<p>Cystic fibrosis, an autosomal recessive disease, causes premature mortality with a current life expectancy of 56 years.<span><sup>1</sup></span> Variations in a single gene encoding the cystic fibrosis transmembrane conductance regulator (CFTR), an anion channel, cause this multisystemic disease.<span><sup>2</sup></span> Bronchiectasis remains the most significant contributor to mortality, with other affected systems including the gastrointestinal, pancreatic, hepatobiliary, sweat glands and reproductive systems.<span><sup>3</sup></span> Clinical manifestations of cystic fibrosis vary widely, leading to diverse phenotypic expressions.</p><p>Over 2000 <i>CFTR</i> variants have been described worldwide, with 719 confirmed as disease causing.<span><sup>4</sup></span> These pathogenic variants are classified based on their functional consequence on the CFTR protein<span><sup>2</sup></span> (Box 1). Class II includes F508del, the most prevalent <i>CFTR</i> variant globally.<span><sup>2</sup></span> In Australia, about 90% of people with cystic fibrosis have at least one copy and about 50% are homozygous for the F508del allele.<span><sup>2, 5</sup></span></p><p>Therapeutic management of cystic fibrosis has evolved significantly over the past century. Aggressive early intervention with optimised nutrition, airway clearance and antibiotics, along with newborn screening and the introduction of specialist centres, increased the life expectancy from 4 to 40 years, but with a significant burden of care impacting quality of life.<span><sup>3</sup></span> A landmark development occurred in 2011, 22 years after the <i>CFTR</i> gene was isolated, with the introduction of the first targeted disease modifying therapy, ivacaftor.<span><sup>2</sup></span></p><p>Four CFTR modulators (ivacaftor, lumacaftor, tezacaftor and elexacaftor) have received approval from major regulatory bodies (Box 2). These approvals followed a development strategy with high throughput screening of 228 000 compounds, using Fischer rat thyroid (FRT) cell lines and human bronchial epithelial cells.<span><sup>2</sup></span> Drug candidates underwent animal toxicity studies and human clinical trials to ensure safety and efficacy. Ivacaftor functions as a CFTR channel potentiator.<span><sup>2</sup></span> Lumacaftor and tezacaftor, first-generation correctors, stabilise the CFTR protein to prevent premature degradation in the endoplasmic reticulum and are currently approved as dual combination medications with ivacaftor.<span><sup>2</sup></span> The latest advancement is the triple combination therapy of two correctors, elexacaftor and tezacaftor, with ivacaftor (ETI), which is approved for people with cystic fibrosis with at least one <i>F508del-CFTR</i> allele.<span><sup>6</sup></span></p><p>The rarity of certain <i>CFTR</i> variants presents a challenge to large scale phase 3 clinical trials. To address this, in vitro data from FRT cell experiments were submitted to the American Food and Dr
{"title":"The equitable challenges to quality use of modulators for cystic fibrosis in Australia","authors":"Laura K Fawcett, Shafagh A Waters, Adam Jaffe","doi":"10.5694/mja2.52527","DOIUrl":"10.5694/mja2.52527","url":null,"abstract":"<p>Cystic fibrosis, an autosomal recessive disease, causes premature mortality with a current life expectancy of 56 years.<span><sup>1</sup></span> Variations in a single gene encoding the cystic fibrosis transmembrane conductance regulator (CFTR), an anion channel, cause this multisystemic disease.<span><sup>2</sup></span> Bronchiectasis remains the most significant contributor to mortality, with other affected systems including the gastrointestinal, pancreatic, hepatobiliary, sweat glands and reproductive systems.<span><sup>3</sup></span> Clinical manifestations of cystic fibrosis vary widely, leading to diverse phenotypic expressions.</p><p>Over 2000 <i>CFTR</i> variants have been described worldwide, with 719 confirmed as disease causing.<span><sup>4</sup></span> These pathogenic variants are classified based on their functional consequence on the CFTR protein<span><sup>2</sup></span> (Box 1). Class II includes F508del, the most prevalent <i>CFTR</i> variant globally.<span><sup>2</sup></span> In Australia, about 90% of people with cystic fibrosis have at least one copy and about 50% are homozygous for the F508del allele.<span><sup>2, 5</sup></span></p><p>Therapeutic management of cystic fibrosis has evolved significantly over the past century. Aggressive early intervention with optimised nutrition, airway clearance and antibiotics, along with newborn screening and the introduction of specialist centres, increased the life expectancy from 4 to 40 years, but with a significant burden of care impacting quality of life.<span><sup>3</sup></span> A landmark development occurred in 2011, 22 years after the <i>CFTR</i> gene was isolated, with the introduction of the first targeted disease modifying therapy, ivacaftor.<span><sup>2</sup></span></p><p>Four CFTR modulators (ivacaftor, lumacaftor, tezacaftor and elexacaftor) have received approval from major regulatory bodies (Box 2). These approvals followed a development strategy with high throughput screening of 228 000 compounds, using Fischer rat thyroid (FRT) cell lines and human bronchial epithelial cells.<span><sup>2</sup></span> Drug candidates underwent animal toxicity studies and human clinical trials to ensure safety and efficacy. Ivacaftor functions as a CFTR channel potentiator.<span><sup>2</sup></span> Lumacaftor and tezacaftor, first-generation correctors, stabilise the CFTR protein to prevent premature degradation in the endoplasmic reticulum and are currently approved as dual combination medications with ivacaftor.<span><sup>2</sup></span> The latest advancement is the triple combination therapy of two correctors, elexacaftor and tezacaftor, with ivacaftor (ETI), which is approved for people with cystic fibrosis with at least one <i>F508del-CFTR</i> allele.<span><sup>6</sup></span></p><p>The rarity of certain <i>CFTR</i> variants presents a challenge to large scale phase 3 clinical trials. To address this, in vitro data from FRT cell experiments were submitted to the American Food and Dr","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 1","pages":"4-9"},"PeriodicalIF":6.7,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52527","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648609","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>Participation is widely recognised as a determinant of children and young people's health.<span><sup>1</sup></span> Both the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (Article 18) and the Convention on the Rights of the Child (Article 12) enshrine participation as an inalienable right.<span><sup>2, 3</sup></span> Despite this, the exclusion and non-participation of Indigenous children, adolescents and young people persists.<span><sup>4</sup></span></p><p>Indigenous children and young people experience worse health outcomes than their non-Indigenous peers and are starkly over-represented in the contact with youth justice and in out-of-home care.<span><sup>5-7</sup></span> We propose this is in part due to their exclusion and non-participation — both as children and as Indigenous people.<span><sup>4, 5, 7</sup></span> These children and young people's stories are often told for them, if at all.<span><sup>4</sup></span> “It didn't matter what I screamed at (Child Protection Services), they wanted to tell my story for me, decide for me, know what was best for me. That's easier than listening, isn't it?”, said one Indigenous young person in contact with the youth justice system.<span><sup>6</sup></span></p><p>Indigenous young people are less likely to access primary health services despite having more health needs than non-Indigenous counterparts.<span><sup>8</sup></span> Most children and young people in the youth justice system have severe neurodevelopmental disorders — nearly all previously undiagnosed and untreated.<span><sup>9</sup></span> Current mainstream health and youth services are failing to provide culturally safe rudimentary services and meet Indigenous children and young people's unique needs.<span><sup>5, 7, 8, 10</sup></span> They have not been designed with meaningful participation of Indigenous people, let alone children and young people.<span><sup>5, 8</sup></span> There is an urgency for meaningful participation of Indigenous children and young people in reform.<span><sup>4, 7, 8</sup></span> There is an urgency for decision makers to listen and act.<span><sup>4, 5, 7, 8</sup></span></p><p>Best-practice mechanisms like the case study provided in this article, the Victorian based youth-led, Indigenous-led Koorie Youth Council, which centres self-determination, can ensure that Indigenous children and young people are empowered.<span><sup>4</sup></span> This article is part of the 2024 <i>MJA</i> supplement for the Future Healthy Countdown 2030, which examines how participating affects the health and wellbeing of children, young people and future generations. Society must not only uphold Indigenous children and young people's rights, but also value their strengths and the expertise they hold about their own lives.<span><sup>4, 5, 7, 8, 11</sup></span></p><p>Participation is not a binary, it exists on a spectrum indicating the degree of agency afforded to individuals or groups to relationally determine
{"title":"Participation of Indigenous children and young people to improve health and wellbeing","authors":"Jordan Cory (Kamilaroi), Hope Kuchel (Barkindji), Bonnie Dukakis (Gunditjmara), Rhian Dicker (Palawa), Sandra Eades (Noongar)","doi":"10.5694/mja2.52490","DOIUrl":"10.5694/mja2.52490","url":null,"abstract":"<p>Participation is widely recognised as a determinant of children and young people's health.<span><sup>1</sup></span> Both the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (Article 18) and the Convention on the Rights of the Child (Article 12) enshrine participation as an inalienable right.<span><sup>2, 3</sup></span> Despite this, the exclusion and non-participation of Indigenous children, adolescents and young people persists.<span><sup>4</sup></span></p><p>Indigenous children and young people experience worse health outcomes than their non-Indigenous peers and are starkly over-represented in the contact with youth justice and in out-of-home care.<span><sup>5-7</sup></span> We propose this is in part due to their exclusion and non-participation — both as children and as Indigenous people.<span><sup>4, 5, 7</sup></span> These children and young people's stories are often told for them, if at all.<span><sup>4</sup></span> “It didn't matter what I screamed at (Child Protection Services), they wanted to tell my story for me, decide for me, know what was best for me. That's easier than listening, isn't it?”, said one Indigenous young person in contact with the youth justice system.<span><sup>6</sup></span></p><p>Indigenous young people are less likely to access primary health services despite having more health needs than non-Indigenous counterparts.<span><sup>8</sup></span> Most children and young people in the youth justice system have severe neurodevelopmental disorders — nearly all previously undiagnosed and untreated.<span><sup>9</sup></span> Current mainstream health and youth services are failing to provide culturally safe rudimentary services and meet Indigenous children and young people's unique needs.<span><sup>5, 7, 8, 10</sup></span> They have not been designed with meaningful participation of Indigenous people, let alone children and young people.<span><sup>5, 8</sup></span> There is an urgency for meaningful participation of Indigenous children and young people in reform.<span><sup>4, 7, 8</sup></span> There is an urgency for decision makers to listen and act.<span><sup>4, 5, 7, 8</sup></span></p><p>Best-practice mechanisms like the case study provided in this article, the Victorian based youth-led, Indigenous-led Koorie Youth Council, which centres self-determination, can ensure that Indigenous children and young people are empowered.<span><sup>4</sup></span> This article is part of the 2024 <i>MJA</i> supplement for the Future Healthy Countdown 2030, which examines how participating affects the health and wellbeing of children, young people and future generations. Society must not only uphold Indigenous children and young people's rights, but also value their strengths and the expertise they hold about their own lives.<span><sup>4, 5, 7, 8, 11</sup></span></p><p>Participation is not a binary, it exists on a spectrum indicating the degree of agency afforded to individuals or groups to relationally determine","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 S10","pages":"S26-S33"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52490","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Muideen T Olaiya, Joosup Kim, Christopher Pearce, Kiran Bam, Dominique A Cadilhac, Nadine E Andrew, Lauren M Sanders, Amanda G Thrift, Mark R Nelson, Seana Gall, Monique F Kilkenny
<div> <section> <h3> Objective</h3> <p>To evaluate the management in Victorian general practice of people who have been hospitalised with stroke or transient ischaemic attacks (TIA).</p> </section> <section> <h3> Study design</h3> <p>Retrospective observational study; analysis of linked Australian Stroke Clinical Registry (AuSCR) and general practice data.</p> </section> <section> <h3> Setting</h3> <p>383 general practices in the Eastern Melbourne, South Eastern Melbourne, and Gippsland primary health networks (Victoria), 1 January 2014 – 31 December 2018.</p> </section> <section> <h3> Participants</h3> <p>Adults who had been hospitalised with acute stroke or TIA and had at least two encounters with the same general practice during the observation period (7–18 months after the acute event).</p> </section> <section> <h3> Main outcome measures</h3> <p>Assessment of cardiometabolic risk factors (blood pressure, serum lipids, blood glucose, urinary protein); prescribing of guideline-recommended prevention medications (blood pressure-, lipid-, or glucose-lowering, antithrombotic agents); attainment of guideline targets for cardiometabolic risk factors at final assessment during observation period.</p> </section> <section> <h3> Results</h3> <p>During 2014–2018, 3376 eligible AuSCR registrants (1465 women, 43.4%) had at least two encounters with one of the 383 general practices during the observation period; median age at stroke onset was 73.9 (interquartile range, 64.4–81.9) years, 737 events were TIAs (21.8%). Blood pressure was assessed in 2718 patients (80.5%), serum lipids in 1830 (54.2%), blood glucose in 1708 (50.6%). Prevention medications were prescribed for 2949 patients (87.4%), including lipid-lowering (2427, 71.9%) and blood pressure-lowering agents (2363, 70.0%). Blood glucose targets had been achieved by 1346 of 1708 patients assessed for this risk factor (78.8%), blood pressure targets by 1935 of 2717 (71.2%), and serum lipid targets by 765 of 1830 (41.8%). The incidence of having risk factors assessed was lower among patients aged 60 years or younger (incidence rate ratio [IRR], 0.97; 95% confidence interval [CI], 0.92–1.03) and those over 80 years of age (IRR, 0.92; 95% CI 0.88–0.97) than for those aged 61–80 years, and for women (IRR, 0.91; 95% CI, 0.87–0.95) and people with dementia (IRR, 0.89; 95% CI, 0.81–0.98). The likelihood of hav
{"title":"Management of people after stroke in 383 Victorian general practices, 2014–2018: analysis of linked stroke registry and general practice data","authors":"Muideen T Olaiya, Joosup Kim, Christopher Pearce, Kiran Bam, Dominique A Cadilhac, Nadine E Andrew, Lauren M Sanders, Amanda G Thrift, Mark R Nelson, Seana Gall, Monique F Kilkenny","doi":"10.5694/mja2.52511","DOIUrl":"10.5694/mja2.52511","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To evaluate the management in Victorian general practice of people who have been hospitalised with stroke or transient ischaemic attacks (TIA).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Study design</h3>\u0000 \u0000 <p>Retrospective observational study; analysis of linked Australian Stroke Clinical Registry (AuSCR) and general practice data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting</h3>\u0000 \u0000 <p>383 general practices in the Eastern Melbourne, South Eastern Melbourne, and Gippsland primary health networks (Victoria), 1 January 2014 – 31 December 2018.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Participants</h3>\u0000 \u0000 <p>Adults who had been hospitalised with acute stroke or TIA and had at least two encounters with the same general practice during the observation period (7–18 months after the acute event).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main outcome measures</h3>\u0000 \u0000 <p>Assessment of cardiometabolic risk factors (blood pressure, serum lipids, blood glucose, urinary protein); prescribing of guideline-recommended prevention medications (blood pressure-, lipid-, or glucose-lowering, antithrombotic agents); attainment of guideline targets for cardiometabolic risk factors at final assessment during observation period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>During 2014–2018, 3376 eligible AuSCR registrants (1465 women, 43.4%) had at least two encounters with one of the 383 general practices during the observation period; median age at stroke onset was 73.9 (interquartile range, 64.4–81.9) years, 737 events were TIAs (21.8%). Blood pressure was assessed in 2718 patients (80.5%), serum lipids in 1830 (54.2%), blood glucose in 1708 (50.6%). Prevention medications were prescribed for 2949 patients (87.4%), including lipid-lowering (2427, 71.9%) and blood pressure-lowering agents (2363, 70.0%). Blood glucose targets had been achieved by 1346 of 1708 patients assessed for this risk factor (78.8%), blood pressure targets by 1935 of 2717 (71.2%), and serum lipid targets by 765 of 1830 (41.8%). The incidence of having risk factors assessed was lower among patients aged 60 years or younger (incidence rate ratio [IRR], 0.97; 95% confidence interval [CI], 0.92–1.03) and those over 80 years of age (IRR, 0.92; 95% CI 0.88–0.97) than for those aged 61–80 years, and for women (IRR, 0.91; 95% CI, 0.87–0.95) and people with dementia (IRR, 0.89; 95% CI, 0.81–0.98). The likelihood of hav","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 10","pages":"546-553"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52511","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>Decades of public health research have taught us that childhood and adolescence are a critical window for investing in the health of populations. Simply put, ensuring young people have a safe and healthy start to life pays dividends across the life course for individuals, their families, and communities. Despite this knowledge, Australia's children and adolescents continue to face enormous threats to their lifelong health and wellbeing. From growing inequality and declining standards of living to the climate crisis and environmental degradation, to conflict, violence and growing mistrust in our institutions and political processes, it is young people who will bear the greatest burden of the most pressing social and economic challenges of our time. Given the central role that the health sector has in responding to and meeting these challenges, this issue of the <i>MJA</i> is dedicated to child and adolescent health.</p><p>The Future Healthy Countdown 2030 aims to drive systemic changes to Australia's policy environments to improve the health and wellbeing of young people and future generations. The second annual series of Countdown articles appears in a supplement to this issue of the <i>MJA</i> (https://www.mja.com.au/journal/2024/221/10/supplement). Building on the breadth of existing work by advocates and experts, the capstone article in the supplement, by Lycett and colleagues (https://doi.org/10.5694/mja2.52494), reports on development of eight policy actions that are most likely to substantially improve health and wellbeing for children and young people by 2030. The authors recommend that Australia: establish a federal Future Generations Commission; address poverty and material deprivation in the first 2000 days of life; expand access to maternal and child health and development home visiting services; implement a dedicated funding model for Aboriginal and Torres Strait Islander community-controlled early years services; properly fund public schools; protect children from the marketing of unhealthy and harmful products; lower the voting age to 16 years; and immediately end all new fossil fuel projects. In recognition of the fact that young people are experts on their own lives and needs, five subsequent articles in the supplement take a deep dive into the importance of young peoples’ meaningful participation in decision-making initiatives, both within and beyond the health sector, to support their health and wellbeing.</p><p>The tendency of adults to make decisions about young people without genuine consideration of their views and preferences is highlighted by the current debate about social media and the merits of age-based restrictions. The relative harms and benefits of social media for the mental health and wellbeing of children and adolescents, including appropriate policy responses, is a valid and important issue. Yet too often, public and political discourse reduces nuanced and at times conflicting evidence to black-and-white judg
{"title":"Intergenerational equity and the health of Australia's young people","authors":"Elizabeth Zuccala, Michael Skilton","doi":"10.5694/mja2.52515","DOIUrl":"10.5694/mja2.52515","url":null,"abstract":"<p>Decades of public health research have taught us that childhood and adolescence are a critical window for investing in the health of populations. Simply put, ensuring young people have a safe and healthy start to life pays dividends across the life course for individuals, their families, and communities. Despite this knowledge, Australia's children and adolescents continue to face enormous threats to their lifelong health and wellbeing. From growing inequality and declining standards of living to the climate crisis and environmental degradation, to conflict, violence and growing mistrust in our institutions and political processes, it is young people who will bear the greatest burden of the most pressing social and economic challenges of our time. Given the central role that the health sector has in responding to and meeting these challenges, this issue of the <i>MJA</i> is dedicated to child and adolescent health.</p><p>The Future Healthy Countdown 2030 aims to drive systemic changes to Australia's policy environments to improve the health and wellbeing of young people and future generations. The second annual series of Countdown articles appears in a supplement to this issue of the <i>MJA</i> (https://www.mja.com.au/journal/2024/221/10/supplement). Building on the breadth of existing work by advocates and experts, the capstone article in the supplement, by Lycett and colleagues (https://doi.org/10.5694/mja2.52494), reports on development of eight policy actions that are most likely to substantially improve health and wellbeing for children and young people by 2030. The authors recommend that Australia: establish a federal Future Generations Commission; address poverty and material deprivation in the first 2000 days of life; expand access to maternal and child health and development home visiting services; implement a dedicated funding model for Aboriginal and Torres Strait Islander community-controlled early years services; properly fund public schools; protect children from the marketing of unhealthy and harmful products; lower the voting age to 16 years; and immediately end all new fossil fuel projects. In recognition of the fact that young people are experts on their own lives and needs, five subsequent articles in the supplement take a deep dive into the importance of young peoples’ meaningful participation in decision-making initiatives, both within and beyond the health sector, to support their health and wellbeing.</p><p>The tendency of adults to make decisions about young people without genuine consideration of their views and preferences is highlighted by the current debate about social media and the merits of age-based restrictions. The relative harms and benefits of social media for the mental health and wellbeing of children and adolescents, including appropriate policy responses, is a valid and important issue. Yet too often, public and political discourse reduces nuanced and at times conflicting evidence to black-and-white judg","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 10","pages":"505"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52515","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kailin Guo, Danica Meas, Dominik Mautner, Fulin Yan, Imeelya Al-Hadaya, Amarina Donohoe-Bales, Lily Teesson, Stephanie R Partridge, Magenta B Simmons, Mariam Mandoh, Emma L Barrett, Maree R Teesson, Scarlett Smout, Marlee Bower
Introduction
Worldwide, young people are increasingly engaged in participation and decision-making initiatives regarding issues that affect their lives through advisory groups, representative councils, advocacy and activism. Emerging evidence suggests that these initiatives may have an impact on the mental health and wellbeing of the youth involved. These guidelines, which are based on a scoping review of global evidence and led by a youth advisory group with lived experience of participation initiatives, summarise evidence-based recommendations for designing and implementing youth participation initiatives that protect the mental health and wellbeing of the young people involved. Development of these guidelines followed methods outlined by the Appraisal of Guidelines for Research and Evaluation (AGREE) instrument and the strength of the evidence behind each recommendation was aligned with the National Health and Medical Research Council Levels of Evidence and recommendation grading system.
Main recommendations
The guidelines include 20 recommendations and three good practice recommendations, addressing the following areas:
prioritising clear and respectful communication;
creating safe and flexible practices for young people;
facilitating social and emotional support;
empowering young people to participate in meaningful and impactful ways; and
supporting young people to develop skills.
Changes in approach as a result of the guidelines
These guidelines are expected to provide cross-sectoral, global groups with the confidence to design and implement youth participation initiatives, using the best-available evidence, in ways that safeguard the mental health of the participating young people.
{"title":"Guidelines for the design and implementation of youth participation initiatives to safeguard mental health and wellbeing","authors":"Kailin Guo, Danica Meas, Dominik Mautner, Fulin Yan, Imeelya Al-Hadaya, Amarina Donohoe-Bales, Lily Teesson, Stephanie R Partridge, Magenta B Simmons, Mariam Mandoh, Emma L Barrett, Maree R Teesson, Scarlett Smout, Marlee Bower","doi":"10.5694/mja2.52485","DOIUrl":"10.5694/mja2.52485","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Worldwide, young people are increasingly engaged in participation and decision-making initiatives regarding issues that affect their lives through advisory groups, representative councils, advocacy and activism. Emerging evidence suggests that these initiatives may have an impact on the mental health and wellbeing of the youth involved. These guidelines, which are based on a scoping review of global evidence and led by a youth advisory group with lived experience of participation initiatives, summarise evidence-based recommendations for designing and implementing youth participation initiatives that protect the mental health and wellbeing of the young people involved. Development of these guidelines followed methods outlined by the Appraisal of Guidelines for Research and Evaluation (AGREE) instrument and the strength of the evidence behind each recommendation was aligned with the National Health and Medical Research Council Levels of Evidence and recommendation grading system.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main recommendations</h3>\u0000 \u0000 <div>The guidelines include 20 recommendations and three good practice recommendations, addressing the following areas:\u0000\u0000 <ul>\u0000 \u0000 <li>prioritising clear and respectful communication;</li>\u0000 \u0000 <li>creating safe and flexible practices for young people;</li>\u0000 \u0000 <li>facilitating social and emotional support;</li>\u0000 \u0000 <li>empowering young people to participate in meaningful and impactful ways; and</li>\u0000 \u0000 <li>supporting young people to develop skills.</li>\u0000 </ul>\u0000 </div>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Changes in approach as a result of the guidelines</h3>\u0000 \u0000 <p>These guidelines are expected to provide cross-sectoral, global groups with the confidence to design and implement youth participation initiatives, using the best-available evidence, in ways that safeguard the mental health of the participating young people.</p>\u0000 </section>\u0000 </div>","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 S10","pages":"S34-S40"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52485","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644455","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alicia Montgomery, Suzy Honniset, Teresa Hall, Santuri Rungan, Ally Drinkwater, Rebecca Bosward, Tammy Meyers Morris, Huei Ming Liu, Valsamma Eapen, John Eastwood, Raghu Lingam, Harriet Hiscock, Susan Woolfenden, Sharon R Goldfeld
<p>There is increasing interest internationally in the potential for integrated care hubs to improve mental health outcomes for children experiencing adversity.<span><sup>1</sup></span> Termed “child and family hubs” throughout this article, these hubs refer to collaborative initiatives integrating health, education and/or social care, typically in one site. In Australia, the 2020 Productivity Commission Mental Health Inquiry identified the need for significant reform, including focus on early intervention and person-centred care in childhood and adolescence, to address the shortcomings of siloed national mental health care systems and to increase accessibility of care for families at greatest risk of experiencing adversity.<span><sup>2</sup></span> Childhood adversity is a broad term used to describe negative early life experiences and circumstances, such as socio-economic disadvantage, abuse, neglect, family violence, parental mental illness, bullying and discrimination.<span><sup>3, 4</sup></span> The cumulative and negative impacts of childhood adversity on intergenerational health and wellbeing are significant, and necessitate a multisectoral response.<span><sup>5</sup></span> This article is part of the 2024 <i>MJA</i> supplement for the Future Healthy Countdown 2030,<span><sup>6</sup></span> which examines how participating affects the health and wellbeing of children, young people and future generations. We look at this from the perspective of a public community paediatric service in metropolitan Sydney, involved in co-designing child and family hubs to deliver health services to families experiencing adversity.</p><p>There are currently over 460 Australian child and family hubs that focus on building connections between existing services to create a “one-stop shop” for families seeking support in relation to health, development and wellbeing.<span><sup>7, 8</sup></span> Although organisational adaptation varies by context (Box 1), several core components of child and family hubs can be identified. These include co-design of hub components with families, non-stigmatising entry, family-centred care, parental capacity building, co-location of services, workforce development, and local leadership.<span><sup>9</sup></span></p><p>To best respond to the needs of local communities, a robust co-design of child and family hubs should involve people with lived and professional experience of health and social care service utilisation and provision. Co-design is a method on the continuum of participatory approaches to service development and evaluation, which are essential for preventing services that fail to engage vulnerable families by not meeting their needs, or by failing to optimise cultural safety.<span><sup>10</sup></span> We define co-design as the “active involvement of a diverse range of participants in exploring, developing, and testing responses to shared challenges”.<span><sup>11</sup></span> Given the increase in utilisation of co-desi
通过相称的普遍性方法18 ，电子枢纽将寻求以最终用户所需的规模和强度提供普遍服务（方框 4）。参与该倡议的许多合作者都参与了温德姆谷（Wyndham Vale）和马里克维尔（Marrickville）儿童与家庭中心的实施和评估。这些地点以及新南威尔士州费尔菲尔德（Fairfield）的第三个地点已被选为电子枢纽的测试地点。以学校为基础的枢纽在全球拥有不断扩大的证据基础，是儿童和家庭获得医疗服务的熟悉而方便的地点。由于社区成员希望通过设在学校的综合 "一站式服务点 "获得医疗服务，因此在南澳大利亚州立卫生署（SLHD）建立了一个校本综合护理试点项目。Yudi Gunyi 学校是一所专门的中学，招收有挑战行为的学生，这些学生无法进入主流学校学习。在这所学校里，Ngaramadhi Space 护理模式是与原住民社区共同设计的，历时十年，旨在提供以儿童和家庭为中心的多学科整体护理（方框 5）。本文介绍了在三种情况下（医疗、教育和数字环境）共同设计儿童与家庭中心的集体经验，其中强调了几项关键经验。在所述的所有中心中，有逆境儿童的家庭都表示需要服务导航和家庭整体支持方面的帮助。尽管这些原则在各中心的实施情况不尽相同，但有逆境生活经历的利益相关者都表示，他们参与服务设计和实施过程非常重要。本文中描述的案例表明，有逆境家庭参与的共同设计是可能的，但具有挑战性。温德姆谷（Wyndham Vale）和马里克维尔（Marrickville）的儿童与家庭中心的共同设计遵循了一个明确的理论框架内的分阶段方法。对儿童和家庭中心的正式评估正在进行中，但对温德姆谷采用的共同设计过程的稳健方法的价值进行了专门评估，使用的是公众和患者参与评估工具（PPEET）32 。人们发现，不同背景的共同设计参与者从合作以产生相互学习的过程中获得了满足感，并认为该过程增加了当地对中心的信任和所有权。在共同设计 "Ngaramadhi 空间 "校本中心的过程中，信任和社区自主权的重要性得到了重 申。该计划的社区驱动性质意味着，在研究框架内，行动（即对高需求学生的紧急评估）优先于正式的共同设计。通过倾听社区的声音，采取循序渐进的实施方法，我们努力赢得社区、学生和家庭的信任。随着信任度的提高，我们制定了让家庭参与模式改进的措施；例如，消费者满意度调查和获得伦理批准的正式定性研究评估。9 与社区建立信任和根深蒂固的联系的过程历时数年，随着时间的推移，社区利益相关者和服务提供者都发生了变化，这一过程仍在继续。这里介绍的以健康为基础的中心和 eHub 表明这是可以实现的，而 Ngaramadhi 空间的经验则表明了社区代表的重要性，在这种情况下，非常重要的护理需求阻碍了照顾者直接参与共同设计。正如温德姆谷儿童与家庭中心（Wyndham Vale Child and Family Hub）的发展所表明的那样，儿童和年轻人可以直接参与为经历逆境的家庭提供服务的共同设计。然而，在这种情况下，儿童与成人之间的权力差异会被放大，因此必须采取反思性的方法。必须考虑到与儿童发展年龄相适应的沟通方式和适合儿童的环境。正如温德姆谷中心（Wyndham Vale hub）所展示的那样，涉及参与性艺术活动的创造性方法可能会很有用。
{"title":"Co-designing integrated child and family hubs for families experiencing adversity","authors":"Alicia Montgomery, Suzy Honniset, Teresa Hall, Santuri Rungan, Ally Drinkwater, Rebecca Bosward, Tammy Meyers Morris, Huei Ming Liu, Valsamma Eapen, John Eastwood, Raghu Lingam, Harriet Hiscock, Susan Woolfenden, Sharon R Goldfeld","doi":"10.5694/mja2.52486","DOIUrl":"10.5694/mja2.52486","url":null,"abstract":"<p>There is increasing interest internationally in the potential for integrated care hubs to improve mental health outcomes for children experiencing adversity.<span><sup>1</sup></span> Termed “child and family hubs” throughout this article, these hubs refer to collaborative initiatives integrating health, education and/or social care, typically in one site. In Australia, the 2020 Productivity Commission Mental Health Inquiry identified the need for significant reform, including focus on early intervention and person-centred care in childhood and adolescence, to address the shortcomings of siloed national mental health care systems and to increase accessibility of care for families at greatest risk of experiencing adversity.<span><sup>2</sup></span> Childhood adversity is a broad term used to describe negative early life experiences and circumstances, such as socio-economic disadvantage, abuse, neglect, family violence, parental mental illness, bullying and discrimination.<span><sup>3, 4</sup></span> The cumulative and negative impacts of childhood adversity on intergenerational health and wellbeing are significant, and necessitate a multisectoral response.<span><sup>5</sup></span> This article is part of the 2024 <i>MJA</i> supplement for the Future Healthy Countdown 2030,<span><sup>6</sup></span> which examines how participating affects the health and wellbeing of children, young people and future generations. We look at this from the perspective of a public community paediatric service in metropolitan Sydney, involved in co-designing child and family hubs to deliver health services to families experiencing adversity.</p><p>There are currently over 460 Australian child and family hubs that focus on building connections between existing services to create a “one-stop shop” for families seeking support in relation to health, development and wellbeing.<span><sup>7, 8</sup></span> Although organisational adaptation varies by context (Box 1), several core components of child and family hubs can be identified. These include co-design of hub components with families, non-stigmatising entry, family-centred care, parental capacity building, co-location of services, workforce development, and local leadership.<span><sup>9</sup></span></p><p>To best respond to the needs of local communities, a robust co-design of child and family hubs should involve people with lived and professional experience of health and social care service utilisation and provision. Co-design is a method on the continuum of participatory approaches to service development and evaluation, which are essential for preventing services that fail to engage vulnerable families by not meeting their needs, or by failing to optimise cultural safety.<span><sup>10</sup></span> We define co-design as the “active involvement of a diverse range of participants in exploring, developing, and testing responses to shared challenges”.<span><sup>11</sup></span> Given the increase in utilisation of co-desi","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 S10","pages":"S41-S47"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52486","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644451","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>What is it like to be growing up in Australia? Although Australia is one of the wealthiest countries in the world, health and wellbeing measures are not only stalling for many children and young people, but they are actually moving backwards in some domains.<span><sup>1</sup></span></p><p>This is because the safety, health and wellbeing of children are not a national priority and there is a lack of government accountability for evidence-based reform. This was demonstrated in an analysis of 12 years of Royal Commissions and inquiries, which found thousands of recommendations repeated over this time.<span><sup>2</sup></span></p><p>Regarded as the responsibility of states and territories, unlike other important issues, children appear nowhere on the list of priorities for the National Cabinet. It is a choice to not address the social determinants of health and wellbeing. We wait until a crisis or a crime compels a reaction. Politics is getting in the way of prevention, leaving our most vulnerable children behind as victims of “federation failure”.<span><sup>2</sup></span></p><p>At its core, this tragedy is due to a lack of respect for the human rights of children and young people. Despite ratifying the United Nations Convention on the Rights of the Child in 1990 (https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-child), we have failed to incorporate their rights into Australia's laws.</p><p>Rather than centring and respecting the human rights of children and young people, Australia relies on the deeply flawed trickle-down approach, allowing policy to be dominated by the limited concerns of adults. This compromises the future wellbeing of children and of our communities, as well as limiting the health, development, learning and wellbeing of too many children right now. To turn this around, we need to look closely at the evidence and work together across the federation, making child safety, health and wellbeing a priority for the National Cabinet.</p><p>Health is inextricably linked to environment. Since the framing of social determinants of health was first introduced,<span><sup>3</sup></span> the concept has expanded to include political,<span><sup>4</sup></span> commercial,<span><sup>5</sup></span> digital<span><sup>6</sup></span> and environmental determinants of health,<span><sup>7</sup></span> among other framings. The human world is complex, incorporating multiple spheres, all of which influence health and wellbeing. The greatest burden from unhealthy environments rests on the young.</p><p>The Future Healthy Countdown 2030 documents what is going wrong for children, young people and future generations and, also, what needs urgent action to turn things around. The Countdown was introduced in a 2023 supplement published in the <i>Medical Journal of Australia</i>.<span><sup>1</sup></span> Seven domains capture the complex forces that influence physical health, mental health and wellbeing for children, young people an
{"title":"Future Healthy Countdown 2030: from passive trickle-down to active participation for improved health and wellbeing of children, young people and future generations","authors":"Kevin Kapeke, Anne Hollonds, Susan Maury","doi":"10.5694/mja2.52491","DOIUrl":"10.5694/mja2.52491","url":null,"abstract":"<p>What is it like to be growing up in Australia? Although Australia is one of the wealthiest countries in the world, health and wellbeing measures are not only stalling for many children and young people, but they are actually moving backwards in some domains.<span><sup>1</sup></span></p><p>This is because the safety, health and wellbeing of children are not a national priority and there is a lack of government accountability for evidence-based reform. This was demonstrated in an analysis of 12 years of Royal Commissions and inquiries, which found thousands of recommendations repeated over this time.<span><sup>2</sup></span></p><p>Regarded as the responsibility of states and territories, unlike other important issues, children appear nowhere on the list of priorities for the National Cabinet. It is a choice to not address the social determinants of health and wellbeing. We wait until a crisis or a crime compels a reaction. Politics is getting in the way of prevention, leaving our most vulnerable children behind as victims of “federation failure”.<span><sup>2</sup></span></p><p>At its core, this tragedy is due to a lack of respect for the human rights of children and young people. Despite ratifying the United Nations Convention on the Rights of the Child in 1990 (https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-child), we have failed to incorporate their rights into Australia's laws.</p><p>Rather than centring and respecting the human rights of children and young people, Australia relies on the deeply flawed trickle-down approach, allowing policy to be dominated by the limited concerns of adults. This compromises the future wellbeing of children and of our communities, as well as limiting the health, development, learning and wellbeing of too many children right now. To turn this around, we need to look closely at the evidence and work together across the federation, making child safety, health and wellbeing a priority for the National Cabinet.</p><p>Health is inextricably linked to environment. Since the framing of social determinants of health was first introduced,<span><sup>3</sup></span> the concept has expanded to include political,<span><sup>4</sup></span> commercial,<span><sup>5</sup></span> digital<span><sup>6</sup></span> and environmental determinants of health,<span><sup>7</sup></span> among other framings. The human world is complex, incorporating multiple spheres, all of which influence health and wellbeing. The greatest burden from unhealthy environments rests on the young.</p><p>The Future Healthy Countdown 2030 documents what is going wrong for children, young people and future generations and, also, what needs urgent action to turn things around. The Countdown was introduced in a 2023 supplement published in the <i>Medical Journal of Australia</i>.<span><sup>1</sup></span> Seven domains capture the complex forces that influence physical health, mental health and wellbeing for children, young people an","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 S10","pages":"S3-S5"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52491","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644453","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>Ensuring the health and wellbeing of children is a fundamental societal goal, which is best achieved when children are connected to their communities, have opportunities for meaningful participation, and enjoy strong and supportive relationships across generations, within and beyond their families. This means investing in individual children and families and in their communities. It also means creating communities that are inclusive of children and actively providing pathways for children to participate in a range of social and civic activities. The purpose of this article is to highlight the relationship between participation, health and wellbeing, for children aged in the middle years.</p><p>Middle childhood, defined here as between six and 12 years of age, corresponds with primary school. But children's lives are characterised by more than school. During middle childhood, children begin to gain independence while remaining strongly connected to their families, yet children's place is often understood to be either the family or school. Limiting children's domains to family and school has resulted in the privatisation of childhood and in their exclusion from public spaces, with deleterious impacts on social relationships.<span><sup>1</sup></span> Loneliness among children in middle childhood may result from a lack of social connection and has serious implications for health and wellbeing.<span><sup>2</sup></span> These concerns are exacerbated in a context of polycrisis encompassing challenges to children's wellbeing and mental health, from climate change to conflict, failing systems across welfare, education and health care and declining standards of living.<span><sup>3</sup></span> Given the significance of middle childhood and complexity within which children live, there has been insufficient policy consideration of children's lives beyond school and family. Yet engagement with community, beyond school and family, is essential for children's sense of belonging, and their overall health and wellbeing.<span><sup>4</sup></span> Without policy support, children's engagement with community is especially challenging for those whose families are under stress or experiencing financial hardship.</p><p>Our argument here is twofold. First there is a need for policies and services to be more responsive to middle childhood. In Australia, there is a strong and justifiable focus on the early years. Yet, as we create the conditions in which children and their families can thrive during the early years of life, we need to take care not to create a policy and service cliff as children move into middle childhood. Our second argument is that efforts to foster children's health and wellbeing must consider how to build child-inclusive communities that are welcoming to children and in which children can actively participate in ways that are meaningful to them. The Future Healthy Countdown 2030<span><sup>5</sup></span> presents an opportunity to advocate for chil
{"title":"Wellbeing, participation and connection in the middle years of childhood","authors":"Sharon Bessell, Tim Moore, Gerry Redmond","doi":"10.5694/mja2.52495","DOIUrl":"10.5694/mja2.52495","url":null,"abstract":"<p>Ensuring the health and wellbeing of children is a fundamental societal goal, which is best achieved when children are connected to their communities, have opportunities for meaningful participation, and enjoy strong and supportive relationships across generations, within and beyond their families. This means investing in individual children and families and in their communities. It also means creating communities that are inclusive of children and actively providing pathways for children to participate in a range of social and civic activities. The purpose of this article is to highlight the relationship between participation, health and wellbeing, for children aged in the middle years.</p><p>Middle childhood, defined here as between six and 12 years of age, corresponds with primary school. But children's lives are characterised by more than school. During middle childhood, children begin to gain independence while remaining strongly connected to their families, yet children's place is often understood to be either the family or school. Limiting children's domains to family and school has resulted in the privatisation of childhood and in their exclusion from public spaces, with deleterious impacts on social relationships.<span><sup>1</sup></span> Loneliness among children in middle childhood may result from a lack of social connection and has serious implications for health and wellbeing.<span><sup>2</sup></span> These concerns are exacerbated in a context of polycrisis encompassing challenges to children's wellbeing and mental health, from climate change to conflict, failing systems across welfare, education and health care and declining standards of living.<span><sup>3</sup></span> Given the significance of middle childhood and complexity within which children live, there has been insufficient policy consideration of children's lives beyond school and family. Yet engagement with community, beyond school and family, is essential for children's sense of belonging, and their overall health and wellbeing.<span><sup>4</sup></span> Without policy support, children's engagement with community is especially challenging for those whose families are under stress or experiencing financial hardship.</p><p>Our argument here is twofold. First there is a need for policies and services to be more responsive to middle childhood. In Australia, there is a strong and justifiable focus on the early years. Yet, as we create the conditions in which children and their families can thrive during the early years of life, we need to take care not to create a policy and service cliff as children move into middle childhood. Our second argument is that efforts to foster children's health and wellbeing must consider how to build child-inclusive communities that are welcoming to children and in which children can actively participate in ways that are meaningful to them. The Future Healthy Countdown 2030<span><sup>5</sup></span> presents an opportunity to advocate for chil","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 S10","pages":"S23-S25"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52495","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>In Australia, 24.4% of newborn Aboriginal or Torres Strait Islander infants were admitted to neonatal intensive care units (NICUs) or special care nurseries during 2022, compared with 16.3% of non-Indigenous infants.<span><sup>1</sup></span> For Aboriginal and Torres Strait Islander people, culture is a protective factor for strong health and wellbeing,<span><sup>2</sup></span> but neonatal care can disrupt usual parent–infant care and cultural care practices. Understanding the characteristics of Aboriginal and Torres Strait Islander families receiving neonatal care is important for supporting their needs. Routinely collected national and state data do not typically provide detailed information about Aboriginal and Torres Strait Islander infants admitted to NICUs,<span><sup>1</sup></span> leading to gaps in knowledge about how to optimise care, particularly at the local level.</p><p>In this article, we describe the characteristics of admissions of Aboriginal and Torres Strait Islander infants to the John Hunter Children's Hospital NICU (Newcastle, Hunter New England Local Health District, New South Wales) in order to identify areas for potential improvement in care delivery. We undertook a retrospective medical record audit, using Indigenous quantitative methodologies<span><sup>3</sup></span> that drew on the lead author's Indigenous standpoint and social and cultural positioning as a NICU nurse and Aboriginal person. Data for all infants admitted during 1 January 2016 – 31 December 2021 were included. De-identified data were extracted from the Neonatal Intensive and Special Care Units’ Data Registry (NICUS)<span><sup>4</sup></span> and iPM patient administration system. Data are summarised as numbers and proportions with 95% confidence intervals (CIs), or as means with 95% CIs. Mean length of NICU stay was calculated from Kaplan–Meier survival curves, with mode of separation or death as the censor indicator. Rurality was determined from the mothers’ postcodes using the Monash Modified Model (MMM).<span><sup>5</sup></span> Analysis was undertaken in R 4.3.0 (R Foundation for Statistical Computing). The human research ethics committees of the Aboriginal Health and Medical Research Council of New South Wales (AH&MRC 993/14), the Hunter New England Local Health District (HNEHREC 13/12/11/4.11), and the University of Newcastle (H-2014-0035) approved the study, which was developed and conducted with ongoing consultation and collaboration with Aboriginal communities, organisations, and individuals. We report our study according to the CONSIDER statement (Supporting Information).<span><sup>6</sup></span></p><p>A total of 7058 NICU admissions during 2016–2021 were identified, including 1385 of Aboriginal or Torres Strait Islander infants (19.6%; 1266 unique infants). In this article we report data only for Aboriginal and Torres Strait Islander infants. The mean gestation period was 34.9 weeks (95% CI, 34.6–35.1 weeks), the mean birthweight was 249
{"title":"Aboriginal and Torres Strait Islander infants admitted to the Hunter New England neonatal intensive care unit, 2016–2021: a retrospective medical record audit","authors":"Jessica Bennett, Michelle Kennedy, Jamie Bryant, Amanual Mersha, Larissa Korostenski, Michelle Stubbs, Justine Parsons, Luke Wakely","doi":"10.5694/mja2.52533","DOIUrl":"10.5694/mja2.52533","url":null,"abstract":"<p>In Australia, 24.4% of newborn Aboriginal or Torres Strait Islander infants were admitted to neonatal intensive care units (NICUs) or special care nurseries during 2022, compared with 16.3% of non-Indigenous infants.<span><sup>1</sup></span> For Aboriginal and Torres Strait Islander people, culture is a protective factor for strong health and wellbeing,<span><sup>2</sup></span> but neonatal care can disrupt usual parent–infant care and cultural care practices. Understanding the characteristics of Aboriginal and Torres Strait Islander families receiving neonatal care is important for supporting their needs. Routinely collected national and state data do not typically provide detailed information about Aboriginal and Torres Strait Islander infants admitted to NICUs,<span><sup>1</sup></span> leading to gaps in knowledge about how to optimise care, particularly at the local level.</p><p>In this article, we describe the characteristics of admissions of Aboriginal and Torres Strait Islander infants to the John Hunter Children's Hospital NICU (Newcastle, Hunter New England Local Health District, New South Wales) in order to identify areas for potential improvement in care delivery. We undertook a retrospective medical record audit, using Indigenous quantitative methodologies<span><sup>3</sup></span> that drew on the lead author's Indigenous standpoint and social and cultural positioning as a NICU nurse and Aboriginal person. Data for all infants admitted during 1 January 2016 – 31 December 2021 were included. De-identified data were extracted from the Neonatal Intensive and Special Care Units’ Data Registry (NICUS)<span><sup>4</sup></span> and iPM patient administration system. Data are summarised as numbers and proportions with 95% confidence intervals (CIs), or as means with 95% CIs. Mean length of NICU stay was calculated from Kaplan–Meier survival curves, with mode of separation or death as the censor indicator. Rurality was determined from the mothers’ postcodes using the Monash Modified Model (MMM).<span><sup>5</sup></span> Analysis was undertaken in R 4.3.0 (R Foundation for Statistical Computing). The human research ethics committees of the Aboriginal Health and Medical Research Council of New South Wales (AH&MRC 993/14), the Hunter New England Local Health District (HNEHREC 13/12/11/4.11), and the University of Newcastle (H-2014-0035) approved the study, which was developed and conducted with ongoing consultation and collaboration with Aboriginal communities, organisations, and individuals. We report our study according to the CONSIDER statement (Supporting Information).<span><sup>6</sup></span></p><p>A total of 7058 NICU admissions during 2016–2021 were identified, including 1385 of Aboriginal or Torres Strait Islander infants (19.6%; 1266 unique infants). In this article we report data only for Aboriginal and Torres Strait Islander infants. The mean gestation period was 34.9 weeks (95% CI, 34.6–35.1 weeks), the mean birthweight was 249","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"222 1","pages":"47-48"},"PeriodicalIF":6.7,"publicationDate":"2024-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52533","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648639","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<p>A 76-year-old female patient was urgently referred to the endocrine clinic for suppressed morning serum cortisol levels (< 28 nmol/L; reference range [RR], 138–650 nmol/L). She reported fatigue, limb bruising, hair thinning, mood irritability and 3–4 kg weight loss over the past year.</p><p>Her medical history included oral lichen planus diagnosed two years prior, with symptoms of dry mouth and discomfort, along with osteopenia and facial dermatitis. Regular medications included vaginal oestrogen, calcium carbonate, vitamin D and vitamin B complex. She denied glucocorticoid or opioid use.</p><p>The patient disclosed the continuous use of “magic mouthwash”, a compounded mouthwash prescribed by her oral medicine specialist for the past 12 months, with clinical improvement. Ingredients from the prescription label (Box 1) included clobetasol propionate, which is a potent topical corticosteroid. The mouthwash was used as directed without accidental ingestion.</p><p>Examination revealed signs of Cushing syndrome, including facial swelling, skin thinning, proximal muscle weakness, and bruising. Her oral cavity showed mild erythema and reticular white striae involving the buccal mucosae and ventral tongue, with no ulcerations or erosions.</p><p>Laboratory tests confirmed secondary adrenal insufficiency with cortisol below 28 nmol/L and adrenocorticotropic hormone (ACTH) below 1.1 pmol/L (RR, <12.1 pmol/L). Other pituitary hormones were normal. Short synacthen test (SST) indicated inadequate response with peak cortisol 125 nmol/L at 60 minutes (RR, >420 nmol/L at the Royal Prince Alfred Hospital).</p><p>The patient was commenced on oral hydrocortisone 10 mg daily and referred to immunology for consideration of a steroid-sparing agent. After transitioning from the magic mouthwash to the steroid-sparing agent, the hydrocortisone dosage was increased to 20 mg in the morning and 10 mg in the early afternoon. The patient's symptoms improved, and hydrocortisone was tapered to 10 mg twice daily three weeks later.</p><p>A follow-up evaluation two months after stopping the magic mouthwash demonstrated recovery of the hypothalamic–pituitary–adrenal (HPA) axis, with morning cortisol 342 nmol/L and paired ACTH 9.2 pmol/L. The patient was advised to stop the hydrocortisone 10 mg twice daily, and an SST performed ten days later confirmed an excellent response with peak cortisol 599 nmol/L at 60 minutes. Oral lichen planus remained well managed throughout. Biochemistry trends are shown in Box 2.</p><p>This case underscores the need for vigilance in recognising the potential systemic absorption and adrenal suppressive effects of topical corticosteroids, even when used as part of dental treatments. Absorption was likely due to previous mucosal damage that may have healed with ongoing mouthwash use.<span><sup>1</sup></span></p><p>Magic mouthwash is a prescription mouthwash that has gained popularity for the treatment of recurrent aphthous ulcers and oral mucosi
{"title":"Beware of the rinse: magic mouthwash as a rare cause of iatrogenic Cushing syndrome and secondary adrenal insufficiency","authors":"Mike Lin, Lisa Horgan, Albert Hsieh","doi":"10.5694/mja2.52523","DOIUrl":"10.5694/mja2.52523","url":null,"abstract":"<p>A 76-year-old female patient was urgently referred to the endocrine clinic for suppressed morning serum cortisol levels (< 28 nmol/L; reference range [RR], 138–650 nmol/L). She reported fatigue, limb bruising, hair thinning, mood irritability and 3–4 kg weight loss over the past year.</p><p>Her medical history included oral lichen planus diagnosed two years prior, with symptoms of dry mouth and discomfort, along with osteopenia and facial dermatitis. Regular medications included vaginal oestrogen, calcium carbonate, vitamin D and vitamin B complex. She denied glucocorticoid or opioid use.</p><p>The patient disclosed the continuous use of “magic mouthwash”, a compounded mouthwash prescribed by her oral medicine specialist for the past 12 months, with clinical improvement. Ingredients from the prescription label (Box 1) included clobetasol propionate, which is a potent topical corticosteroid. The mouthwash was used as directed without accidental ingestion.</p><p>Examination revealed signs of Cushing syndrome, including facial swelling, skin thinning, proximal muscle weakness, and bruising. Her oral cavity showed mild erythema and reticular white striae involving the buccal mucosae and ventral tongue, with no ulcerations or erosions.</p><p>Laboratory tests confirmed secondary adrenal insufficiency with cortisol below 28 nmol/L and adrenocorticotropic hormone (ACTH) below 1.1 pmol/L (RR, <12.1 pmol/L). Other pituitary hormones were normal. Short synacthen test (SST) indicated inadequate response with peak cortisol 125 nmol/L at 60 minutes (RR, >420 nmol/L at the Royal Prince Alfred Hospital).</p><p>The patient was commenced on oral hydrocortisone 10 mg daily and referred to immunology for consideration of a steroid-sparing agent. After transitioning from the magic mouthwash to the steroid-sparing agent, the hydrocortisone dosage was increased to 20 mg in the morning and 10 mg in the early afternoon. The patient's symptoms improved, and hydrocortisone was tapered to 10 mg twice daily three weeks later.</p><p>A follow-up evaluation two months after stopping the magic mouthwash demonstrated recovery of the hypothalamic–pituitary–adrenal (HPA) axis, with morning cortisol 342 nmol/L and paired ACTH 9.2 pmol/L. The patient was advised to stop the hydrocortisone 10 mg twice daily, and an SST performed ten days later confirmed an excellent response with peak cortisol 599 nmol/L at 60 minutes. Oral lichen planus remained well managed throughout. Biochemistry trends are shown in Box 2.</p><p>This case underscores the need for vigilance in recognising the potential systemic absorption and adrenal suppressive effects of topical corticosteroids, even when used as part of dental treatments. Absorption was likely due to previous mucosal damage that may have healed with ongoing mouthwash use.<span><sup>1</sup></span></p><p>Magic mouthwash is a prescription mouthwash that has gained popularity for the treatment of recurrent aphthous ulcers and oral mucosi","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"591-593"},"PeriodicalIF":6.7,"publicationDate":"2024-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52523","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142623328","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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