Letters

To the Editor: When statutes govern clinical activity, doctors need to know exactly what those legislative provisions mean. Nahm and colleagues1 address this in their article on eligibility for Australia's voluntary assisted dying (VAD) laws.1 However, in our opinion, the authors misinterpreted the relevant provisions, risking reduced access for eligible patients. Generally, a statutory provision should be given its “ordinary and natural meaning”;2 in other words, a plain English interpretation. As the authors note, each of the VAD Acts uses a particular form of words to set eligibility around a terminally ill person's life expectancy. In Victoria, for example, a coordinating medical practitioner must conclude their patient has been “diagnosed with a disease, illness or medical condition that … is expected to cause death within weeks or months, not exceeding 6 months”.3 Nothing in that wording refers to a probabilistic estimation of the percentage chance that the patient will die within 6 months nor any estimation of the best‐case scenario, as Nahm and colleagues suggest. If the Victorian Parliament had wanted this type of estimation, wording reflecting it could have been inserted into the Voluntary Assisted Dying Act 2017 (Vic). Instead, what is needed is that doctors have an expectation, based on the patient's clinical condition, that the illness will result in death within weeks or months, with the proviso that the number of months that the expectation of death will occur within is 6 or fewer. That clinical judgement is the beginning and end of this criterion. Although that judgement might be informed by knowledge about survival times and even by knowledge about doctors’ accuracy judging survival times, doctors need only certify that they expect that the patient's illness will cause death within 6 months. Nahm and colleagues are wrong to conclude that this wording might mean that people eligible for VAD would be “those with an expected survival time of 2 months”. That is not what the legislation says, and it is a mistake to introduce elements that are not there. Such an interpretation could, in practice, convert the 6 months test to 2 months for some patients, with the risk of narrowing access to VAD for patients the Parliament intended to be eligible.

Christopher J Ryan · Ben P White · Cameron L Stewart

To the Editor: Molecular diagnostics with whole genome sequencing (WGS) of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) has been well described as a method to monitor the evolving epidemiology of the coronavirus disease 2019 (COVID‐19) pandemic and coordinate public health responses.1,2 WGS allows for the accurate identification of COVID‐19 variants, which, when combined with accessible diagnostic testing with polymerase chain reaction (PCR) and rapid antigen tests, supports contact tracing and public health action.1,2 Since January 2022, by agreement with the Forensic and Scientific Services reference laboratory, it has been our practice at the Prince Charles Hospital — a tertiary cardiothoracic transplant centre in Brisbane — to sequence all SARS‐CoV‐2 samples of patients requiring hospital admission for COVID‐19. The rapid turnaround times, averaging 36 hours, supported decisions on variant‐specific therapeutics and optimised bed management. The first case of the Omicron BA.2 subvariant detected at our centre was from a sample collected on 4 March 2022 (Box). This was 17days before public announcements of the dominance of the BA.2 strain by the Queensland Chief Health Officer on 21 March 2022.3 With the anticipated increase in local BA.2 cases, we were able to tailor our hospital level response in real time.4 Initially, even though case numbers were low, from an infection prevention and control perspective, we cohorted BA.1 and BA.2 patients separately to mitigate the risk of nosocomial co‐infection. We maintained the workforce and resourcing surge capacity with a second COVID‐19 ward that opened within days of the initial BA.2 case being identified. Furthermore, genome sequencing for COVID‐19 therapeutics resistance mutations led to alterations in clinical management as BA.2 became the dominant local strain, given its lack of susceptibility to sotrovimab. At the hospital and health service level, access to rapid WGS for identification of emerging variants provides the basis for greater infection prevention and control practices, resource and workforce management, and epidemiological monitoring, and carries implications for clinical management and therapeutics. WGS allows for rapid detection and contact tracing of nosocomial outbreaks, supporting identification of chains of transmission within hospitals. This information augments infection prevention and control by identifying gaps in current practice as well as supporting safer health care environmental design that minimises nosocomial transmission. Furthermore, detection of novel variants at the hospital level can help to predict new waves that require allocation of additional staffing and resources. The Australian Government has recognised the evolving role of microbial genomics in public health surveillance but has not yet committed to further development to optimise personalised medicine, hospital care, and therapeutic decision making.5 We strongly advocate for the inclusion of funding for sustainable rapid WGS that provides real‐time results under the Medicare Benefits Schedule. This will expedite Australia's transition to living with COVID‐19 and will allow us to better prepare our health system to manage new and emerging pathogens into the future. Box – Number of patients admitted and sequenced with coronavirus disease 2019 (COVID‐19) at the Prince Charles Hospital from 1 January to 3 April 2022 by genotype* *Bubble size range, 1–9; total number of patients, 256.

Matthew B Eustace · Ambika Sud · Craig Thompson · Sanmarie Schlebusch · Robert L Horvath

To the Editor: As nicotine prescribers, we welcome much needed advice for doctors on prescribing nicotine. However, we disagree with several recommendations and concerns raised in the article by Ween and colleagues.1 First, in our experience, the recommended starting nicotine concentration of 18mg/mL is inappropriate for most new users. The most popular devices for transitioning to vaping (pod vapes) have small batteries and require higher nicotine salt concentrations to effectively relieve cravings and withdrawal symptoms, typically 20–50mg/mL.2 On the other hand, 18mg/mL would be too strong for a smoker with low nicotine dependence using a more powerful vape pen or mod device. The concentration of nicotine required should be personalised for each user based on the level of nicotine dependence, device type and puffing topography.3 Second, the authors’ concerns about the toxicity of nicotine are overstated in our view. Nicotine is a toxic poison in its highly concentrated form, but the low concentrations used for vaping carry minimal risk of serious harm, although the long term impact of inhaled nicotine on lung tissue is not yet known.4 Third, Ween and colleagues raise concerns about the addictiveness of nicotine. However, most smokers who switch to vaping are already nicotine‐dependent. Dependence on vaping is generally less than for smoking5 because, in many cases, peak nicotine levels from vaping are lower and nicotine delivery is slower. In vitro and animal studies suggest other chemicals in smoke may also increase dependence, but human studies are lacking.6,7 Fourth, a blanket “3‐month prescription maximum” and an “agreed abstinence plan” do not recognise the diversity of the needs of smokers. Switching to vaping and then ceasing smoking can take many months or years for some smokers. Many continue to vape long term to avoid relapse to smoking or for perceived benefits. Therefore, a more flexible and personalised approach is needed. Last, Ween and colleagues are correct that unknown harms from flavours may appear over time and these need to be carefully monitored. However, flavours are an integral part of the appeal of vaping. Flavours encourage the uptake of vaping by smokers and are associated with higher quit rates.8,9 A recommendation to avoid flavours risks inadvertently increasing smoking.

Colin P Mendelsohn · Carolyn Beaumont

To the Editor: We read with interest the article by Drewett and colleagues,1 on anaphylaxis presentations to emergency departments in Victoria, and the linked editorial by Lucas and Vale,2 which proposes a comprehensive adverse drug reaction registry to improve patient safety and care. Re‐exposure of a patient to a medicine to which they have had a previously documented allergy or adverse drug reaction (ADR) is a preventable clinical incident. The Australian sentinel events list includes “medication error resulting in serious harm or death” to ensure public accountability and transparency and drive national improvements in patient safety.3 The availability of accurate and up to date allergy/ADR information for prescribers is vital to support the decision on appropriate treatment and to prescribe a medicine. It is also critical that health professionals who administer medicines and pharmacists who dispense medicines have access to accurate allergy/ADR information, as they provide redundancy within the medication management system to prevent unintentional re‐exposure. We recently undertook an audit to assess the accuracy of medication history documentation performed by pharmacists. Our methodology has been published elsewhere.4 As part of this work, we assessed the quality of pharmacist‐documented allergy/ADR information. Allergy/ADR documentation best practice suggests documentation of the medication name, reaction details and reaction date.5 New findings from our audit identified a total of 108 allergies/ADRs across 99 patients. Of the 52 patients with a previous history of allergy/ADR, only 31% (n = 16) had complete and correct allergy/ADR information documented. These results highlight that the current systems do not adequately support clinicians to provide safe and high quality care. Moreover, these systems risk patient harm through inadvertent re‐exposure to a medicine where there is a previously documented allergy/ADR, given that, at the point of prescribing, administration or dispensing, data are not available, disparate, incorrect or incomplete. We believe the national allergy/ADR registry proposed by Lucas and Vale2 should go one step further, and legislation should mandate interoperability between all electronic prescribing, administration and dispensing systems in Australia. A further challenge will be populating accurate historical allergy/ADR information into the registry. It would require high quality documentation to assist informed clinical decision making. An additional challenge is the complex, hybrid paper and electronic prescribing and documentation systems used across health care settings. Even though these may be challenges to overcome, there are potential opportunities through patient engagement, incentive schemes and machine learning. There needs to be a national consumer‐focused education campaign so the public can be active participants in their own care to support optimal medicine choice based on their allergy/ADR history. We believe a national allergy/ADR registry is of key importance to further enhance patient safety and will be a true system change to overcome the barriers we face in day‐to‐day clinical practice.

Martin L Canning · Andrew Munns · Bonnie Tai

To the Editor: Data from the United States, the United Kingdom, and Canada have highlighted rapidly rising medical education and specialty training costs as a key deterrent to diverse and lower socio‐economic medical graduates from pursuing specialty training. Australia is likely to be experiencing similar patterns, but there have been little published data or research in the domain. For example, a study into costs of specialty surgical training in the United Kingdom and Ireland revealed that medical officers can spend up to £71000 on mandatory training costs during their Fellowship,1 on an average junior medical officer salary of £41000 pounds per year.2 This does not include the additional expected costs such as conferences and postgraduate degrees. In the background, mean debt on graduation from medical school has increased by 55%, from £17892 in 2004 to £27655 in 2014.3 A 2015 study predicted that most English medical students will be unable to repay their student loan before reaching the 30‐year write‐off.4 Australia is experiencing similar forces. When university fees were deregulated in 2014, the then Australian Medical Association president Brian Owler5 and the Grattan Institute6 predicted that full‐fee domestic places in Australian medical schools could rise by up to 270% to $70000 per annum. As foretold, a full‐fee domestic student now pays up to $77888 per year tuition, for a total estimated course fee of $335707 (Doctor of Medicine, University of Melbourne, 2022),7 which exceeds the combined HELP (Higher Education Loan Program) loan limit of $156847.8 Unlike overseas, there are no reports on medical specialty training cost trends in Australia. However, archived publicly available data give a general sense that local costs are rising much like those overseas. For example, annual training fee sums range from $483 (Royal Australian College of General Practitioners9) to $5714 (Australasian College of Dermatologists10) between colleges. This fee covers mandatory trainee subscription or membership to the college but does not include all the other mandatory costs such as exam and elevation fees, which vary between training programs. There is undoubtedly considerable difference in fee structures, and such numbers are difficult to compare between colleges. Nevertheless, without transparent data, we are unable to interrogate the concerns that have been identified in overseas studies. The ramifications are potentially vast and varied. New Zealand data show that student loan debt is a common influence on choice of specialty and is a consideration when choosing to stay in the country to practise once trained.11 This may lead to long term consequences for the structure of the medical workforce and appropriate service delivery for patients. As a first step, it is critical that we take action to improve collection and transparency of medical training cost data in Australia.

James Brown

To the Editor: The concepts presented by Coman and colleagues1 parallel international trends within anatomical societies, where attitudes on human remains used for educational purposes are under scrutiny.2 Illuminating issues around legacy collections, and pressing for further clarity, transparency and appropriate cultural and ethical solutions, is important for the proper treatment of these precious resources. It is also necessary given recent events that have raised concerns within the public about how human remains and anatomical collections are treated under the guise of education.3 We strongly support the points made by Coman et al around development of repatriation policies for privately held bones, but we respectfully suggest additional considerations. The suggestion “Medical ethicists assert that in the absence of consent, anatomical specimens … should be destroyed”1 is not congruent with current suggestions and practice.4 Anatomical collections that have no provenance or consent are often used as teaching resources and represent the tangible legacies of histories of this field of science. As such, they serve the additional educational purpose of eliciting discussions on contemporary ethical and professional practice.5 There are also benefits associated with using real bones as opposed to three‐dimensional or plastic copies that do not retain the same weight, detail or nuanced anatomical features. Arguments do exist for disposition of unconsented collections, but these should be considered against the educational value these remains deliver and the social, ethical and cultural concerns around their ongoing use. In proposing consultation across various groups to clarify appropriate practice around “managing the legacy of human bone use in education,“1 we suggest it is necessary to include other specific interest groups to ensure community‐appropriate practices are developed. It is essential that community input is acquired, with indigenous representatives contributing knowledge and perspective. In addition, input from organisations that contribute expertise specific to national and international standards and practice are necessary. This should include local organisations, the Australian Institute of Anatomical Sciences and the Australian and New Zealand Association of Clinical Anatomists, and globally, the International Federation of Associations of Anatomists ethics committee. Such broad input is necessary to ensure guidelines are fit for purpose in a global education community.

Jon Cornwall · Sabine Hildebrandt · Thomas Champney

To the Editor: Zhao and colleagues1 recently published an article highlighting the improved life expectancy for Aboriginal and Torres Strait Islander men in the Northern Territory over the past 20years.1 This is both important and welcomed. It reflects consistent and concerted work of countless individuals and organisations that are contributing to the improved health and wellbeing of Aboriginal and Torres Strait Islander men in the NT, despite limited resources to do so. It makes sense that we are beginning, albeit slowly, to see these inroads. One example of contributing to the positive outcomes for Aboriginal and Torres Strait Islander men’s health in the NT is the evolution of the Darwin Men’s Inter‐Agency Network (DMIAN). DMIAN is a network of men from across government and the non‐government organisation sector to collaboratively advocate for Aboriginal and Torres Strait Islander men in Darwin.2 DMIAN has enabled men’s health researchers to better understand and act on the wants and needs of the Aboriginal and Torres Strait Islander men in the community from the perspective that matters most: their own. As Zhao and colleagues1 point out, there is still a long way to go with improving the life expectancy of Aboriginal and Torres Strait Islander men, which sits 15.4years behind non‐Indigenous men. In addition, as the life expectancy of Aboriginal and Torres Strait Islander men increases, so too does that of non‐Indigenous men.1 So if we are to close the gap, we cannot afford to lose momentum on targeted action, particularly that relating to Aboriginal and Torres Strait Islander male health and wellbeing.3,4 There is still a need for this to be a recognised priority in the NT and nationally, and for primary health care and social services in the NT to be resourced appropriately. In particular, the Aboriginal Community Controlled Health Services and Aboriginal medical services have a key role to play and should be funded to develop, implement and evaluate health and social and emotional wellbeing programs for male clients, as this is severely lacking and is ultimately hampering progress in Aboriginal and Torres Strait Islander male health and wellbeing outcomes.4 While the National Men’s Health Strategy identifies Aboriginal and Torres Strait Islander men as a priority population,5 we also need substantially more investment in research and evaluation to find new innovate solutions.6 We hope the important work being done by individuals in health, justice, education and other social services sectors continues to be enabled to support Aboriginal and Torres Strait Islander men for the benefit of their communities and future generations.

Kootsy Canuto · Karla J Canuto · Jason Bonson · James Smith

To the Editor: We endorse the call of Flavel and colleagues1 for improved data on, and greater attention to inequities in, social determinants of health. People with disability experience poorer health than the general population. Much of this disparity is attributable to entrenched disadvantage in social determinants of health such as employment, housing, and violence.2 Ongoing impacts from the coronavirus disease 2019 (COVID‐19) pandemic may increase disparities in social determinants and health outcomes for people with disability. Yet people with disability remain largely invisible in key data sources.3,4 Disability identifiers are included in several national surveys conducted by the Australian Bureau of Statistics (eg, the Survey of Disability, Ageing and Carers5 and General Social Survey6) and some of the longitudinal datasets mentioned by Flavel and colleagues. However, survey data have limitations: they are based on a population sample, capture data at specific time points, and rely on self‐report information (eg, on income, service use). National surveys typically exclude individuals living in settings such as boarding houses and welfare institutions, where people with disability are over‐represented. Administrative datasets complement survey data. They capture more detailed and often continuous data on individuals, their contact with services and related outcomes. Regrettably, disability status is rarely collected in administrative datasets in Australia. Work is underway on the National Disability Data Asset,7 comprising linked data from multiple state, territory and national administrative sources. This asset will require a robust and consistent basis for identifying individuals with disability, beyond the subset of people identified by their contact with disability‐specific programs or payments. Australia urgently needs a nationally agreed, consistent disability identifier to leverage the opportunity provided by the National Disability Data Asset to identify and monitor disparities in health and social determinants experienced by Australians with disability. Development of such a disability identifier is essential to build a strong evidence base to deliver better outcomes and reduce health inequities. Crucially, people with disability and their representative organisations must be involved as key drivers and decision makers at every stage of development and implementation of the to‐be‐developed national disability identifier.

Nicola Fortune · Jodie Bailie · Gwynnyth Llewellyn

To the Editor: Khatri’s and Stuckey’s1 article, Vertebral fractures after denosumab discontinuation for dental procedures: a consequence of distorted perceptions of risk, sums up the authors’ knowledge and experience of medication‐related osteonecrosis of the jaws (MRONJ) in the latter part of the title. They quote the risk of MRONJ as being very low and equal for denosumab and oral bisphosphonates. This is incorrect. The risk of MRONJ is 0.3%.2 In our study we found the risk following extractions at 1.8%.3 The recent 2022 update of the position paper on MRONJ4 found that the risk with denosumab is an order of magnitude higher than for bisphosphonates. There is no discussion in Khatri’s and Stuckey’s article1 of the effect of MRONJ on patients. A patient with stage 3 or end‐stage MRONJ has months of severe pain and requires jaw resection with or without microvascular reconstruction similar to that required for advanced jaw cancer.4,5 The impact of this is similar to vertebral collapse, both largely avoidable disasters. The current Australian recommendations for dental extractions for patients taking denosumab for osteoporosis are to delay extractions to 6 months after the last injection of denosumab and then to allow 4weeks for initial socket healing before the next injection.6 The risk is greater if the patient has been taking antiresorptives for more than 4years and if they are immunocompromised.4,7 We would agree that education and communication between prescribers, patients and dentists are key. This can only be achieved by close, mutually respectful communication and understanding between medical, dental, oral and maxillofacial surgeons and patients. However, this is easier to say than put into meaningful practice. Most definitive articles on MRONJ are in oral and maxillofacial surgery journals, which are not commonly read by physicians who prescribe antiresorptives. The most likely reason that the patient was taken off denosumab for 5 months was that the dental plan was not only to extract the teeth but to replace them with dental implants. Implants require time for osseointegration.8 Hopefully, this letter helps correct the distorted precepts expressed by Khatri and Stuckey for prescribers of this, otherwise, useful drug.

Alastair Goss

To the Editor: We write in response to Reid and colleagues’1 article on congenital cytomegalovirus (CMV). While many countries worldwide have established congenital CMV screening programs, Australia urgently needs to recognise the importance of targeted congenital CMV screening and tracking its outcomes. Our 2019–2020 study tested the feasibility and acceptability of a parent‐completed targeted congenital CMV saliva polymerase chain reaction (PCR) screening program in Victoria.2 Parents of infants who did not pass their newborn hearing screening at four Victorian maternity hospitals completed their infants’ saliva swabs in the hospital or at home. The program was feasible with a 76% participation rate, and all 96 swabs (100%) were completed within the required 21days from birth, despite the majority being completed at home. Furthermore, more than 90% of families found the screen easy to do, thought it was a good idea, and were glad their baby had congenital CMV screening. However, there were challenges: false positive screens due to CMV contamination in breast milk, and excessive time taken from completing the screen to return of results due to reliance on the only laboratory in the state accredited to process saliva CMV PCR. We now have the means to overcome these challenges, determine whether universal congenital CMV screening in Australia is warranted, and systematically track outcomes of targeted congenital CMV screening. For 2years from October 2021, Murdoch Children’s Research Institute’s Generation Victoria (GenV) is recruiting a whole‐of‐state infant–parent cohort, collecting over 110000 saliva swabs from newborns to test for CMV using novel CRISPR technology at the Walter and Eliza Hall Institute of Medical Research.3 Our study, funded by the National Health and Medical Research Council, will determine the population prevalence of congenital CMV, develop a rapid bedside point‐of‐care test for congenital CMV screening, and establish whether universal congenital CMV screening is cost‐effective. In addition, the Australasian Congenital CMV Registry has been recently established to track outcomes of congenital CMV.4 These initiatives will pave the way for Australia to emerge as a leader in congenital CMV screening, better recognise this undetected condition of public health importance, and provide personalised care to affected children.

Emma Webb · Cheryl A Jones · Valerie Sung

To the Editor: The article by Iorfino and colleagues1 presents interesting follow‐up data on young people attending two mental health clinics. For 1510 of 2901 young people who presented in 2008–2018 with anxiety, mood or psychotic disorders, the authors identified trajectories in social and occupational functioning over 2years. Iorfino and colleagues describe the model as “primary care‐based” and “low intensity”, but it is neither generalist primary care nor low intensity as it comprises headspace plus specialised services and hospitalisation if needed. Several limitations, including 48% of patients excluded and the lack of a comparison group, make any conclusions problematic. Box 3 suggests little average change, but a latent class analysis suggests that one‐third participants who were well functioning at baseline had good functional outcomes, while the remaining two‐thirds “had generally poor functional outcome patterns”. The data are compatible with a range of conclusions, including “findings suggest that employment and engagement in education and training are protective” or “the treatment model makes no discernible difference to young people’s social and occupational functioning”. Yet Iorfino and colleagues claim that “findings suggest that the current primary care‐based model meets the needs of only a minority of young people seeking care” and call for “more comprehensive and multidisciplinary approaches because of substantial comorbidity, ambiguous or attenuated symptomatology”. This sounds like general practice, where undifferentiated illness and multimorbidity are the norm. Contrary to Iorfino et al, who state that “conclusions about the effects of specific treatments cannot be drawn”, McGorry in the accompanying editorial2 claims that findings “clearly illustrate what else is needed” — “more sustained, expert, and multidisciplinary care”. He uses the editorial to champion headspace and request yet more financial support. McGorry characterises the two‐thirds with persisting poor functioning as the “missing middle” for whom he advocates scaling up his model of care, developed for people with psychosis, to “be rapidly installed across the nation”, claiming “Countless lives and futures will be saved”. Given the uncertainty of the evidence, it is difficult to understand how such sweeping claims have survived the peer review process. Decisions on investment in mental health care should be based not on rhetoric, but on a rigorous and impartial review of the evidence and research to develop the evidence base.

Katharine A Wallis · Nicholas A Zwar · Paul P Glasziou

To the Editor: We read with interest the article by Kelly and colleagues,1 In our opinion, the authors’ statement “Access to timely gender‐affirming care is associated with improved mental health outcomes and overall wellbeing” is not well supported by the two citations provided. The first citation is a systematic review by Rew and colleagues.2 A critique of this review was recently published.3 Rew et al, in response, clarified that they did not make any causal statements about puberty blockers and reported improved mental health outcomes, but believe their findings warrant more rigorous longitudinal studies.4 Kelly and colleagues’ second citation is a systematic review by Mahfouda et al.5 This review concluded there is only scarce and preliminary evidence that hormonal and surgical gender‐affirming treatments in adolescents are associated with mental health benefit and improved quality of life. The available evidence was described as having multiple methodological limitations and being at medium to high risk of bias. The authors called for further urgent research to clarify long term outcomes on psychological functioning and safety. Importantly, two recent systematic reviews by the United Kingdom’s National Institute for Health and Care Excellence found that the results of the studies investigating the benefits or adverse effects of puberty blockers and gender‐affirming hormones are of very low certainty and, as the studies themselves may not be reliable, any identified changes could be due to confounding, bias or chance.6,7 The recently published interim report of the UK’s Cass Review also noted that there are different views on the benefits versus harms of early social transition and more information about outcomes is required.8 In conclusion, the literature does not support there being a robust evidence base for the gender‐affirming social, medical and surgical interventions for children and adolescents. Rather, the literature highlights the scarce and low quality evidence and the urgent need for more high quality evidence. In any consideration of the processes of informed consent and/or court consent it would seem imperative that there is acknowledgement of the uncertain evidence base underpinning these interventions. Thus, it is of concern that Kelly and colleagues fail to do this.

Alison Clayton · Roberto D’Angelo · Patrick Clarke

To the Editor: We read with interest the article by Agarwal and colleagues1 outlining the recommendations from the Health Services Research Association of Australia and New Zealand for implementing patient‐reported outcome measures (PROMs) to guide clinical care. The article regrettably fails to acknowledge that most of the commonly used PROMs — largely developed without direct patient participation — may merely provide a patient‐rated version of a measure that nevertheless reflects the clinician’s or researcher’s, not the patient’s, perspective.2,3 Importantly, “patient‐reported” conveys only that the measurement instrument — usually a scale or questionnaire — is completed by the patient. The emphasis is placed on the source of the information (ie, the patient) rather than on its content. It does not automatically imply that the information thus obtained is necessarily of value or relevance to the patient. As an attempt to shed light on this issue, our group elaborated a classification system for PROMs according to the degree of patient involvement in their development:2 patient‐generated PROMs — a type of PROM developed entirely from the patient perspective, as at all stages of PROM development the researchers are themselves patients; patient‐centred PROMs — a kind of PROM that explicitly incorporates, to a greater or lesser extent, patient priorities, given that patients themselves codeveloped the PROM jointly with other stakeholders (eg, clinicians); patient‐valued PROMs — a variety of PROM developed without patient input but valued by most patients because it reflects, at least in part, their priorities; and patient‐irrelevant PROMs — a type of PROM developed entirely without patient participation, whose contents are evaluated as not relevant by patients themselves. Fortunately, the epistemic injustice of disregarding the patient’s perspective in PROMs development is being progressively abandoned, and there seems to be a growing consensus that patients should be significantly involved — through truly participatory methods — in developing any new PROM.2,4,5 Without genuinely incorporating the patient’s perspective in PROMs development, PROMs collection will not contribute to a true and meaningful involvement of patients in their health care.

Joan Trujols · Santiago Duran‐Sindreu · Maria J Portella

To the Editor: The impetigo burden for Australian Aboriginal children living in remote areas is the highest in the world, affecting 45% at any one time.1 This unacceptable public health crisis contributes to ongoing high rates of rheumatic fever and glomerulonephritis, both sequelae of Streptococcus pyogenes or group A streptococcus (GAS) infection.2 GAS infection is the key immediate driver of impetigo.3 Colonisation, social determinants and inadequate housing are overarching drivers.4 To reduce the skin infection burden, the See, Treat, Prevent (SToP) Trial (registered with the Australian New Zealand Clinical Trials Registry, ACTRN12618000520235) was funded as a stepped wedge, cluster randomised trial in partnership with Aboriginal service providers and communities to see, treat and prevent skin infections.1 Before commencing, a situational analysis5 was performed in 2017 to describe trends, driving forces and conditions related to skin infections. The situational analysis5 identified the complex, courageous yet under‐resourced environmental health and health promotion activities in the Kimberley that could be included as prevention aspects in the SToP Trial1 and found: • a well established program of health advocacy and collaboration integrating public and environmental health which prioritises prevention; • remote Aboriginal populations remain relatively stable with predictable mobility between communities, in contrast to the high turnover of the predominantly non‐Aboriginal health workforce; and • access to household maintenance throughout Kimberley communities, necessary to prevent skin infections, remains limited and frequently under‐resourced. Despite this need, the resourcing required for this sector to deliver on these services has not occurred.6 Before the SToP Trial, prior skin infection studies focused on biomedical treatments as short term solutions to improve skin health.1 Integration of diagnosis, treatment and prevention activities in a single trial to inform skin disease control is novel and needful. Aboriginal communities and health care organisations highlighted the urgent need to incorporate prevention to reduce the inequitable burden of skin infections. The key findings of the situational analysis are as follows:5 • services are working together to combat the high burden of skin infections in the Kimberley; • the immediate environment continues to contribute to poor skin health and is an area for intervention; • addressing the social determinants of health is critical to reducing skin infections; • partnerships are required to appropriately achieve the healthy living practices; and • the Kimberley has led the way with the development of the environmental health referral form. The SToP Trial includes clinic and school staff training modules for the identification and treatment of skin infections. These include online options to overcome the logistic challenges limiting face‐to‐face professional development in isolated locations and to support continuous training of new staff. The stability of the community is a strength and community requests have led to the incorporation of family training packages. Partnerships between primary health care and environmental health service providers are allowing for the better integration of prevention measures within communities. Capitalising on the advocacy and collaboration demonstrated by Aboriginal leaders across the region has aided SToP Trial initiatives, with results expected in 2023.

Frieda McLoughlin · Vicki O’Donnell · Asha C Bowen

To the Editor: Wu and colleagues1 describe a case of congenital syphilis where the mother had no apparent risk factors and a single negative syphilis serology collected in early pregnancy. The father had an identifiable risk factor. In metropolitan Perth, Western Australia, infectious syphilis among women of reproductive age is rising, with an over 18‐fold increase from 2015 to 2021 (Box). During this period, most cases (229, 74.1%) were non‐Indigenous women. This growth has been accompanied by cases in pregnancy and, concerningly, neonates with congenital syphilis. The authors1 observed that identifying risk factors during pregnancy is challenging. They may be absent, difficult to ascertain, subject to change during the pregnancy, and are dependent on the pregnant woman and her sexual partners, whose risks she may not know. Identification relies on health care providers checking the risk throughout pregnancy and on whether the woman recognises, discloses or feels safe to discuss a risk factor. In Perth, syphilis diagnoses among pregnant women are occurring across cultural backgrounds. While some women have additional risks such as insecure housing or illicit drug use, this is not the norm. Consequently, and because we have likewise observed neonates with congenital syphilis born to women who screened negative early in pregnancy, routine syphilis serology at initial visit and at 28 and 36weeks (or delivery, if earlier) is now recommended for all pregnant women in metropolitan Perth as per the WA sexual health guidelines2 and local obstetric guidelines.3 This was achieved through the collaboration of clinical and public health staff under the Antenatal and Postnatal Working Group of the WA Syphilis Outbreak Response Group, where a decision was made that monitoring risk factors throughout pregnancy has limitations. Three‐test syphilis screening for all pregnant women minimises the risk of congenital syphilis occurring because of an unrecognised risk factor, ensures emerging risk factors are not missed, helps normalise testing and reduce stigma, and recognises that women remain sexually active while pregnant. Notably, screening is not a replacement for good history taking and clinical examination, but syphilis can present in subtle and unusual ways that can be overlooked. Routine syphilis testing at the first antenatal visit is advised by the Australian sexually transmissible infections guidelines.4 A test early in the third trimester is recommended depending on local guidelines.4 As syphilis rates grow in many parts of Australia,5 other jurisdictions should consider adopting additional routine syphilis screening for all pregnant women. Box – Infectious syphilis cases among women of reproductive age, 2015–2021 Data sources: The number of cases were obtained from the Western Australian Notifiable Infectious Diseases Database, Department of Health Western Australia (Jan 2022); and the rate of cases were obtained from the Australian Bureau of Statistics census‐derived population data from the Epidemiology Branch, Public and Aboriginal Health Division, Western Australia Department of Health (Dec 2021).

Hannah MacKenzie · Suzanne McEvoy · Michelle Porter

To the Editor: In Australia, up to 40% of women have experienced an unintended pregnancy,1 which can be associated with suboptimal pre‐conception health behaviour and reproductive health care engagement and adverse maternal and neonatal outcomes.1 Aboriginal and Torres Strait Islander women experience higher rates of pregnancy risk factors, adverse perinatal outcomes, and adolescent pregnancy compared with non‐Indigenous women.2 However, little is known about the prevalence and impact of unintended pregnancy among Aboriginal and Torres Strait Islander women. While two related national studies have been undertaken over the past decade, Aboriginal and Torres Strait Islander people were underrepresented1 or Indigeneity was unreported.3 Access to sexual and reproductive health care is a government priority,4 but without adequate data, dealing with issues or evaluating change will be impossible. This knowledge gap must be addressed. We need to better understand the prevalence, experiences and outcomes of unintended pregnancy for Aboriginal and Torres Strait Islander people (acknowledging that unintended does not necessarily mean unwanted), including issues relating to pregnancy intentions, decision making, and health care access. Meaningful engagement and collaboration with Aboriginal and Torres Strait Islander communities and researchers are required to confirm priority issues, design culturally appropriate data collection processes, and achieve a nationally representative sample. Data sources such as those held by primary health care providers and Aboriginal Community Controlled Organisations have an untapped potential to highlight the needs and priorities of Aboriginal and Torres Strait Islander people, should they be used with appropriate consultation and respect for Indigenous data sovereignty. Furthermore, knowledge gained must inform the national policy gap that exists in the area of holistic reproductive health. A national reproductive health policy and an implementation plan that address unintended pregnancy, decision making and management are urgently needed. These must be developed with due consideration to the needs of Aboriginal and Torres Strait Islander peoples from a strengths‐based paradigm and a decolonising approach that recognises historical reproductive rights violations.5 Data collection within a supportive policy framework will inform service provision, education and health promotion initiatives to improve maternal and infant outcomes and support Aboriginal and Torres Strait Islander women and families in choosing whether and when they have children.

Jessica Botfield · Emma Griffiths · Faye McMillan · Danielle Mazza