-2667(20)30164-X/ Health Organization. Over health-care workers and fulltext

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4. Chou R, Dana T, Buckley Available from: http://blogs. owe us: why their duty to DI, Selph S. Epidemiology bmj.com/bmj/2020/03/25/ treat during a pandemic of and risk factors for healthcare-workforce- is contingent on personal Coronavirus infection in safety-and-ebola-in-the- protective equipment health care workers: A context-of-covid-19/ (PPE). J Med Ethics [Inter- living rapid review. Ann 8. Controller and Audi- net]. 2020 May 22 [cited Intern Med [Internet]. tor-General [Internet]. 2020 Aug 18]. Available 2020 Jul 21 [cited 2020 Aug Ministry of Health: from: http://jme.bmj. 18]; http://doi.org/10.7326/ Management of personal com/content/46/7/432 doi: M20-1632 Available from: protective equipment in http://dx.doi.org/10.1136/ http://www.acpjournals. response to Covid-19; 2020 medethics-2020-106278 org/doi/full/10.7326/ Jun [cited 2020 Aug 18]. 12. Institute of Medicine M20-1632?journalCode=aim Available from: http://oag. [Internet]. Preparing for 5. World Health Organization parliament.nz/2020/ppe an Infl uenza Pandemic: [Internet]. Geneva: World S. 3.1, 3.9, 3.10, 3.29, 4.2, Personal Protective Health Organization. Short- 4.13, 4.16, 4.17, 4.21, 4.29, Equipment for Healthcare age of personal protective 5.20, 5.41, 6.19, 6.27, 7.54 Workers. Washington, equipment endangering 9. Fenton E. Personal DC: National Academies health workers worldwide; protective equipment for Press; 2008. http://doi. 2020 Mar 3 [cited 2020 Aug frontline health workers: org/10.17226/11980. 18. Available from: http:// an ethical imperative. 13. Jennings B, Arras JD. Ethi- www.who.int/news-room/ 2020 Mar 31 [cited 2020 cal aspects of public health detail/03-03-2020-shortage- Aug 18]. In: Journal emergency planning and of-personal-protective- of Medical Ethics Blog response. In: Jennings B, equipment-endangering- [Internet]. Available from: Arras J, Barrett D, Ellis BA, health-workers-worldwide http://blogs.bmj.com/ editors. Emergency Ethics: 6. Evans DK, Goldstein M, medical-ethics/2020/03/31/ Public Health Prepared- Popova A. Healthcare personal-protective-equip- ness and Response. New worker mortality and ment-for-front-line- York: Oxford University the legacy of the Ebola health-workers-an-eth- Press; 2016. p. 1–103. epidemic. Lancet [Inter- ical-imperative/ 14. Daniels N. Justice, resource net]. 2015 Jul 9 [cited 2020 10. Dawson A. Professional, allocation, and emergency Aug 18]; 3(8):e439–e440. civic, and personal preparedness: Issues Available from: http://www. obligations in public health regarding stockpiling. thelancet.com/journals/ emergency planning and In: Jennings B, Arras J, langlo/article/PIIS2214- response. In: Jennings B, Barrett D, Ellis BA, editors. 109X%2815%2900065-0/ Arras J, Barrett D, Ellis BA, Emergency Ethics: Public fulltext editors. Emergency Ethics: Health Preparedness 7. Diamond MB, Woskie Public Health Prepared- and Response. New L. Covid-19: Protecting ness and Response. New York: Oxford University frontline health care York: Oxford University Press; 2016. p. 104–134. workers—what lessons can Press; 2016. p. 186–219. 15. Skegg D. The Health of the we learn from Ebola? 2020 11. Schuklenk U. What People. Wellington: Bridget Mar 25 [cited 2020 Aug 18]. healthcare professionals Williams Books; 2019. In: BMJ Opinion [Internet].

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New Zealand doctors and euthanasia—legal and practical considerations of the End of Life Choice Act Bruce CH Tsai, David B Menkes

ABSTRACT AIM: To provide an overview of the New Zealand End of Life Choice Act in comparison with other countries, arguments for and against euthanasia, and consideration of relevant legal and practical issues. METHOD: Structured descriptive summary of criteria for medical euthanasia in various jurisdictions currently allowing the practice, compared with New Zealand legislation. Narrative review of arguments for and against euthanasia with reference to existing medical literature and legal cases. RESULTS: A strong case for medical assistance in dying, based on autonomy and quality of life arguments, is countered by a long history of medical and legal tradition protecting life. CONCLUSION: This highly contentious issue is coming before the New Zealand public as a referendum in October 2020. The results will have profound implications for medical practice as well as reflecting societal shi¤ s in attitudes toward death and dying.

n October 2020, New Zealanders will be The EoLCA Referendum is also binding asked if they support the implementa- on an Act that has passed in parliament Ition of the End of Life Choice Act 2019 and received Royal Assent. Accordingly, the (EoLCA): (http://www.legislation.govt.nz/ specifi cs and technicalities are fi nalised, act/public/2019/0067/latest/whole.htm- highlighting the importance for voters l#DLM7285905).1 to understand the Act’s details. A link to This referendum has particular impli- the offi cial Government website has been cations for doctors; as practitioners who included (though this link may not be may be asked to hold the syringe, there is functional after the referendum): www. little room to abstain. Clinicians require a referendums.govt.nz/endofl ifechoice/ 3 good understanding of the Act and, in the summary.html. interests of clarity, we have compiled a A brief summary of New Zealand legal glossary of relevant terms. For the purposes criteria is presented in Table 1, alongside of this Viewpoint, ‘euthanasia’ signifi es both those approved in other countries. voluntary euthanasia and physician-assisted The EoLCA additionally stipulates that suicide (see Appendix). euthanasia: Confusion regarding terminology is • must be indicated on the death certif- widespread among the public; many New icate, along with the terminal illness Zealanders appear to falsely believe the that gave rise to the patient’s eligibility EoLCA applies to end-of-life practices • cannot be requested by anyone other currently legal, such as turning off life- than the patient support, implementing ‘do not resuscitate’ requests, and ceasing active investigation • does not require: and treatment.2 When people are given • prior access to appropriate proper defi nitions, strong views on both medical or palliative care sides of the debate soften.2

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Table 1: Comparison of proposed New Zealand law with other jurisdictions.

Physician Voluntary Eligible age Medical Can be assisted euthanasia prerequisite requested (self-admin) (other- via advance admin) directive New Zealand Yes Yes 18+ Terminal (6 No months)

Netherlands Yes Yes 12–15 with Unbearable Yes parental su‘ ering with consent, no prospect of under 1 with improvement parental consent, otherwise 16+

Belgium Yes Yes Up to 17 with Terminal illness for Yes ‘a capacity of children, otherwise discernment’ ‘medically futile and parental condition’ consent, otherwise 18+

Canada Yes Yes 18+ Grievous and No irremediable medical condition

Oregon, US Yes No 18+ Terminal (6 No months)

Luxembourg Yes Yes 16+ with Grave and Yes parental incurable condition consent, otherwise 18+

Colombia No Yes 6–13 with Terminal phase of Yes if in parental disease audio consent, or video otherwise recording 14+

Western Yes Yes 18+ Terminal (6 No Australia months, 12 months for neurodegenerative)

Victoria, Yes Yes, only if 18+ Terminal (6 month) No Australia unable to self-admin

Switzerland Yes No No limit No limit No

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• a ‘cooling off’ period between Zealand (SCENZ) Group, to be established request and implementation by the Ministry of Health. Objectors are not • an independent witness at any required to make onward referrals. stage of the process The EoLCA is silent on objection for organi- sations, eg, hospices, though there has been • the individual to inform anyone a recent High Court case which granted of their decision limited declarations around interpretation • the doctor to reconfi rm compe- of the Act.4 Also absent are legal require- tence when patients affi rm the ments for nurses, pharmacists or other decision to proceed at the chosen health professionals who may conscien- time for administration of the tiously object; overseas evidence notably lethal substance indicates nurses are often approached fi rst Conscientious objection with enquiries about euthanasia.5 Conscientious objection is defi ned in Summary of arguments the EoLCA as any objection to eutha- Table 2 summarises some of the more nasia on the grounds of conscience. The common arguments for and against eutha- Act requires medical objectors to inform nasia. Relevant moral and philosophical patients of their objection and advise they considerations are beyond the scope of this can seek a replacement from the Support paper.6 and Consultation for End of Life in New

Table 2: Arguments for and against legalising euthanasia.

For euthanasia Against euthanasia Role of doctors Important facet of medical care for the terminally ill Antithetical to “First, do no harm”

Legal • Law protects freedoms • Law protects the vulnerable • EoLCA has suitably restrictive eligibility criteria • Di‘ icult to prevent expansion of eligibility criteria • Law reflects and adapts to societal shi¤ s • Violates legal tradition and purpose of protecting • Remedies situations where terminal patients are life allowed to die but with unnecessary pain and • Di‘ icult to protect patients from coercion su‘ ering

Vulnerable people Assists those with terminal conditions, intractable Possibility of cases progressing to euthanasia without su‘ ering, loss of dignity an explicit wish to die

Mental health Awareness of euthanasia option reduces psychological End of life depression and anxiety are o¤ en treatable distress

Criteria expansion • Could reflect acceptance of better ways of dying • Signals poor legal safeguards (‘slippery slope’) • ‘Right to die’ should exist • Could make coercion more likely

Moral • Respect for autonomy • Sanctity of life • Utilitarian benefits from healthcare savings • Perverse incentives for euthanasia • Unintended influences on funding or provision of healthcare

Cultural Opportunity to constructively reflect and reshape ‘Life unworthy of life’ becomes socially acceptable societal attitudes toward death concept

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Role of doctors The emotional demands of euthanasia The role of doctors in enabling patient work are inadequately understood. In a autonomy is evident in abortion, which, qualitative study of Dutch doctors involved without medical assistance, may result with euthanasia for patients with dementia 16 in unnecessary harm.7 Similarly, without (legal in the Netherlands), the value of assistance, a patient’s desire to die may investing time to improve quality of care result in cruder methods of suicide, risking was strongly endorsed but seen as chal- more suffering and trauma, or decisions to lenging, with some choosing to work on end life earlier. days off. All doctors felt there could be more support for those involved, and Many supporters believe access to eutha- described the work as emotionally intense, nasia is vital in ensuring a ‘right to die’, both negatively (moral distress, frustration, despite this principle failing to be affi rmed anger, insecurity) and positively (‘feeling in by the US Supreme Court,8 the UK Supreme control’, heroism, satisfaction, relief).16 Court,9 the European Court of Human Rights10 and the New Zealand High Court.11 The nursing role is crucial; a Dutch study Not all legal experts agree, however. As US showed them to be the fi rst point of contact 5 Supreme Court Justice Souter said regarding in almost half of the requests. Nurses are assistance in dying, “There can be no actively involved in voluntary euthanasia, stronger claim to a physician’s assistance even when not legally sanctioned (21% in than at the time when death is imminent”. the Netherlands), cf. 59% in Belgium, where 5 Advocates also point out that legal and it is legal. judicial opinion often move slower than Other research suggests a lack of support societal shifts in attitude. for nurses who may feel pressured to take Some people from both sides of the issue part to uphold their ‘duty of care’, even contend that euthanasia should not be solely though conscientious objection is ‘legally’ a medical decision, and instead advocate permissible. Both supporters and objectors court involvement, consistent with other voiced concern about available support complex medical decisions.12 Some also posit and clarity regarding professional and legal 17 that a separate profession should ensure requirements. The EoLCA is silent on some that the procedure is done safely from a of these issues, highlighting the impor- technical perspective, thus protecting the tance of ensuring nurses are supported, doctor’s role as a healer. and aware of their legal obligations and protections. On the other hand, consistent with NZMA’s updated Code of Ethics,13 opponents disagree Lastly, relatively little is known about the with any medical involvement because they impacts of asking health professionals to see euthanasia as incompatible with the participate in euthanasia. Moral distress doctor’s role. The doctor-patient relationship arises when clinicians believe they are remains asymmetrical in terms of power; unable to act in patients’ best interests how doctors communicate information can and thus includes concerns about wrongly determine whether a patient chooses to approving or withholding euthanasia. Both undergo risky investigations or treatments. possibilities need to be considered and Opponents point to evidence overseas that appropriately managed. the primary motivation for requesting Palliative sedation is sometimes mislead- euthanasia is not unbearable pain but the ingly regarded as an example of ‘euthanasia’ perceived loss of dignity14,15 and note the when it hastens death.18 To whatever extent crucial role doctors can play in addressing this occurs, there is a strong case that that. Indeed, there is often emotional asym- palliative sedation and euthanasia remain metry when seriously ill patients look to distinct due to differences in intent (as their doctors for guidance and reassurance. described by the principle of double effect). Opponents worry about the risk of subtle Unlike palliative sedation, the doctor who coercion and undue infl uence,7 especially in carries out euthanasia will have failed if end-of-life situations, and believe that such the patient survives the procedure. Of note, conversations risk harming the doctor-pa- multiple systematic reviews showed no tient relationship. association between palliative sedation and

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reduced survival.19,20 To the contrary, 12 death.25,26 The doctor’s role in euthanasia of the 13 studies found marginally longer thus brings into sharp relief questions about survival in those sedated. the limits and social context of autonomy. Philosophical discussions regarding Role of law the principle of double effect may The Act as it stands passed royal assent be relevant for end-of-life decisions but are in November 2019. Accordingly, we are beyond the scope of this paper.21,22 also voting on the Act’s details: legal rules, Comparison to abortion technicalities, practical and cultural impli- Despite superfi cial similarities, there are cations. It is also widely accepted that law substantial differences between euthanasia has a pedagogical function and helps shape and abortion, and they should be considered culture as well as reacting to cultural shifts. separately.23 Proponents of euthanasia argue that Similarities: the purpose of law is to protect people’s freedoms, empowering individuals to judge • both require technical expertise to their own quality of life, and to choose when ensure physical, emotional and legal and how to die; others may also benefi t from safety the experience and memory of a loved one’s • both refl ect intimate and personal peaceful death. decisions relevant to bodily and Even though the UK Supreme Court could personal autonomy not justify authorising euthanasia, an unin- • both decisions can be subject to tended consequence was noted by Lord coercion Browne-Wilkinson—“...How can it be lawful Differences: to allow a patient to die slowly, though pain- • Abortion happens far more frequently lessly, over a period of weeks from lack of (one in four women in OECD) food but unlawful to produce his immediate death by a lethal injection, thereby saving • Euthanasia is seen to be a personal his family from yet another ordeal to add to decision, while abortion requires the the tragedy that has already struck them? mother’s decision on behalf of the I fi nd it diffi cult to fi nd a moral answer to fetus that question. But it is undoubtedly the • Euthanasia is the end of the life of law...”.27 Similarly, the US Supreme Court a legal person, whereas abortion also acknowledged that the state’s interest in involves the loss of a fetus that is yet preserving life at all cost may be outweighed to have legal recognition as a person by the liberty interest of those already on The case for autonomy the threshold of death.7,28 The optimisation of individual autonomy On the other hand, opponents argue that via the EoLCA is, for many, an intuitively laws exist to protect society, especially attractive option for medical assistance the most vulnerable. These include those at end of life, and consistent with patient- from disadvantaged ethnic or socioeco- centred care. However, ensuring autonomy nomic groups and those with disabilities. is not always regarded as an absolute They point to legal tradition in Anglophone priority, such as when it may result in countries that has consistently opposed harm to self or others. Restrictions on assisted suicide and sought to ensure equal autonomy include mandatory seat belts, protection for the ‘hopelessly diseased, prohibition against drink driving, and fatally wounded, and even criminals regulations regarding organ donation; these condemned to death’.7 Developments in are deemed appropriate trade-offs in our modern medicine have both complicated current social contract.24 This contract can and drawn attention to issues of dignity and be renegotiated and, indeed, the idea of independence at the end of life. Legislative organ donation euthanasia (where death changes around the world have affi rmed follows removal of the organs under general the right to refuse treatment and enable anaesthetic, with informed consent) is do-not-resuscitate orders and proxy deci- a hypothetical discussed and advocated sion-making, while generally reaffi rming by some as consistent with maximising bans on assisting suicide. autonomy and contributing to a meaningful

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The EoLCA is intended to give the termi- “expand itself to the limit of its logic”.35 nally ill a sense of control and/or to relieve Euthanasia seems to be no exception, intractable suffering, but some argue this with conclusions to this effect from both specifi c Act may not adequately safeguard the US and UK Supreme Courts—that “once against ending vulnerable people’s lives a legislature abandons a categorical prohi- against their wishes. Many reasons patients bition against physician-assisted suicide, seek euthanasia (loss of dignity, suffering, there is no obvious stopping point”.7,27 feeling like a burden) may also make them Like the EoLCA, legalisation in Canada more vulnerable to coercion, highlighting includes no description of euthanasia as the importance of both legal and practical a human right. However, receiving assis- protections. Indeed, despite comments tance for the procedure was interpreted by made by individual judges, the UK and US the Ontario Superior Court as “a constitu- Supreme Courts and others have consis- tionally protected civil and human right”.36 tently ruled that the state’s interest in With this interpretation, it may be diffi cult protecting the vulnerable is suffi ciently to justify denying this right to: weighty to justify prohibitions against • someone with a degenerative physician-assisted suicide.7,27 condition expected to lose autonomy The ‘slippery slope’ is a term that has a before reaching their six-month wide range of interpretations from both prognosis sides of the discussion. This Viewpoint • someone who does not have a focuses on the anticipated expansion of legal terminal condition but experiences eligibility criteria, as distinct from increased intractable suffering numbers approved for euthanasia each year. The latter statistic fails to distinguish • someone with unbearable mental between adoption of a preferable way of instead of physical suffering dying and concerns regarding expansion of • someone who is 17 but deemed eligibility criteria. competent Examples of criteria expansion include: The last point is immediately relevant as • Belgium removing the age limit for the Attorney-General has concluded that the euthanasia,29 and subsequently a nine- EoLCA is inconsistent with the New Zealand 37 year-old with a brain tumour and an Bill of Rights, which protects all those above 11-year-old with cystic fi brosis have the age of 16 from age-based discrimination. been euthanised; This makes it a cogent place for advocates to challenge and expand existing criteria. • Colombia allowing euthanasia for children aged 6+;30 The expansion in eligibility criteria seen overseas is not necessarily a moral fault • Netherlands developing the Gron- but appears likely, as above, based on both ingen Protocol and common law overseas experience and formal judicial precedents for children under one commentary. While some advocates of a year of age;31 “right to euthanasia” praise these expan- • A proposed bill in Canada removing sions as egalitarian, allowing more equitable the requirement that death be access to a valuable end-of-life option, this 32 foreseeable; will concern those advocating strict eligi- • Oregon relaxing the required waiting/ bility criteria and who believe certain groups cooling-off period for those with a should never have access to euthanasia. lesser life expectancy, and a proposed A distinct set of ‘slippery slope’ concerns bill removing the requirement for a relate to existing euthanasia laws, how 33,34 six-month prognosis. strictly they are enforced, and other legal Once euthanasia has been legalised at safeguards designed to protect vulnerable central or federal level, there is at present no patients.38 The Canadian Supreme Court example of a statutory reversal or tightening reviewed these concerns and found that of euthanasia eligibility criteria in any juris- laws governing euthanasia could be effec- diction. US Supreme Court Justice Cardozo tively and rigorously implemented, paving noted the tendency of a legal principle to the way for legalisation in that country.39

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Concerns about coercion However, as was pointed out by the 39 In New Zealand contract law, determi- Canadian Supreme Court, the risks of nation that individual wishes are free from coercion are already present in the existing undue infl uence involves examination of medical system when it comes to refusal or witnesses, arguments by lawyers on both withdrawal of life support, both of which sides, and consideration of legal precedent. remain lawful. Proponents highlight this In the context of existing common law and inconsistency and argue that concerns the EoLCA, this means that: regarding coercion have been overvalued and cannot justify an absolute prohibition of • Similar responsibilities are to be euthanasia. In contrast, opponents point to placed on one individual doctor; an additional reason why withdrawal of life • The doctor does not have access to the support cannot be prohibited, namely that it powers of the court; may result in medication/life support being • The doctor is presumed to hold a forced on unwilling patients. position of power and infl uence over The US Supreme Court goes beyond patients; protecting the vulnerable from coercion • These concern weightier decisions and extends the state’s interest to protecting than those typical of contract law. disabled and terminally ill people from These challenges are further complicated prejudice, negative and inaccurate stereo- in scenarios where the primary doctor types, and “societal indifference”.7 In New conscientiously objects: the replacement Zealand, the absence of demographic data doctor must assume this responsibility required by the EoLCA will make it diffi cult without the long-term relationship and to measure the impact of the Act at a popu- knowledge of the patient and family. The lation level and identify trends, or gaps doctor providing the second independent in access. The EoLCA also has no specifi c opinion also has no obligation to determine provisions to ensure patients receive coercion. Finally, there is no requirement to culturally appropriate care, including ensure lack of undue infl uence at the time kaupapa Māori considerations as mandated of fi nal consent to administration of the by Te Tiriti o Waitangi. lethal dose. Advocates point out that these Mental illness and vulnerability responsibilities would fall within broad Depression is common in patients with professional standards and governance. a terminal illness, with up to 44% fi tting a Concerns have also been raised regarding diagnosis of depressive disorder.41 However, the EoLCA’s regulatory framework. In differentiating depressive disorders from particular, its Review Committee does grief reactions in the setting of a terminal not receive demographic data such as illness can be diffi cult. Undertreatment of age, gender, ethnicity and socioeconomic psychiatric illness is common,41 for example status, or indeed any clinical information up to 80% of cases among cancer patients confi rming eligibility or excluding coercion, remain unrecognised and untreated;42 making it diffi cult to confi rm the statutory cancer constitutes the largest proportion requirement of “satisfactory compliance of New Zealand’s deaths and proportion of with the requirements of this Act”. completed euthanasia overseas.15,43,44 Missed These factors have led some to believe psychiatric diagnoses clearly increase the EoLCA does not do enough to ensure the risk of inappropriate or unnecessary patients are making decisions free from requests for euthanasia. coercion. The High Court of England and The New Zealand government has Wales analysed a comparatively more prioritised reducing suicide rates while stringent safeguard in 2017: that each case provisionally approving assisted suicide would be reviewed by the court to ensure under the EoLCA. While some posit that the absence of coercion. Their conclusion legalising euthanasia may affect suicide (upheld by both the Court of Appeal and rates, this is not strongly supported by the the Supreme Court) was that even such a numbers; a review found no evidence for an process would be considered an inadequate association between suicide rates and legali- safeguard.40 sation of euthanasia in various countries.45

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Cases of people who opponents would • Which doctors can legally discuss consider vulnerable being euthanised are euthanasia with patients (EoLCA well documented in multiple jurisdictions. refers only to the requirement for A Dutch government study revealed that practising certifi cates) in 1990 there were more than 1,000 cases • Specifi c criteria triggering 7 of euthanasia without an explicit request. enforcement of the Act While the situation has apparently • Guidelines regarding conscientious improved, this is still an ongoing practice. objection and prevention of coercion The most recent data available via the Dutch government website showed that in 2015, It remains an open question whether these 431 people were euthanised without explicit issues would be better addressed by modi- request46—around 0.3% of total deaths that fi cation of the Act or by other regulatory year, assuming no underreporting. In 2018, instruments and professional bodies. Either there were 67 reported cases of patients way, one set of useful considerations that receiving euthanasia for psychiatric indica- could be adapted to these purposes have tions. A notable case in 2015 was a victim been formulated by Lord Wilson of the UK of sexual abuse in her 20s diagnosed with Supreme Court, who identifi ed factors to PTSD, anorexia and depression.47 assist determination that a person’s wish to end their life was “voluntary, clear, settled A Belgian study found that only half and informed”.31,52 of cases of euthanasia were reported,30 dropping to one in fi ve in the elderly (80+).48 (https://www.bailii.org/uk/cases/ The commonest reason (77%) was because UKSC/2014/38.html#:~:text=As%20a%20 physicians did not “view their act” as eutha- former%20judge%20of%20the,to%20the%20 nasia, despite the defi nition used in the study judges%20of%20the%20Division) being the same as the legal defi nition used in the Benelux. Another 18% stated that they Conclusion did not report because it was “too much of New Zealand doctors are obliged to an administrative burden”, and 12% because consider their legal and professional obliga- they admitted the “legal due care require- tions to patients in relation to the EoLCA. The ments had possibly not all been met”.48 challenge of managing end-of-life scenarios In 2019, the United Nations Special brings these issues to the fore. Much Rapporteur on the Rights of Persons with evidence points to the emotional intensity Disabilities expressed extreme concern with and potential moral distress associated with Canadian legislation,49 and recommended euthanasia. Proponents argue clinicians “adequate safeguards to ensure that persons can be part of an intimate and rewarding with disabilities do not request assistive process enabling patient autonomy and dying simply because of the absence of helping them achieve a peaceful death. community-based alternatives and palliative In contrast, opponents say euthanasia is care”. Her comments are relevant in light of incompatible with both end-of-life care and the known gaps for access to palliative care medical practice generally. in New Zealand, as well as the expected 50% From a legal perspective, the EoLCA poses increase in deaths in the next 20 years.50 New many challenges and unanswered ques- Zealand is a signatory of the same UN Inter- tions about how to ensure the process is national Human Rights Treaty and expected safe for all involved. Proponents rightly to fulfi l similar obligations.51 While the above point out that many of these questions examples do not necessarily all indicate should be addressed at a professional level abuse or weakness of the law, they illustrate with training programmes, clear guidelines the diffi culty of ensuring safe processes, and and access to adequate support. On the the challenges doctors may face in protecting other hand, opponents point to overseas themselves and their patients. evidence of underreporting and nonvol- Problems in implementation untary euthanasia to illustrate risks of the As noted, there are a variety of matters legislation. that have not been adequately specifi ed in Based on overseas experience, once the Act, including: legalised, euthanasia eligibility criteria will

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be challenged, and are likely to be expanded view this as an unacceptable risk of the over time. Some regard this as an egali- EoLCA. Either way, it is diffi cult to imagine tarian progression towards a better future a more critical referendum for both our that includes a ‘right to die’, while others profession and New Zealand society at large. Appendix Glossary/definition of terms Euthanasia: a catch-all phrase for voluntary euthanasia and physician-assisted suicide (see below), both of which are options under the EoLCA; similar to Canada’s “medical assistance in dying”, commonly abbreviated MAiD. Voluntary euthanasia: administration of a life-ending substance to a consenting patient. Nonvoluntary euthanasia: administration of a life-ending substance to a patient unable to consent (eg, persistent vegetative state). Involuntary euthanasia: administration of a life-ending substance to a patient who is able to consent but did not. Physician-assisted suicide: self-administration of a medically prescribed life-ending substance. Physician-assisted dying: commonly used as an alternative to ‘physician-assisted suicide’, and may (confusingly) include voluntary euthanasia. Assisted dying: commonly used to include both voluntary euthanasia and physician-as- sisted suicide, sometimes used interchangeably with physician-assisted dying. Palliative sedation: administration of sedative medication to relieve refractory symptoms.

Competing interests: Nil. Acknowledgements: We thank Jill Masters, Phillipa Malpas, Richard Monigatti, Cecilia Xu and Lion Yang for com- ments on the manuscript. Author information: Bruce CH Tsai, Final Year Medical Student, University of Auckland, Auckland; David B Menkes, Associate Professor, Waikato Clinical Campus, University of Auckland, Auckland. Corresponding author: Bruce CH Tsai, Peter Rothwell Academic Centre, Waikato Clinical Campus, Private Bag 3200, Hamilton 3240. [email protected] URL: www.nzma.org.nz/journal-articles/new-zealand-doctors-and-euthanasia-legal-and-practical- considerations-of-the-end-of-life-choice-act

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27. Airedale NHS Trust v Bland 36. A.B. v Canada (Attorney Medical Journal. 2000; [1993] UKHL 17 (04 Feb General), 2017 ONSC 76(899):555–558. 1993) [Internet]. Bailii. 3759 (CanLII), , [Internet]. Minhealthnz. 2020]. Available from: retrieved on 2020-07-24 shinyapps.io. 2020 [cited http://www.bailii.org/uk/ 37. Attorney-General, Report 17 September 2020]. cases/UKHL/1993/17.html of the, under the New Available from: http:// 28. Cruzan v Director, Zealand Bill of Rights Act minhealthnz.shinyapps. Missouri Dept. of Health, 1990 on the End of Life io/historical-mortality/ 497 U.S. 261 (1990) Choice Bill, presented to the 44. Annual reports [Internet]. 29. Raus K. The Extension House of Representatives English.euthanasiecom- of Belgium’s Euthanasia pursuant to section 7 of the missie.nl. 2020 [cited 17 Law to Include Compe- New Zealand Bill of Rights September 2020]. Available tent Minors. Journal Act and Standing Order from: http://english. of Bioethical Inquiry. 265 of the Standing Orde euthanasiecommissie.nl/ 2016; 13(2):305–315. - New Zealand Parliament the-committees/documents/ [Internet]. Parliament.nz. 30. [Internet]. Corteconsti- publications/annual-re- 2020 [cited 17 September tucional.gov.co. 2020 ports/2002/annual-reports/ 2020]. Available from: [cited 16 September 2020]. annual-reports http://www.parliament. Available from: http://www. 45. Council of Canadian nz/en/pb/papers-pre- corteconstitucional.gov.co/ Academies, 2018. The sented/current-papers/ relatoria/2017/t-544-17.htm State of Knowledge on document/PAP_74858/ Medical Assistance in Dying 31. Verhagen E, Sauer P. The attorney-general-report-of- Where a Mental Disorder Groningen Protocol — the-under-the-new-zealand Euthanasia in Severely Ill Is the Sole Underlying 38. Carter v Canada (Attorney Newborns. New England Medical Condition. Ottawa General), 2012 BCSC 886. Journal of Medicine. (ON): The Expert Panel Available from: http:// 2005; 352(10):959–962. Working Group on MAID www.canlii.org/en/bc/ Where a Mental Disorder 32. Proposed changes to Cana- bcsc/doc/2012/2012bcsc Is the Sole Underlying da’s medical assistance in 886/2012bcsc886.html Medical Condition. dying legislation [Internet]. 39. Carter v Canada (Attorney Justice.gc.ca. 2020 [cited 46. CBS Statline [Internet]. General), 2015 SCC 5, [2015] 17 September 2020]. Opendata.cbs.nl. 2020 1 S.C.R. 331. Available from: Available from: http://www. [cited 17 September 2020]. http://www.canlii.org/en/ justice.gc.ca/eng/csj-sjc/ Available from: http://open- ca/scc/doc/2015/2015sc- pl/ad-am/index.html data.cbs.nl/statline/#/CBS/ c5/2015scc5.html nl/dataset/81655NED/table 33. Senate Bill 579 [Internet]. 40. Conway R (on the appli- Olis.leg.state.or.us. 2020 47. Oordeel 2015-64, huisarts, cation of) v The Secretary [cited 17 September psychiatrisch, vrijwillig en of State for Justice & Ors 2020]. Available from: weloverwogen verzoek, [2018] EWCA Civ 1431 http://olis.leg.state.or.us/ geen redelijke andere (27 Jun 2018) [Internet]. liz/2019R1/Downloads/ oplossing, uitzichtloos Bailii.org. 2020 [cited MeasureDocument/ en ondraaglijk lijden 15 July 2020]. Available SB579/Enrolled [Internet]. Euthanasie- from: http://www.bailii. commissie.nl. 2020 [cited 34. House Bill 2232 [Internet]. org/ew/cases/EWCA/ 17 September 2020]. Olis.leg.state.or.us. 2020 Civ/2018/1431.html Available from: http://www. [cited 17 September 41. Asghar-Ali A, Wagle K, euthanasiecommissie.nl/ 2020]. Available from: Braun U. Depression in uitspraken-en-uitleg/l/l-20- http://olis.leg.state.or.us/ Terminally Ill Patients: tot-30-jaar/documenten/ liz/2019R1/Downloads/ Dilemmas in Diagnosis and publicaties/oordelen/2015/ MeasureDocument/ Treatment. Journal of Pain psychiatrisch/oordeel-2015-64 HB2232/Introduced and Symptom Manage- 48. Smets T, Bilsen J, Cohen J, 35. Cardozo B. The Nature ment. 2013; 45(5):926–933. Rurup M, Mortier F, Deliens of the Judicial Process. 42. Lloyd-Williams M. Diffi - L. Reporting of euthanasia (Storrs Lectures.). Yale culties in diagnosing and in medical practice in University Press: New treating depression in Flanders, Belgium: cross Haven; Oxford University the terminally ill cancer sectional analysis of Press: London; 1921. patient. Postgraduate reported and unreported

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cases. BMJ. 2010; 341(oct05 50. Review of Adult Palliative international-human-rights/ 2):c5174–c5174. Care Services in New crpd/ 49. OHCHR | End of Mission Zealand [Internet]. Ministry 52. Nicklinson & Anor R (on Statement by the United of Health NZ. 2020 [cited 17 the application of) (Rev 1) Nations Special Rapporteur September 2020]. Available [2014] UKSC 38 (25 June on the rights of persons from: https://www.health. 2014) [Internet]. Bailii. with disabilities, Ms. govt.nz/publication/ org. 2020 [cited 25 July Catalina Devandas-Aguilar, review-adult-palliative- 2020]. Available from: on her visit to Canada care-services-new-zealand http://www.bailii.org/ [Internet]. Ohchr.org. 51. Convention on the Rights uk/cases/UKSC/2014/38. 2020 [cited 17 September of Persons with Disabilities html#:~:text=As%20a%20 2020]. Available from: | New Zealand Ministry former%20judge%20of%20 https://www.ohchr.org/ of Justice [Internet]. the,in%20consequence%20 en/NewsEvents/Pages/ Justice.govt.nz. 2020 of%2C%20the%20 DisplayNews.aspx?News- [cited 17 September 2020]. proposed%20assistance ID=24481&LangID=E#ctl00_ Available from: https:// PlaceHolderMain_ www.justice.govt.nz/ DisplayNewsID_lblNews- justice-sector-policy/consti- FullText:~:text=Right%20 tutional-issues-and-hu- to%20life man-rights/human-rights/

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A model respiratory personal protective programme for the New Zealand healthcare industry Chris Walls, Geraint Emrys, Siobhan Gavaghan, Des Gorman, David McBride, Dave McLean

ABSTRACT In the absence of advice from the workplace regulator, a model respiratory protection programme for healthcare workers is presented based in healthcare and wider industry experience. Hospital and other healthcare institutions can use this as a basis for their programmes in preparation for the next infective disease outbreak.

n the current COVID pandemic, personal and controlling hazards. Hazards can be protective equipment (PPE) has been a assessed against standards, for chemicals in presented as a solution for the respirato- air there are workplace exposure standards I 5 ry protection of healthcare workers (HCWs), (WES’s) which should not be exceeded. In imperfectly applied because of logistics and healthcare there are a number of chemical supply problems. The real problem, howev- exposures including waste anaesthetic gases, er, lies elsewhere, in that PPE is seldom de- cytotoxic agents and electrosurgical smoke, ployed correctly: its is only one component but the principal hazard resides in infec- of a health protection system. tious agents, for which exposure standards Although WorkSafe New Zealand1 recom- have not been set, but the same control prin- mends a respiratory protection programme, ciples apply. no guidance is given on how to design one, With regard to the latter, the Health despite the existence of an Australian/New and Safety (General Risk and Workplace Zealand Standard2 and the development of Management) Regulations 2016 6 draw on specifi c guidelines in Australia.3 We trust a long established and empirically proven that our experiences in applying the basic occupational health and safety principle, principles of respiratory protection in the ‘hierarchy of control’.7 The hazard industrial settings will prove to have direct should be either eliminated, impracticable applicability to the health sector. In the for biological exposures unless a vaccine is absence of advice from the workplace regu- available, or isolated in a suitable facility lator, we offer these thoughts to promote with specially trained staff, for example a better understanding of the problem so that nosocomial or intensive care unit. If the HCWs achieve adequate protection. hazard remains then it must be minimised The statutory duties imposed on a person by, in order of importance, engineering in control of a business unit (PCBU) by the controls, safe work practices, and, failing all Health and Safety at Work Act 2015 4 (The else, by the use of PPE, which attempts to Act) lies at the heart of the problem: they control any residual risk. have a primary duty of care and must, so The implications are that a safe work- far as is reasonably practicable, provide place, particularly in complex industries and maintain a work environment that is such as healthcare, requires a health and without health and safety risks. Under safety system underpinning the optimal the provisions of the Act, work risks are combination of an appropriately engineered to be managed by identifying, assessing work environment, safe work practices, the

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use of the most effective PPE, monitoring of by droplet and contact routes. Although the work environment and fi nally, adequate there have been no reports of the latter the information and training. The effi cacy of WHO advice is that “fomite transmission is such programmes should be subject to considered a likely mode of transmission periodic audit. for SARS-Cov-2 given consistent fi ndings For HCWs in some circumstances, PPE about environmental contamination in the may be the only effective hazard control vicinity of infected cases and the fact that mechanism, blood or body fl uid expo- other coronaviruses and respiratory viruses sures being an example. With airborne can transmit this way”. The WHO therefore hazards, engineering solutions must not recommends droplet and contact precau- be overlooked, and remain a cornerstone tions when caring for COVID 19 patients. of the healthcare risk management model. Airborne precautions are recommended An example is the best practice require- during aerosol generating procedures, the ments for operating theatre ventilation are use of N95, fi ltering face piece (FFP)2 or effective at managing the risks from waste FFP3 respirators. anaesthetic gas and electrosurgical smoke. The situation with respiratory protective Ventilation can help to manage biological equipment, RPE, is therefore complex hazards. As an example, the risk of occupa- and requires thorough analysis and the tional conversion of tuberculosis status is development of an ‘in-depth’ protection much reduced in clinical areas with appro- programme. Experience with viral haem- priate ventilation.8 orrhagic fever has shown that ‘standard precautions’, the suite of infection If ventilation fails to control the hazard, prevention and control measures, must be then respiratory protective equipment (RPE) allied to the use of PPE, and the combination is the fi nal option, simply because it is least treated as an ensemble: training, for example likely to prove effective, largely because of in donning and doffi ng, is crucial to success.13 human behaviour or environmental factors, a seminal example being the use of PPE in Having decided that RPE is necessary to the hot and humid conditions of the freezing reduce residual risk, appropriate equipment works, which has actually been shown to must be selected. Up to now, N95 respirators increase the risk of leptospirosis in meat and surgical masks have been the most workers.9 The associated costs of human widely discussed options. leptospirosis due to time absent from work N95 masks are available in different sizes and treatment have also been calculated to and contours, and designed to fi t closely be $4.42 US million per annum (95% prob- around the nose and mouth. They are elec- ability interval: 2.04–8.62) million).10 The trostatically charged to fi lter out particulate possible costs of SARS-CoV-2 is likely to be matter, but not virus droplets. Half face much greater. respirators with fi lters are also available and Modelling of SARS-CoV-2 virus trans- comply with a standard, having an assigned mission is complex, but a key fi nding of a protective factor (APF) of 10, meaning that study by Jones11 was that droplet, inhalation no more than one-tenth of the contaminants and contact routes contribute respectively to which the worker is exposed leak or pass 14 35%, 57% and 8.2% of the probabability through into the mask. of infection, on average, without the use Surgical masks are loose fi tting, have of PPE. While the virus emission rates no APF and are not considered to be RPE: remain uncertain, Jones concludes “that they cannot be fi t tested.15 Both the N95 inhalation exposure is likely to contribute respirator and surgical mask are useful for meaningfully to the risk of COVID-19 among containing exhaled air, however the surgical HCP providing care to infectious patients, mask does allow more lateral escape.16 The motivating the use of respirators to prevent other options, fi nding more frequent appli- occupationally acquired infection”. cation in the healthcare industry, are the There is advice to the contrary. The fi ltering face piece types, the half face air World Health Organization (WHO)12 notes purifying respirator or the powered air-puri- the complexity of transmission routes, fying respirator, the latter having an APF of SARS-CoV-2 being primarily transmitted up to 1,000 and being used during high-risk aerosol-generating procedures.17

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We advocate an RPE programme, so Having said that, there have been several what should this include? Howie18 sets out trials comparing infection rates in healthcare a number of steps to construct an effective workers using surgical masks and or N95 programme, these being: respirators, but a meta analysis showed 21 • risk assessment no difference, the authors suggesting that compliance with N95 masks may have been • hazard substitution (if practicable) a problem. The effect sizes were also small • technical controls and the samples not large enough to say if • identifi cation of those remaining there was any difference at all. vulnerable The risk does nevertheless need to be • information and informed consent to managed. Modelling data shows that the risk inhalation route of exposure is likely to be • select respiratory protective important, that respirators may be needed, equipment (RPE) adequate to control and that PPE is part of a suite of protective residual risk measures. The implications of the limited fi ltering capacity of the P2 respirators • involve wearers in RPE selection and including the N95 are that a choice of the match RPE to wearer higher grade of disposable respirator, or • fi t testing (to determine the RPE that even the more complex respirators such as gives the maximum protection) the air purifying respirator or the powered • test RPE in use (ie, the wearer can air purifying respirator should be available still achieve the required work task) for high-risk procedures, or failing that, the including compatibility with other higher grade of disposable fi ltering face pieces of ppe or task equipment piece respirator. These have been used (gowns, eye loupes etc) successfully in previous viral epidemics21 • train wearers, supervise in use (eg providing that training is effective. Although donning and doffi ng) available and quite widely used in industry, • minimise wear periods these appear to have had limited availability to HCWs in New Zealand. • maintain and audit RPE Having provided adequate RPE, it must As alluded to above, Howie further qual- be incorporated into a programme, starting ifi es the use of respiratory PPE by pointing with fi t testing. As far as we can determine out that manufacturers stated NPFs are from our own experience and our occupa- many orders of magnitude greater than tional physician colleagues there were no the workplace protection measured in the comprehensive RPE with an adequate “fi t workplace, the assigned protective factor. testing programme” as recommended by The protection offered by RPE, and indeed the New Zealand Australian Standard prior all PPE, degrades when in real use, as shown to the pandemic,2 these programmes should for leptospirosis but also likely to occur have been in place well in advance of any in healthcare—particularly, for example, epidemic, again in our opinion ‘normalised’ when subject to the hurly burly of physically into the healthcare worker induction and intensive work such as might occur during ongoing certifi cation programmes, as resuscitation, high-intensity nursing or some required for cardio pulmonary resuscitation, orthopaedic procedures. and, as with clinical skills, subject to audit. In our experience as occupational health Behavioural measures are also essential. physicians either working in, or offering As the risk of contamination when doffi ng advice to, district health boards, it is our the high-end equipment, or indeed any RPE considered opinion, shared by Agius19 and emphasises the need for training, we would others, that the use of surgical masks has endorse Howie’s18 and the CDC’s22 recommen- little place in a respiratory PPE programme dation of a “change supervisor” (themselves for HCWs. Surgical masks may have some use wearing appropriate PPE) to assist—and in diffusing the exhaled cough jet stream,16 insist on observing the correct technique. that is they are better placed on the patient rather than the staff member, but have no There are some very valuable occupa- place as RPE, as they cannot be fi t tested, a tional health lessons to be learned from view re-iterated by the manufacturer.20 the New Zealand COVID-19 response, the

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emphasis on surgical masks and N95 respi- • training in the correct use and mainte- rators also obscured other hazard control nance of RPE issues. For example facilities should be • ensuring RPE is correctly used, that is designed so that cross contamination is supervision minimised by careful attention to detail, for • fi t testing and fi t checking example sound design of patient fl ow and the provision of negative pressure areas to • inspection, maintenance and repair meet the expected clinical demand. of RPE Work practice controls must be improved • correct storage through attention to information and • keeping records training, the effect of possible failure having • audit been demonstrated in at least one district To be effective, as with all complex health board.23 The evidence supports this: medical procedures, an adequate respi- well equipped and practised high care ratory protection programme requires that units provided better protection for HCWs the HCW is deployed in a safe environment, than found in the less prepared general using appropriate equipment and tech- healthcare and home settings. niques, and has the resources and training Our model of a good respiratory to apply those techniques to their everyday protection programme therefore draws practice. This should be considered as a heavily upon Australian practice, in component of staff welfare, which, in an particular the Queensland Workcover audit of DHB plans, was the most poorly guidance,3 to ensure compliance with the addressed.24 We should also bear in mind relevant standards including: that, in the run up to the Rugby World Cup • correctly selecting appropriate RPE ‘well prepared’ acute care providers were (that is the right type of RPE for the signifi cantly less likely to respond to an identifi ed risk to staff) infectious disease outbreak.25 We need to • medical screening of RPE users give them the confi dence to do so.

Competing interests: Nil. Author information: Chris Walls, Occupational Physician, Counties Manukau Health, Auckland; Geraint Emrys, Occupational Physician, MidCentral District Health Board, Palmerston North; Siobhan Gavaghan, Occupational Physician, Counties Manukau Health, Auckland; Des Gorman, Faculty of Medicine, Auckland University, Auckland; David McBride, Preventive and Social Medicine, University of Otago, Dunedin; Dave McLean, Senior Research Offi cer, Massey University, Centre for Public Health Research, Wellington. Corresponding author: Dr Chris Walls Occupational Physician Counties Manukau Health, Auckland. [email protected] URL: www.nzma.org.nz/journal-articles/a-model-respiratory-personal-protective-programme-for- the-new-zealand-healthcare-industry

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Co-infection of inœ uenza A with Staphylococcus aureus causing bacterial arthritis in a child Yahya Amar Mari, Syed Ahmed Zaki, Ahmed Bashir Yagan

nfl uenza viruses are responsible for an were normal. Rest of the systemic exam- average of 500,000 deaths per year glob- ination was normal. He was admitted with Ially.1 Various factors, including bacterial a provisional diagnosis of viral myositis. co-infection, increase the severity of infl u- His serum creatine phosphokinase was enza infection as observed during previous 4,000U/L (normal 39–308U/L) and nasopha- infl uenza pandemics and seasonal epidem- ryngeal swab was positive for infl uenza A ics.1–3 Several cases of bacterial co-infection virus. Complete blood count and C-reactive with infl uenza resulting in severe pneumo- protein (CRP) were normal. Tests for other nia and sepsis have been reported.4,5 Howev- viruses were negative. He was started er, co-infection leading to bacterial arthritis on intravenous fl uids and paracetamol without overt pulmonary involvement has PRN. We considered persistent fever and not been reported till date. We herein report inability to walk and stand in our patient this rare case of a six-year-old previously as probably due to severe/progressive healthy boy with infl uenza A, who devel- infl uenza and hence started oseltamivir. oped bacterial arthritis after co-infection Calf pain improved over the next two days with Staphylococcus aureus (S. aureus) and with gradual improvement in the mobility. was managed successfully. On third day of admission, the child still had low-grade fever and the next day developed Case report severe pain in the left hip and thigh with inability to walk. Repeat septic workup A six-year-old Arab boy presented with showed increased infl ammatory markers. bilateral lower limbs pain, inability to walk The total leucocyte count was 18,300/cumm, and bear weight on legs. He had fever, CRP was 303.9mg/L(normal- <9) and eryth- cough and runny nose for three days prior rocyte sedimentation rate was 104mm/ to his presentation. Fever was high grade, fi rst hour. His alanine transaminase was intermittent and responded transiently 230U/L [N 0–63] and aspartate transaminase to antipyretics. There was no headache, was 528U/L [N 15–37]. Hence intravenous vomiting, diarrhoea, recent intramus- amoxicillin-clavulanate was started empiri- cular injection or any history of trauma. cally. Ibuprofen was started round the clock There was no history of past or current for the pain and infl ammation. Ultrasound skin disease. His past and developmental of the left hip showed synovial thickening history were normal. His routine childhood of left hip joint with effusion. Arthrotomy immunizsations were up-to-date, however was done and the joint was drained. The he had never received infl uenza vaccine. synovial fl uid culture and the blood culture On examination he was conscious, alert grew S. aureus and intravenous fl uclox- with temperature of 39.2 celcius, heart acillin was started as per the sensitivity rate of 122/min, respiratory rate of 24/min pattern for the treatment of septic arthritis. and blood pressure of 104/64mmHg. There Nasopharyngeal swab culture grew S. was nasopharyngeal congestion. The child aureus. The S. aureus isolated from the was unable to walk but could stand with blood culture, synovial fl uid and the naso- support. Tone was normal in all four limbs pharyngeal swab had the same antibiogram. with normal superfi cial and deep refl exes. Flucloxacillin was given intravenously for There was marked bilateral calf tenderness. 21 days followed by oral for seven days after His spine and cranial nerve examination discharge. Physiotherapy was started after

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Figure 1: MRI of the left hip joint showing features suggestive of bacterial arthritis with enhancing areas suggestive of osteomyelitis in the acetabulum and left proximal femur and in the periarticular soft tissues. Also seen is peripheral enhancing collection in the joint extending into left gluteus medius muscle.

the pain subsided and gradual improvement individuals. This increases to at least noted in movement of the left lower limb. 2.5% in people with predisposing condi- Magnetic resonance imaging showed tions like extremes of age [>65 years or <5 features consistent with bacterial arthritis years] and those with pre-existing chronic with enhancing foci in the acetabulum and medical conditions or immunosuppressive proximal femur suggestive of osteomyelitis conditions.5,6 Pathogens that colonise the (Figure 1). nasopharynx, including S. aureus, S. pneu- Repeat infl ammatory markers, liver moniae, and S. pyogenes, are the most 1,3,4,6 function tests and blood cultures were commonly isolated bacteria. In the negative at the end of the treatment. The presence of infl uenza infection, these oppor- power and function of the lower limbs were tunist pathogens can cause bacteremia and normal and there were no sequalae on severe infection. In a systematic review follow-up after six months. and meta-analysis of 27 studies done by Klien et al on the frequency of infl uenza and bacterial co-infection, S. pneumoniae Discussion (35%) and S. aureus (28%) were the most Early diagnosis and prompt antibiotic common co-infecting bacteria.3 the naso- treatment were crucial in the complete pharyngeal swab culture, synovial fl uid and recovery of the child. In contrast to other blood culture of our patient grew S. aureus published studies, our case was unique as with the same antibiogram. Williams et the co-infection lead to bacterial arthritis al in their study found that children with without acute lung injury. Bacterial co-in- infl uenza having bacterial co-infection fection complicates approximately 0.5% of had an increased likelihood of requiring all infl uenza cases in previously healthy intensive care unit admission, a longer

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Table 1: Factors contributing to the increased severity of infl uenza illness during bacterial co-infection.

Viral factors PB1-F2 – increases susceptibility to bacterial infection

Bacterial Staphylococcus aureus: produces proteases which cleave hemagglutinin, thus factors producing fusion-competent virus particles with enhanced infectivity

Mechanical Epithelial injury factors (host) Impaired mucociliary velocity

Immune cells Impaired neutrophil function and recruitment (host) Increased neutrophil apoptosis

Macrophages and monocytes—reduced phagocytic capacity

Cytokines/ IFN-γ & IFN-α/β chemokines 1. Decrease the production CCL2, which is required for macrophage recruitment (host) Keratinocyte derived chemokine [KC] & Macrophage inflammatory protein 2 [MIP-2] – Downregulation of KC and MIP-2 leading to inhibition of migration of neutrophils.

Pattern MARCO [macrophage receptor with collagenous structure]—downregulation of recognition MARCO leading to reduced phagocytic activity of macrophages and monocytes. receptors (host)

hospital stay and a trend towards higher symptom overlap of infl uenza and bacterial mortality.7 This occurs due to the epithelial infections. As per the updated 2018 clinical cell damage and increased receptor avail- practice guidelines by the infectious disease ability during infl uenza infection, which society of America (IDSA), clinicians should enables the invading bacteria to adhere and investigate and empirically treat bacterial grow.1,3,8 Table 1 summarises the factors co-infection in patients with suspected or which lead to increased severity of illness laboratory-confi rmed infl uenza who present during co-infection.1,3,8 initially with severe disease (extensive pneu- Co-infection predominantly occurs during monia, respiratory failure, hypotension, 10 periods of high infl uenza viral shedding sepsis and fever). Bacterial co-infection and maximum tissue damage (ie, 3–7 days should also be considered in patients who after infl uenza infection), but may occur deteriorate after initial improvement on concurrently with or shortly after infl uenza antivirals and/or fail to improve after 3–5 10 infection.1,3 Non-steroidal anti-infl ammatory days of antiviral treatment. In a study done drugs [NSAID] like ibuprofen, aspirin have by Zhihao et al, signifi cantly higher procal- strong anti-infl ammatory effects. They can citonin and CRP levels were detected in modify the signs and symptoms leading to the bacterial co-infection group than in the 11 delayed diagnosis and management. Factor infl uenza infection-alone group. Thus the et al also found NSAID as a risk factor for combination of these markers could assist invasive Group A Streptococcal infection.9 in identifying bacterial co-infection during We had managed our patient initially with the early disease phase, although clinical paracetamol PRN, which has mild anti-in- judgement is also indicated. As per IDSA, fl ammatory action. Hence the possibility of the empiric antibiotic treatment for any NSAID modifying the course of the disease suspected bacterial co-infection in infl uenza doesn’t arise in our case. patients should cover the most common isolated bacteria, ie, S. aureus, S. pyogenes The management of bacterial co-infection and S. pneumoniae.9 Coverage for addi- includes prevention, early diagnosis and tional pathogens may be necessary based appropriate treatment of both infl uenza upon the child’s age, particular clinical and bacterial infection. However, clinically, circumstances, site of infection, gram stain it can be sometimes diffi cult to identify and the local antibiotic resistance pattern. bacterial co-infection, given the substantial

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Cultures should be taken before starting bacterial co-infection.6 Infl uenza vaccination antibiotics empirically in infl uenza cases can have substantial epidemiological impact with suspected bacterial co-infection. The even when vaccine effi cacy is low. As per antimicrobial regimen can later be de-esca- Sah et al, the mortality and overall health lated as necessary or tailored to a specifi c burden due to infl uenza infection is more pathogen based on microbiological results. sensitive to changes to vaccination coverage This will avoid patient exposure to the risks than to changes in vaccine effi cacy.15 Thus of prolonged unnecessary antibiotic use. reduced motivation to vaccinate could Human data are limited regarding the present a greater danger than low vaccine effectiveness of oseltamivir treatment in effi cacy itself. preventing serious infl uenza -related compli- cations (eg, bacterial or viral pneumonia or Conclusion 12 exacerbation of chronic diseases). Thus the Infl uenza and bacterial co-infections best way currently to prevent serious co-in- can cause severe illness with increased fections is to prevent the antecedent viral morbidity and mortality. Physicians should infection entirely. Studies have shown up to maintain increased vigilance in infl uenza a 45% reduction in pneumonia hospitalisa- for early detection and investigation for risk tions and mortality rates following infl uenza of serious secondary bacterial infection. 13,14 vaccination. Thus annual infl uenza Annual infl uenza vaccination for >6 months immunisation for >6 months of age remains remains the best way to prevent infection an important tool for prevention of severe and reduce seriousness of illness even if one infl uenza illness commonly associated with gets infected.

Competing interests: Nil. Acknowledgements: We would like to acknowledge Dr Asim (Consultant Infectious Diseases), Dr Abdul Latif (Vascular Surgeon) and Physiotherapy Department for helping and giving their valuable inputs in the management of the case. We would like to thank our Head of Department and Medical Director for giving us permission to publish the manuscript. Author information: Yahya Amar Mari, Consultant General Pediatrics, Department of Paediatrics, NMC Royal Hospital, Abu Dhabi; Syed Ahmed Zaki, Specialist Pediatrician, Department of Paediatrics, NMC Royal Hospital, Abu Dhabi; Ahmed Bashir Yagan, Syrian Board (Orthopaedics), Specialist Orthopaedic Surgeon, Department of Orthopaedics, NMC Royal Hospital, Abu Dhabi. Corresponding author: Dr Syed Ahmed Zaki, Specialist Pediatrician, NMC Royal Hospital, Abu Dhabi, UAE. [email protected] URL: www.nzma.org.nz/journal-articles/co-infection-of-infl uenza-a-with-staphylococcus-aureus- causing-bacterial-arthritis-in-a-child

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REFERENCES: 1. Jia L, Xie J, Zhao J, Cao D, Babinchak T. Epidemi- on Diagnosis, Treatment, Liang Y, Hou X, Wang L, Li ology, microbiology, Chemoprophylaxis, and Z. Mechanisms of Severe and treatment consid- Institutional Outbreak Mortality-Associated erations for bacterial Management of Seasonal Bacterial Co-infections pneumonia complicating Infl uenza. Clin Infect Following Infl uenza Virus infl uenza. Int J Infect Dis Dis 2019; 68:e1–e47. Infection. Front Cell Infect 2012; 16:e321- e331. 11. Li Z, He L, Li S, He W, Zha C, Microbiol 2017; 7:338. 6. Chertow DS, Memoli MJ. Ou W, et al. Combination of 2. Guarner J, Paddock CD, Bacterial coinfection procalcitonin and C-reac- Shieh WJ, Packard MM, in infl uenza: a grand tive protein levels in the Patel M, Montague JL, et al. rounds review. JAMA early diagnosis of bacterial Histopathologic and immu- 2013; 309:275–82. co-infections in children nohistochemical features 7. Williams DJ, Hall M, Brogan with H1N1 infl uenza. of fatal infl uenza virus TV, Farris RW, Myers Infl uenza Other Respir infection in children during AL, Newland JG, et al. Viruses 2019; 13:184–190. the 2003–2004 season. Clin Infl uenza coinfection and 12. McCullers JA. Preventing Infect Dis 2006; 43:132–40. outcomes in children with and treating secondary 3. Klein EY, Monteforte B, complicated pneumonia. bacterial infections with Gupta A, Jiang W, May L, Arch Pediatr Adolesc antiviral agents. Antivir Hsieh YH, Dugas A. The Med 2011; 165:506–12. Ther 2011; 16:123–35. frequency of infl uenza 8. van der Sluijs KF, van 13. Jefferson T, Rivetti D, Rivetti and bacterial coinfection: der Poll T, Lutter R, A, Rudin M, Di Pietrantonj a systematic review and Juffermans NP, Schultz MJ. C, Demicheli V. Effi cacy and meta-analysis. Infl uenza Bench-to-bedside review: effectiveness of infl uenza Other Respir Viruses bacterial pneumonia with vaccines in elderly people: 2016; 10:394–403. infl uenza - pathogenesis a systematic review. Lancet 4. Randolph AG, Vaughn F, and clinical implications. 2005; 366:1165–1174. Sullivan R, Rubinson L, Crit Care 2010; 14:219. 14. Nichol KL, Nordin JD, Thompson BT, Yoon G, et al 9. Factor SH, Levine OS, Nelson DB, Mullooly Pediatric Acute Lung Injury Harrison LH, Farley MM, JP, Hak E. Effectiveness and Sepsis Investigator’s McGeer A, Skoff T, et al. of infl uenza vaccine in Network and the National Risk factors for pediatric the communitydwelling Heart, Lung, and Blood invasive group A strep- elderly. N Engl J Med Institute ARDS Clinical tococcal disease. Emerg 2007; 357:1373–1381. Trials Network. Critically ill Infect Dis 2005; 11:1062–6. 15. Sah P, Medlock J, Fitz- children during the 2009– 10. Uyeki TM, Bernstein HH, patrick MC, Singer BH, 2010 infl uenza pandemic in Bradley JS, Englund JA, File Galvani AP. Optimizing the United States. Pediatrics TM, Fry AM, et al. Clinical the impact of low-effi cacy 2011; 128:e1450-8. Practice Guidelines by the infl uenza vaccines. Proc 5. Metersky ML, Masterton Infectious Diseases Society Natl Acad Sci U S A. 2018 RG, Lode H, File TM Jr, of America: 2018 Update 15; 115:5151–5156.

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Unilateral pulmonary opacity with herniation of contralateral lung to same side Prem Parkash Gupta, Dipti Agarwal, Chandra Kumar, Saumya Gupta

19-year-girl was referred to our Question: what is the diagnosis? Institute from a primary healthcare She underwent detailed contrast enhanced A for lower respiratory symptoms. computed tomography study of thorax She gave history of recurrent respiratory (Figure 2). There was no left bronchial tree symptoms since early childhood. Her chest or left pulmonary vasculature. radiograph showed left hemithorax having (In all scans, symmetry of thoracic cage large opacity, mediastinal structures shifted is maintained despite of major anatomical to left, and right lung crossing the midline changes in thoracic organs suggesting a to left (Figure 1). Her sputum samples were congenital etiology). submitted for microbiological examination and she was started with empirical antibi- Bronchoscopic examination revealed otics. Her cough and sputum subsided after absence of origin of left main bronchus, antibiotics. trachea being followed by dilated right main

Figure 1: Chest radiograph, posterio-anterior view, showing left hemithorax having large almost uniform opacity, trachea and mediastinal structures shifted to left and right lung crossing the midline to left (arrow heads).

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Figure 2: Chest CT scan: (Figure 2A & B) axial scans showing mediastinum grossly displaced to left, right lung crossing the midline to left. There is no associated thoracic cage volume loss over left side (that is seen in acquired pathology) suggestive of congenital disorder. (Figure 2C & D) axial scans, trachea being continued to right main bronchus only, not even rudimentary left main bronchus seen. (Figure 2C to 2E) right pulmonary vasculature enlarged due to the absence of left pulmonary vasculature, entire pul- monary blood being channeled through right. (Figure 2E & F) heart is shifted near left posterior thorax. (Figure 2G & H) axial scans showing details of cardiac chambers fully displaced to posterior thoracic space, descending aorta displaced to left. Bifurcation of trachea to right upper lobe and right interme- diate bronchus is seen. (Figure 2H) axial scan with right pulmonary artery elongated due to displaced heart to further left.

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Figure 3: Images captured during fi bre-optic bronchoscopy, seen from head end; (3A to 3C) trachea is continuing to right main bronchus, no evidence of any left main bronchus—not even rudimentary one—seen. (3D) Bronchoscope in right intermediate bronchus, bronchial openings of right lower lobe, right middle lobe and superior segment of right lower lobe seen.

bronchus and all airways on right side were congenital conditions to infl ammatory, grossly altered in size and position (Figure infective and malignant conditions (Table 1). 3, images obtained during bronchoscopy; Complete atelectasis secondary to main and Appendix Video 1, Video clip obtained bronchial obstruction is most often due during bronchoscopy). Airways were full of to a central mass, but occasionally may secretions; bronchial aspirate was submitted result from other causes like foreign bodies, for microbiological culture that confi rmed mucus plugs, endobronchial tuberculosis streptococcus pneumoniae; that matched or external compression due to lymhnodes, with sputum culture submitted earlier. tumors or aortic aneursm. Traumatic bron- Diagnosis chial rupture is always having history of Based on the features described here, a blunt trauma; rib fractures are usually asso- diagnosis of left pulmonary agenesis with ciated with bronchial rupture in patients superadded infection of remaining right lung over age 30. Pneumonectomy can be easily was made. be detected due to a history of prior thoracic surgery, presence of post-operative skin scar Discussion and a radiological appearance of asymmet- rical thoracic cage. In pulmonary agenesis, Unilateral whole lung opacity is frequently thoracic cage usually appears symmetric, encountered in clinical practice that although the trachea and mediastinum are requires careful consideration of available deviated to the affected side. clues, including position of trachea, thoracic Pulmonary agenesis is a rare congenital cage symmetry and telltale signs of thoracic disorder characterised by complete trauma or surgery. Differential diagnosis absence of bronchus, lung parenchyma and of unilateral lung opacity extends from

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Table 1: Lung diseases and disorders with a radiological appearance of opaque hemithorax.

Position of trachea Possible underlying etiology Pushed Large pleural e‘ usion (most frequent) (shiª ed to contralateral side) Large intrathoracic thoracic mass

Pulled Pulmonary agenesis (shiª ed to ipsilateral side) Complete atelectasis [Foreign body (in children), endobronchial tumor (in adults), malpositioned endotrachial intubation, external compression, traumatic bronchial rupture] Pneumonectomy

No change Adults—bronchial carcinoma, accompanied by pleural e‘ usion and (central) atelectasis Children—extensive pneumonia Pleural mass

pulmonary vasculature; the prevalence Pulmonary agenesis may be overlooked being around 34 per million live births.1 as a collapse or pleural effusion by primary Pulmonary agenesis co-exists with other care physicians. Pulmonary agenesis and systemic anomalies including cardiovas- aplasia are to be identifi ed as the later is cular, gastrointestinal, musculoskeletal characterised by the presence of a rudi- or urogenital system in over half of the mentary bronchus. Further, both of them patients.2 It is often diagnosed during differ from pulmonary hypoplasia having no childhood; half of those with unilateral lung immature pulmonary tissues seen in later agenesis die before the age of fi ve years. disorder. Diagnosis of pulmonary agenesis Congenital heart diseases are seen in nearly can be secured by demonstrating absence one-third of patients. Left lung agenesis is of even rudimentary bronchus, lung paren- comparatively having a longer life expec- chyma and any pulmonary vasculature tancy.2 First expression in adult life is still using radiological imaging like contrast-en- rarer. The natural course of pulmonary hanced CT, pulmonary angiography or agenesis is highly variable being dependent magnetic resonance imaging and carrying on associated congenital malformations and out bronchoscopy.3 development of complications. Patients may Asymptomatic pulmonary agenesis cases remain asymptomatic till early adulthood or require no treatment apart from treatment present with respiratory insuffi ciency since of chest infections.3 Long-term prognosis birth. Isolated unilateral lung agenesis may, is highly variable being dependent on the 2 however, be compatible with a normal life. presence of co-existing congenital anomalies Contralateral normal lung involvement by and involvement of the remaining single infection or atelectasis often leads to respi- lung in disease process. ratory distress.

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Appendix

Appendix Video 1: Video clip obtained during bronchoscopy. No evidence of any left main bronchus seen. Bronchoscope is moving from trachea to right main bronchus, opening of right upper lobe bron- chus seen at 1 o’ clock position and then continuing to right intermediate bronchus, bronchial openings of right lower lobe, right middle lobe and superior segment of right lower lobe seen.

Competing interests: Nil. Acknowledgements: The authors are thankful to the patient for readily providing consent for using her clinical data for publication. Author information: Prem Parkash Gupta, Professor of Respiratory Medicine, Postgraduate Institute of Medical Sciences, Rohtak, India; Dipti Agarwal, Professor of Physiology, Postgraduate Institute of Medical Sciences, Rohtak, India; Chandra Kumar, Resident, Respiratory Medicine, Postgraduate Institute of Medical Sciences, Rohtak, India; Saumya Gupta, Medical Student, Kasturba Medical College, Manipal, Karnataka, India. Corresponding author: Professor Prem Parkash Gupta, Department of Respiratory Medicine, Postgraduate Institute of Medical Sciences, Rohtak, PIN 124001, India. [email protected] URL: www.nzma.org.nz/journal-articles/unilateral-pulmonary-opacity-with-herniation-of- contralateral-lung-to-same-side

REFERENCES: 1. Roy PP, Datta S, 2. Yetim TD, Bayarogullari 3. Vyas S, Mathew T, Advani Sarkar A, Das A, et al. H, Yalcin HP, Arica V, et al. M, Meena D. Pulmonary Unilateral pulmonary Congenital agenesis of the agenesis: A rare entity. agenesis presenting in left lung: a rare case. J Clin Lung India 2018; 35:275–76. adulthood. Respir Med Imaging Sci 2011; 1:47. Case Rep 2012; 5:81–3.

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Health effects of œ uoridation on IQ are unproven Ken W Perrott

ruce Spittle recommends1 a new But this was not statistically signifi cant review of health effects of communi- when confounders were included or when Bty water fl uoridation (CWF) because outliers removed. Till et al used several of new fi ndings published in three recent different cognitive measures including papers. Two of these use data from Canada performance (PIQ) and verbal (VIQ), which where CWF is used and are more relevant are subtests of full-scale IQ (FSIQ). There than the studies from areas of endemic fl uo- was a statistically signifi cant relationship rosis previously used to argue against CWF. for PIQ, but not VIQ or FSIQ. The use of such However, these new studies have problems subtests is questionable7 but seems to have and a critical review of them is necessary. led to some confusion. Spittle ignores the fi nding of the two The studies Spittle refers to are explor- Canadian studies2–3 that fl uoridation has no atory, using existing data bases rather than effect on child IQ, confi rming the results experiments specifi cally designed to answer reported by Broadbent et al4 for New the relevant questions. Reported relation- Zealand. All three of these studies reported ships may support preconceived beliefs but differences of less than two IQ points in it is easy to ignore important confounders both directions. This lack of difference was or risk-modifying factors. For example, the not discussed by the Canadian authors but positive relationship of ADHD prevalence has been discussed in critiques of one of with the extent of fl uoridation in the US these studies.5 reported by Malin and Till8 disappeared 9 Despite this, some commentators use when geographic factors were included. the new studies as evidence of harm from R-squared values indicate that the rela- CWF because they report negative relation- tionships reported in the studies Spittle ships between child IQ, or other cognitive mentions explain only a few percent of measures, with indicators of fl uoride the variance of cognitive measures. The exposure such as urinary fl uoride, drinking standard errors of all the regressions water fl uoride and estimated fl uoride are large compared with the coeffi cients dietary intake. The reported relations are determined for the relationships. Where in all cases weak, explaining little of the fi gures illustrating these relationships are variance of cognitive facts, and often not published, they show a higher degree of statistically signifi cant. Attempts to consider scattering of data points. the infl uence of confounders or other risk Multiple measures for both cognitive 5–6 modifying factors are limited. There are factors and of fl uoride exposure are used also methodological weaknesses related producing many relationships. Only four to limitations in measurement of fl uoride of the 10 relationships reported by Green exposure and the suitability of the cognitive et al were statistically signifi cant (p<0.5). 5–6 measures used for young children. Similarly, only three of the 12 relation- Spittle1 confuses the results reported by ships reported by Till et al were statistically Till et al,2 related to breastfed and formu- signifi cant. There is a danger that reported la-fed babies with those of Green et al,3 relationships could be misleading—as the which compared prenatal maternal urinary proverb says, “If you torture your data long fl uoride with child IQ. He claims a decrease enough, they will tell you whatever you in the 8.8 IQ points in the children who want to hear”.10 have been formula-fed for every 1mg/L Any new review of health risks of CWF increase in water fl uoride concentration. would have to include consideration of all

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relevant recent studies as well as those non-signifi cant when only data for fl uoride selected by Spittle. For example, a Swedish exposures relevant to CWF are statistically study11 found that low fl uoride exposure analysed. It is not unusual for benefi cial similar to levels found with CWF had no micro elements to have toxic effects at effect on people’s IQ and a Spanish study12 excessive concentrations and health using mother child pairs similar to that problems in areas of endemic fl uorosis are of Green et al found a positive effect of well known. prenatal maternal fl uoride on child IQ. The few studies mentioned by Spittle have Finally, extrapolating from data in studies the advantage of using fl uoride exposures from areas of endemic fl uorosis as Spittle relevant to CWF, but they have serious weak- does to estimate a possible benchmark nesses. There are also other relevant studies threshold dose for the effect of fl uoride he does not mention and there well no doubt exposure on child IQ can be misleading. be more in future. A new review concen- Those relationships refer to situations which trating on only the few studies like those he include excessively large fl uoride exposures, has selected would be inappropriate. but the same relationships often prove to be

Competing interests: Nil. Author information: Ken Perrott, Independent Researcher, Hamilton. Corresponding author: Dr Ken Perrott, 61A Flynn Road, Hamilton 3216. [email protected] URL: www.nzma.org.nz/journal-articles/health-effects-of-fl uoridation-on-iq-are-unproven

REFERENCES: 1. Spittle, B. Health effects on 3. Broadbent JM, Thomson Thomas H, et al. Toxic- IQ of fl uoride. NZ Med. J. WM, Ramrakha S, et al. ity of fl uoride: critical 2020; 113:126–127.Till C, Community water fl uori- evaluation of evidence Green R, Flora D, Hornung dation and intelligence: for human developmental R, Martinez-mier EA, Prospective study in New neurotoxicity in epidemi- Blazer M, Lanphear B, et Zealand. Am J Public ological studies, animal al. Fluoride exposure from Health. 2015; 105:72–6. experiments and in vitro infant formula and child IQ 4. Science Media Centre analyses. Archives of Toxi- in a Canadian birth cohort. UK. Expert reaction to cology. 2020; 94:1375–1415. Environment International. study looking at maternal 6. Canivez GL. (2012) Review 2020; 134(September exposure to fl uoride and of the Wechsler Adult Intel- 2019):105315. IQ in children. http://www. ligence Test–Fourth Edition. 2. Green R, Lanphear B, sciencemediacentre.org/ In TEST REVIEWS, Wechsler Hornung R, et al. Associ- expert-reaction-to-study- Preschool and Primary ation Between Maternal looking-at-maternal-ex- Scale of Intelligence. Fluoride Exposure posure-to-fl uoride-and- Buros Center for Testing. During Pregnancy and iq-in-children/ 2019. 7. Malin AJ, Till C. Exposure IQ Scores in Offspring in 5. Guth S, Hüser S, Roth A, to fl uoridated water Canada. JAMA Pediatr. Degen G, Diel P, Edlund K, and attention defi cit 2019; 173(10):940–8.

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hyperactivity disorder 9. Mills JL. Data Tortur- nuevo A, Lopez-Espinosa prevalence among children ing. New England M, Villanueva C, Riano I, and adolescents in the Journal of Medicine, 1993; Ibarluzea J, et al. Fluori- United States: an ecological 329(16):1196–1199. nated water consumption association. Environmental 10. Aggeborn L, Öhman in pregnancy and neuro- Health. 2015; 14(1):17. M. 2016. The Effects of psychological development 8. Perrott KW. Fluoridation Fluoride in the Drinking of children at 14 months and attention defi cit hyper- Water. http://hdl.handle. and 4 years of age. activity disorder a critique net/10419/201430 Environmental Epidemi- ology. 2019; 3:386–387. of Malin and Till (2015). 11. Santa-Marina L, British Dental Journal. Jimenez-Zabala A, Moli- 2018; 223(11):819–822.

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The association between New Zealand adolescents’ normative perceptions of pornography use and their frequency of pornography use Damian Scarf, Benjamin C Riordan, Taylor Winter

f a parent were to type “New Zealand argue lifetime exposure to pornography in teens and porn” into Google, rather than adolescents is high, the number of adoles- Ibeing presented with news and informa- cents that frequently view pornography tion about pornography use by New Zea- is relatively small. Indeed, even if we land adolescents, they would see a series of factored in some level of underreporting links to websites such as pornhub, xvideos, of frequency due to social desirability bias, and redtube. That is, they will be directed viewing rates would still be relatively low. to pornography websites that purportedly Based on the Classifi cation Offi ce report contain videos of New Zealand adolescents and data from the Youth2000 Survey Series,5 having sexual intercourse. To provide New Taylor recently called attention to the Zealand parents with a less treacherous potential disconnect between 1) popular pathway to information about pornography narratives on the prevalence of pornography use in adolescents, the New Zealand Gov- use in adolescents and 2) the quantitative ernment recently launched their “Keep It data suggesting the number of adolescents 1 Real Online” website. The website provides, that frequently view pornography is rela- among other things, information on how to tively low. Beyond merely misrepresenting talk to adolescents about pornography and New Zealand adolescents’ pornography use, a link to the Offi ce of Film and Literature Taylor recently noted that “…it is somewhat Classifi cation (Classifi cation Offi ce) research ironic that the concern about an epidemic of report on pornography use by New Zealand pornography viewing may itself be perpetu- 2 adolescents. ating normative pressures for young people The Classifi cation Offi ce report represents to watch pornography” (p. 17).6 one of the few sources of information on Here we use data from the Classifi cation pornography use by New Zealand adoles- Offi ce report to test the association between cents. They recruited an online, nationally normative perceptions of pornography use representative, sample of 2,071 adolescents and the frequency of pornography use. between the ages of 14 and 17. Consistent Normative perceptions was measured by with research conducted in Australia, 66% asking adolescents how common adolescents (n=1,369) of New Zealand adolescents had thought it was for boys and girls their age to seen pornography, with 37% (n=771) viewing look at porn, with responses options ranging 2–4 it in the past six months. With respect to from not common (1) to very common (3). frequency, 55% (n=425) had viewed pornog- Frequency of use was captured by a single raphy a few times or less. At the other end question asking how often adolescents of the spectrum, 5% (n=41) had viewed it had seen porn in the last six months, with daily or almost daily, and just 1% (n=10) response options ranging from not at all (0) had viewed it more than once a day. When to more than once a day (6). A complete list broken down in this way, while one could of variables is available online.2

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Table 1: Hurdle models predicting the perceived frequency of pornography use.

Predictors Incident rate ratio Confidence interval p Intercept 1.25 0.92–1.70 .148

Gender 0.90 0.77–1.05 .170

Age 1.00 0.95–1.06 .856

Norms 1.27 1.15–1.41 <.001

Zero inflated model Intercept 0.24 0.13–0.43 <.001

Gender 0.87 0.65–1.17 .350

Age 1.01 0.90–1.13 .854

Norms 2.46 2.01–3.02 <.001

Given the high number of adolescents that The fi ndings of the current study have had not watched pornography in the past important implications for campaigns that six months (n=555), we employed hurdle aim to address pornography use in New models. Supporting Taylor’s assertion,6 those Zealand adolescents.1 Indeed, given the risk who reported higher normative percep- of iatrogenic effects,7 education campaigns tions of pornography use reported watching should provide accurate information on the pornography more often (Incident Rate frequency of pornography use. Providing Ratio = 1.27; 95% CI = [1.15–1.41]) and were accurate information will help to curtail the more likely to report any pornography use normative pressures that may, unwittingly, (Odds ratio = 2.46; CI = [2.01–3.02]). That increase pornography use in New Zealand is, for every 1-point increase in normative adolescents. perception, the odds of viewing pornog- raphy increases 2.46 times.

Competing interests: Nil. Author information: Damian Scarf, Department of Psychology, University of Otago, Dunedin; Benjamin Riordan, Centre for Alcohol Policy Research, La Trobe University, Melbourne; Taylor Winter, Department of Psychology, Victoria University of Wellington, Wellington. Corresponding author: Dr Damian Scarf, Department of Psychology, University of Otago, PO Box 56, Dunedin 9054. [email protected] URL: www.nzma.org.nz/journal-articles/the-association-between-new-zealand-adolescents- normative-perceptions-of-pornography-use-and-their-frequency-of-pornography-use

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REFERENCES: 1. Keep It Real Online, (2020). risk behaviours. Aust NZ J to be inaccessible’: 2. NZ Youth and Porn. Publ Heal 2017; 41:438–443, pornography viewers’ (Offi ce of Film and doi:10.1111/1753-6405.12678. reconciliation between Literature Classifi cation, 5. Clark TC, Moselen E, Dixon early pornographic Wellington, NZ, 2018). R. Sexual and Reproductive memories and pornogra- phy’s perceived risk. Porn 3. Henry C, Talbot H. The Health & Sexual Violence Stud, 2020:1–19, doi:10.108 complexities of young among New Zealand 0/23268743.2020.1736609. New Zealanders’ use and secondary school students: perceptions of pornogra- Findings from the Youth’12 7. Lilienfeld SO. Psychological phy: a quantitative survey national youth health and treatments that cause in context. Porn Stud 2019; wellbeing survey. (The harm. Perspect Psychol Sci 6:391–410, doi:10.1080/2 University of Auckland, 2007; 2:53–70, doi:10.1111/ 3268743.2019.1656544. Auckland, New Zealand, j.1745-6916.2007.00029.x. 2015). 4. Lim MS, Agius PA, Carrotte ER, et al. Young Australians’

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High time to decide David B Menkes, Nicholas Hoeh

he October 2020 ‘reeferendum’ will de- constituent, cannabidiol (CBD), may mitigate termine the legal status of recreational the psychotogenicity of THC,6 but the Tcannabis in New Zealand (http://www. notion that suffi ciently high levels of the referendums.govt.nz/cannabis/summary. former relative to the latter could be legally html). Amidst the many arguments for and mandated must be regarded as little more against, a key issue has yet to receive ade- than a pipe dream.7 quate debate and critical scrutiny. Canna- If recreational cannabis were to be bis-induced psychosis warrants concern legalised in New Zealand, based on overseas because of the profound and sometimes experience we can expect rapid commer- irreversible social and occupational disability cialisation, increased use in the adult and that can result. Epidemiological data from adolescent populations, followed by an 1 2,3 New Zealand and elsewhere strongly elevated incidence of psychosis.3 A proper implicate a causal role for tetrahydrocan- health-economic study will be required to nabinol (THC) in schizophrenia. Additional reckon the consequent social and economic concern arises from the impacts of regular costs and, ideally, to counterbalance these cannabis use on a critical period of brain against anticipated gains from legalisation maturation during adolescence up to the age on reduced gang activity, prosecution and 4 of 25 or so. incarceration.8 On the other hand, there is These problems are exacerbated by evidence that decriminalisation9 offers a commercial pressure, regardless of useful compromise between the extremes of legal status, for producers to develop legalisation and criminalisation; its rele- strains of cannabis with ever higher THC vance as an alternative in New Zealand content. Urban myths notwithstanding, has been cogently argued,10 but available THC drives recreational use as well as evidence indicates that we still have a long reported symptom relief and side-effects way to go to achieve this.11,12 of ‘medicinal’ cannabis.5 Another cannabis

Competing interests: Nil. Author information: David B Menkes, Associate Professor of Psychiatry, Waikato Clinical Campus, University of Auckland, Hamilton; Nicholas Hoeh, Consultant Psychiatrist/Professional Teaching Fellow, University of Auckland School of Medicine, Auckland. Corresponding author: David B Menkes, Associate Professor of Psychiatry, Waikato Clinical Campus, University of Auckland, Private Bag 3200, Hamilton 3240. [email protected] URL: www.nzma.org.nz/journal-articles/high-time-to-decide

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REFERENCES: 1. Mellsop G, Tapsell R, symptom relief. Scientifi c 10. Bower L, Stevens D. Better Menkes DB. Testing a Reports. 2019; 9(1):2712. to decriminalise canna- hypothesis arising from 6. Wall MB, Pope R, Free- bis rather than legalise the epidemiology of man TP, Kowalczyk OS, it - bill opponents. Stuff schizophrenia in New Demetriou L, Mokrysz C, [Internet]. 2020. Epub 6 Zealand. General Psychia- et al. Dissociable effects May 2020. Available from: try. 2019; 32(2):e100048. of cannabis with and http://www.stuff.co.nz/ 2. Hasan A, von Keller R, without cannabidiol on the national/health/300005217/ Friemel CM, Hall W, human brain’s resting-state better-to-decriminalise-can- Schneider M, Koethe functional connectivity. nabis-rather-than-legal- D, et al. Cannabis use Journal of Psychopharma- ise-it--bill-opponents and psychosis: a review cology. 2019; 33(7):822–30. 11. The number of charges of reviews. European 7. Menkes DB. The double and number of people Archives of Psychiatry edged sword of medi- charged and convicted and Clinical Neuroscience. calising cannabis. BMJ. of cannabis offences 2020; 270(4):403–12. 2019; 365:l4066. (2010–2020). Ministry of Justice, New Zealand 3. Murray RM, Hall W. Will 8. DeVylder JE, Mittal VA, Government. http://www. legalization and commer- Schiffman J. Balancing justice.govt.nz/justice-sec- cialization of cannabis the public health costs of tor-policy/research-data/ use increase the incidence psychosis vs mass incarcer- justice-statistics/data-tables/ and prevalence of psycho- ation with the legalization sis? JAMA Psychiatry. of cannabis. JAMA Psychia- 12. Holden M. Think we’re 2020; 77(8):777–8. try. 2020; published online no longer criminalising 4. Bagot KS, Milin R, Kaminer 2 September: 10.1001/ people for using cannabis? Y. Adolescent initiation of jamapsychiatry.2020.591. Think again. The Spinoff [Internet]. 2020. Epub cannabis use and early-on- 9. Grucza RA, Vuolo M, Krauss 31 July 2020. Available set psychosis. Substance MJ, Plunk AD, Agrawal A, from: http://thespinoff. Abuse. 2015; 36(4):524–33. Chaloupka FJ, et al. Canna- co.nz/society/31-07-2020/ 5. Stith SS, Vigil JM, Brock- bis decriminalization: think-were-no-longer- elman F, Keeling K, A study of recent policy criminalising-people-for- Hall B. The association change in fi ve U.S. states. using-cannabis-think-again/ between cannabis prod- International Journal of uct characteristics and Drug Policy. 2018; 59:67–75.

NZMJ 25 September 2020, Vol 133 No 1522 ISSN 1175-8716 © NZMA 184 www.nzma.org.nz/journal 100 YEARS AGO

Politicians and Physicians August 1920

n discussing the Masseurs’ Registration “Measles it is, you silly hens! Bill in the New Zealand Parliament, Mr. “Nothing’s wrong with ‘is abdomens! Isitt said that three doctors in consulta- I “Blinder than the politicians!” tion had diagnosed appendicitis and advised operation, but a woman declared the case to Bawled she at the three physicians. be measles and the woman was right. The The patient then sat up in bed, general opinion of the politicians who spoke And fl ung a bottle at the head in the discussion is that doctors belong to a Of each doctor, and loud shouted, close corporation and should not be further entrenched in their privileges. If the medical When he saw the three were routed— profession had the same voting strength as “Other help I shall now enlist: the coalminers or the waterside-workers it “I’ll send for a homeopathist, would be immune from criticism by mem- “A quack masseur with supple wrist, bers of Parliament. It is a curious anomaly “A chiropractic for my spine that Parliament prescribes certain qualifi ca- tions for medical practitioners, but the only “To set the vertebrae in line, qualifi cation necessary for a member of Par- “Metaphysicians, come along liament is that he must attract more votes “And join the merry quacking throng, than his opponents, occasionally at the cost “Also the Christian science crew, of his self-respect. He need know nothing of history or political economy, and, indeed, “Likewise faith healers shall come too, sometimes a man is elected to Parliament “And a messenger must be sent who is devoid of average intelligence. “For Mister Isitt, Parliament!” Proof indeed? Let this suffi ce it— So this is wisdom, it is said, The plain tale of Mr. Isitt; Political wisdom in N. Zed. He, a member of Parliament, Take your boots to navvies to botch, Thitherward by the people sent, And let the blacksmith mend your watch. Tells how a lad in sickness sore Close corp’rations do not favour— Did bring three doctors to his door. If you’re sick, consult a neighbour. They talked together and looked wise If you are tired, rest on your head, And operation did advise. And keep awake when you’re abed. But a wise woman, standing by, If you are ever in a fi x, Saw the lad had a bleary eye, Study the latest politics. Heard him cough, and observed the spots, To Mister Isitt pay good heed; Called the doctors three silly sots. Verbum sap. should be all you need.

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