<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}
Christian P Pappas, Timothy R Holmes, Minas T Coroneo
<p><span>To the Editor:</span> Pharmacist prescribing initiatives in Australia are experiencing unprecedented popularity among state law makers, while community concerns regarding access to affordable general practice are increasing. Following the statewide roll-out of pharmacist prescribing for uncomplicated urinary tract infections among female patients aged 18–65 years, the New South Wales Pharmacy Trial continues to expand.<span><sup>1</sup></span> From 19 July 2024, participating pharmacists are authorised to assess and treat adults with common dermatological conditions, including herpes zoster (shingles), atopic dermatitis, impetigo, and plaque psoriasis, after undertaking a series of training modules.<span><sup>2</sup></span> The trial closes in February 2025, or when the maximum number of trial-supported consultations has been reached.<span><sup>2</sup></span> A similar 12-month pilot is currently underway in Victoria.<span><sup>3</sup></span></p><p>Although protocolised health care can prevent deviations from evidence-based care, robust clinical standards are required. The NSW trial's clinical practice guidelines for herpes zoster appropriately identify indications for immediate referral to a general practitioner or emergency department in the presence of complications, including postherpetic neuralgia, herpes zoster ophthalmicus, herpes zoster meningoencephalitis, and herpes zoster oticus (Ramsay Hunt syndrome). Despite correctly noting that “vesicles on the nose have been found to be predictive of eye involvement,” the guidelines erroneously attribute these findings (Hutchinson sign) to herpes zoster oticus, not herpes zoster ophthalmicus.<span><sup>4, 5</sup></span></p><p>Eponymously named for the English surgeon and ophthalmologist Sir Jonathan Hutchinson in 1864,<span><sup>6</sup></span> Hutchinson sign denotes cutaneous involvement of the lateral dorsum, tip or root of the nose. Attributed to varicella zoster virus reactivation within the infratrochlear and external nasal nerves, terminal divisions of the nasociliary nerve and ophthalmic nerve, Hutchinson sign strongly suggests a diagnosis of herpes zoster ophthalmicus.<span><sup>7</sup></span> It is a powerful predictor of varicella zoster virus keratitis, uveitis, and corneal denervation,<span><sup>8</sup></span> and is often taken by general practitioners as an indication for prompt ophthalmic referral.<span><sup>9</sup></span> In contrast, Ramsay Hunt syndrome is characterised by viral re-activation within the geniculate ganglion and is associated with ipsilateral otalgia, hearing loss, peripheral facial nerve palsy, and herpetiform rash within the external auditory canal, pinna, and oral mucosa.<span><sup>10</sup></span> The current clinical practice guidelines risk misdiagnosis between two anatomically distinct entities, with potential consequences, including inappropriate patient referral and delayed treatment initiation, which would not serve to allay community concerns reg
{"title":"The New South Wales Pharmacy Trial for herpes zoster: on the nose?","authors":"Christian P Pappas, Timothy R Holmes, Minas T Coroneo","doi":"10.5694/mja2.52531","DOIUrl":"10.5694/mja2.52531","url":null,"abstract":"<p><span>To the Editor:</span> Pharmacist prescribing initiatives in Australia are experiencing unprecedented popularity among state law makers, while community concerns regarding access to affordable general practice are increasing. Following the statewide roll-out of pharmacist prescribing for uncomplicated urinary tract infections among female patients aged 18–65 years, the New South Wales Pharmacy Trial continues to expand.<span><sup>1</sup></span> From 19 July 2024, participating pharmacists are authorised to assess and treat adults with common dermatological conditions, including herpes zoster (shingles), atopic dermatitis, impetigo, and plaque psoriasis, after undertaking a series of training modules.<span><sup>2</sup></span> The trial closes in February 2025, or when the maximum number of trial-supported consultations has been reached.<span><sup>2</sup></span> A similar 12-month pilot is currently underway in Victoria.<span><sup>3</sup></span></p><p>Although protocolised health care can prevent deviations from evidence-based care, robust clinical standards are required. The NSW trial's clinical practice guidelines for herpes zoster appropriately identify indications for immediate referral to a general practitioner or emergency department in the presence of complications, including postherpetic neuralgia, herpes zoster ophthalmicus, herpes zoster meningoencephalitis, and herpes zoster oticus (Ramsay Hunt syndrome). Despite correctly noting that “vesicles on the nose have been found to be predictive of eye involvement,” the guidelines erroneously attribute these findings (Hutchinson sign) to herpes zoster oticus, not herpes zoster ophthalmicus.<span><sup>4, 5</sup></span></p><p>Eponymously named for the English surgeon and ophthalmologist Sir Jonathan Hutchinson in 1864,<span><sup>6</sup></span> Hutchinson sign denotes cutaneous involvement of the lateral dorsum, tip or root of the nose. Attributed to varicella zoster virus reactivation within the infratrochlear and external nasal nerves, terminal divisions of the nasociliary nerve and ophthalmic nerve, Hutchinson sign strongly suggests a diagnosis of herpes zoster ophthalmicus.<span><sup>7</sup></span> It is a powerful predictor of varicella zoster virus keratitis, uveitis, and corneal denervation,<span><sup>8</sup></span> and is often taken by general practitioners as an indication for prompt ophthalmic referral.<span><sup>9</sup></span> In contrast, Ramsay Hunt syndrome is characterised by viral re-activation within the geniculate ganglion and is associated with ipsilateral otalgia, hearing loss, peripheral facial nerve palsy, and herpetiform rash within the external auditory canal, pinna, and oral mucosa.<span><sup>10</sup></span> The current clinical practice guidelines risk misdiagnosis between two anatomically distinct entities, with potential consequences, including inappropriate patient referral and delayed treatment initiation, which would not serve to allay community concerns reg","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"632"},"PeriodicalIF":6.7,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52531","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142623332","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}
Steve Kisely, Rebecca Seth, Susan J Jordan, Bradley Kendall, Dan J Siskind, Grant Sara, Justin Chapman, Lisa Brophy, David M Lawrence
<div> <section> <h3> Objective</h3> <p>To compare rates of participation in the National Bowel Cancer Screening Program (NBCSP) and follow-up for people with severe mental illness with those for people without severe mental illness or not prescribed antidepressants.</p> </section> <section> <h3> Study design</h3> <p>Retrospective cohort study; analysis of de-identified linked NBCSP, Pharmaceutical Benefits Scheme (PBS), and Medicare Benefits Schedule (MBS) data.</p> </section> <section> <h3> Setting</h3> <p>Australia, 2006–2019.</p> </section> <section> <h3> Participants</h3> <p>People aged 50–74 years (NBCSP-eligible) with severe mental illness, defined as those dispensed two or more prescriptions for second generation antipsychotics or for lithium (PBS data), and a random sample of people aged 50–74 years eligible for Medicare-subsidised services but never prescribed psychotropic medications (antipsychotics, lithium, antidepressants).</p> </section> <section> <h3> Main outcome measures</h3> <p>NBCSP participation (returned faecal occult blood test sample), valid test result, positive test result, and follow-up colonoscopy rates.</p> </section> <section> <h3> Results</h3> <p>A total of 119 475 people with severe mental illness and 1 090 574 control group people were included in our analyses. The proportion of women was larger in the severe mental illness group (51.3%) than the control group (48.7%), as were the proportions who lived in inner regional areas (23.5% <i>v</i> 19.1%) or in areas in the lowest socio-economic quintile (21.8% <i>v</i> 14.7%). The NBCSP participation rate was lower among people with severe mental illness (adjusted incidence rate ratio [IRR], 0.70; 95% confidence interval [CI], 0.69–0.84). The proportion of valid test results was smaller for people with severe mental illness (95.9% <i>v</i> 98.7%; adjusted IRR, 0.97; 95% CI, 0.96–0.99), and the positive test result proportion larger (12.3% <i>v</i> 6.6%; adjusted IRR, 2.01; 95% CI, 1.94–2.09). The proportion of positive test results followed by colonoscopy was smaller for people with severe mental illness (71.7% <i>v</i> 82.6%; adjusted IRR, 0.88; 95% CI, 0.85–0.92).</p> </section> <section> <h3> Conclusions</h3> <p>People with severe mental illness were less likely to part
{"title":"Participation in the National Bowel Cancer Screening Program by people with severe mental illness, Australia, 2006–2019: a national data linkage study","authors":"Steve Kisely, Rebecca Seth, Susan J Jordan, Bradley Kendall, Dan J Siskind, Grant Sara, Justin Chapman, Lisa Brophy, David M Lawrence","doi":"10.5694/mja2.52521","DOIUrl":"10.5694/mja2.52521","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To compare rates of participation in the National Bowel Cancer Screening Program (NBCSP) and follow-up for people with severe mental illness with those for people without severe mental illness or not prescribed antidepressants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Study design</h3>\u0000 \u0000 <p>Retrospective cohort study; analysis of de-identified linked NBCSP, Pharmaceutical Benefits Scheme (PBS), and Medicare Benefits Schedule (MBS) data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting</h3>\u0000 \u0000 <p>Australia, 2006–2019.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Participants</h3>\u0000 \u0000 <p>People aged 50–74 years (NBCSP-eligible) with severe mental illness, defined as those dispensed two or more prescriptions for second generation antipsychotics or for lithium (PBS data), and a random sample of people aged 50–74 years eligible for Medicare-subsidised services but never prescribed psychotropic medications (antipsychotics, lithium, antidepressants).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main outcome measures</h3>\u0000 \u0000 <p>NBCSP participation (returned faecal occult blood test sample), valid test result, positive test result, and follow-up colonoscopy rates.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 119 475 people with severe mental illness and 1 090 574 control group people were included in our analyses. The proportion of women was larger in the severe mental illness group (51.3%) than the control group (48.7%), as were the proportions who lived in inner regional areas (23.5% <i>v</i> 19.1%) or in areas in the lowest socio-economic quintile (21.8% <i>v</i> 14.7%). The NBCSP participation rate was lower among people with severe mental illness (adjusted incidence rate ratio [IRR], 0.70; 95% confidence interval [CI], 0.69–0.84). The proportion of valid test results was smaller for people with severe mental illness (95.9% <i>v</i> 98.7%; adjusted IRR, 0.97; 95% CI, 0.96–0.99), and the positive test result proportion larger (12.3% <i>v</i> 6.6%; adjusted IRR, 2.01; 95% CI, 1.94–2.09). The proportion of positive test results followed by colonoscopy was smaller for people with severe mental illness (71.7% <i>v</i> 82.6%; adjusted IRR, 0.88; 95% CI, 0.85–0.92).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>People with severe mental illness were less likely to part","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"617-622"},"PeriodicalIF":6.7,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11625528/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142623331","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}
Pat Dudgeon (Bardi), Helen Milroy (Palyku), Belle Selkirk (Noongar), Ashleigh Wright (Nunga), Kahli Regan (Wongi and Noongar), Shraddha Kashyap, Rama Agung-Igusti, Joanna Alexi, Abigail Bray, Joan Chan, Ee Pin Chang, Sze Wing Georgiana Cheuk, Jemma Collova, Kate Derry, Chontel Gibson (Gamilaraay)
<p>The authorship order for this article was led by and decided by Pat Dudgeon and Helen Milroy, based on work conducted within and reported by the team. Before that decision, each team member was provided an opportunity to write a summary of their contributions to the article, as well as recognise other authors’ roles and responsibilities in the process. The authors’ contributions, as per the CRediT for this article are as follows, noting that only the relevant roles from CRediT are included: Conceptualisation: Pat Dudgeon (PD) and Helen Milroy (HM) provided leadership for the development and application of Indigenous authorship principles, including holding space for conversations and activities to support the learning within the team. The remaining authors learn, practice and support the application of Indigenous authorship principles. Chontel Gibson (CG) and Shraddha Kashyap (SK) led the conceptualisation of the article in consultation with the remaining authors. Methodology: CG led the methodological approach to design and write the article. HM and PD provided leadership and advice. Supervision: CG and SK provided everyday supervision and guidance to draft the article. PD and HM provided strategic oversight. Project administration: CG and SK led the administration aspects of this article, including discussions and development. Writing – original draft: led by CG and SK with strategic oversight by PD and HM. Various support provided by the remaining authors. Writing – reviewing and editing: led by CG, Ashleigh Wright, Jemma Rose Collova and Rama Agung-Igusti, with strategic advice, and review by PD and HM. Various support provided by the remaining authors.</p><p>Indigenous relationality is a shared principle that is practiced by Indigenous peoples across the world.<span><sup>1, 2</sup></span> It requires people to share cultural connections, along with intentions. In this article, we illustrate our positionality by using a similar approach to Bullen and colleagues.<span><sup>3</sup></span></p><p>Aboriginal and Torres Strait Islander peoples’ knowledges and practices are grounded in the principles of relationality, which are foundational for flourishing communities.<span><sup>3</sup></span> The historical and contemporary legacies of colonisation remain in everyday practices. These colonial legacies are a product of and result in racism, whereby there are deliberate attempts and/or everyday practices that destroy Indigenous Knowledges, such as languages, principles of relationality and cultural practices.<span><sup>12, 13</sup></span> Western research paradigms, which are grounded in colonial ideology, have played a significant role in that destruction. Western researchers, the academy and disciplines produced within the academy, are contexts that position non-Indigenous people, along with their processes and systems, as being the “knower” of Indigenous peoples, including Indigenous Knowledges. Within these same colonial research systems, Indi
{"title":"Decolonisation, Indigenous health research and Indigenous authorship: sharing our teams’ principles and practices","authors":"Pat Dudgeon (Bardi), Helen Milroy (Palyku), Belle Selkirk (Noongar), Ashleigh Wright (Nunga), Kahli Regan (Wongi and Noongar), Shraddha Kashyap, Rama Agung-Igusti, Joanna Alexi, Abigail Bray, Joan Chan, Ee Pin Chang, Sze Wing Georgiana Cheuk, Jemma Collova, Kate Derry, Chontel Gibson (Gamilaraay)","doi":"10.5694/mja2.52509","DOIUrl":"10.5694/mja2.52509","url":null,"abstract":"<p>The authorship order for this article was led by and decided by Pat Dudgeon and Helen Milroy, based on work conducted within and reported by the team. Before that decision, each team member was provided an opportunity to write a summary of their contributions to the article, as well as recognise other authors’ roles and responsibilities in the process. The authors’ contributions, as per the CRediT for this article are as follows, noting that only the relevant roles from CRediT are included: Conceptualisation: Pat Dudgeon (PD) and Helen Milroy (HM) provided leadership for the development and application of Indigenous authorship principles, including holding space for conversations and activities to support the learning within the team. The remaining authors learn, practice and support the application of Indigenous authorship principles. Chontel Gibson (CG) and Shraddha Kashyap (SK) led the conceptualisation of the article in consultation with the remaining authors. Methodology: CG led the methodological approach to design and write the article. HM and PD provided leadership and advice. Supervision: CG and SK provided everyday supervision and guidance to draft the article. PD and HM provided strategic oversight. Project administration: CG and SK led the administration aspects of this article, including discussions and development. Writing – original draft: led by CG and SK with strategic oversight by PD and HM. Various support provided by the remaining authors. Writing – reviewing and editing: led by CG, Ashleigh Wright, Jemma Rose Collova and Rama Agung-Igusti, with strategic advice, and review by PD and HM. Various support provided by the remaining authors.</p><p>Indigenous relationality is a shared principle that is practiced by Indigenous peoples across the world.<span><sup>1, 2</sup></span> It requires people to share cultural connections, along with intentions. In this article, we illustrate our positionality by using a similar approach to Bullen and colleagues.<span><sup>3</sup></span></p><p>Aboriginal and Torres Strait Islander peoples’ knowledges and practices are grounded in the principles of relationality, which are foundational for flourishing communities.<span><sup>3</sup></span> The historical and contemporary legacies of colonisation remain in everyday practices. These colonial legacies are a product of and result in racism, whereby there are deliberate attempts and/or everyday practices that destroy Indigenous Knowledges, such as languages, principles of relationality and cultural practices.<span><sup>12, 13</sup></span> Western research paradigms, which are grounded in colonial ideology, have played a significant role in that destruction. Western researchers, the academy and disciplines produced within the academy, are contexts that position non-Indigenous people, along with their processes and systems, as being the “knower” of Indigenous peoples, including Indigenous Knowledges. Within these same colonial research systems, Indi","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"578-586"},"PeriodicalIF":6.7,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11625532/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142623329","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}
Ciying Tan, Zoe Williams, Mohammad Ashraful Islam, Ray Kelly, Tuguy Esgin, Elif I Ekinci
<div> <section> <h3> Objectives</h3> <p>To review studies of interventions for reducing the impact of type 2 diabetes in Aboriginal and Torres Strait Islander people. The primary aim was to review and summarise the characteristics and findings of the interventions. The secondary aims were to assess their effects on diabetes and cardiometabolic risk factors, and the proportions of people with type 2 diabetes who achieved therapeutic targets with each intervention.</p> </section> <section> <h3> Study design</h3> <p>We searched eight electronic databases for publications of studies including Aboriginal or Torres Strait Islander people aged 15 years or older with diagnoses of type 2 diabetes, describing one or more diabetes interventions, and published in English during 1 January 2000 – 31 December 2020. Reference lists in the assessed articles were checked for further relevant publications.</p> </section> <section> <h3> Data sources</h3> <p>MEDLINE (Ovid), Web of Science (Clarivate), the Cochrane Library, Global Health (EBSCO), Indigenous Collection and Indigenous Australia (Informit), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and the World Health Organization International Clinical Trials Registry Platform (WHO-ICTRP).</p> </section> <section> <h3> Results</h3> <p>The database searches yielded 1424 unique records; after screening by title and abstract, the full text of 55 potentially relevant articles were screened, of which seventeen met our eligibility criteria: eleven cohort studies (seven retrospective audits and four prospective studies), three randomised controlled trials, and three observational, non-randomised follow-up studies. Twelve publications reported site-based (Aboriginal or Torres Strait Islander health service or diabetes clinic) rather than individual-based diabetes interventions. Interventions with statistically significant effects on mean glycated haemoglobin (HbA<sub>1c</sub>) levels were laparoscopic adjustable gastric banding, a 5-day diabetes self-management camp, treatment of <i>Strongyloides stercoralis</i> infections, community-based health worker-led management, point-of-care testing, and self-management approaches.</p> </section> <section> <h3> Conclusions</h3> <p>Few interventions for Aboriginal and Torres Strait Islander people with type 2 diabetes have been reported in peer-reviewed publications. Improving diabetes care services resulted in larger proportions of people achieving therapeutic Hb
目的回顾有关减少 2 型糖尿病对土著居民和托雷斯海峡岛民影响的干预措施的研究。主要目的是回顾和总结干预措施的特点和结果。次要目的是评估干预措施对糖尿病和心脏代谢风险因素的影响，以及通过每种干预措施达到治疗目标的 2 型糖尿病患者的比例：我们在八个电子数据库中检索了 2000 年 1 月 1 日至 2020 年 12 月 31 日期间用英语发表的研究论文，其中包括年龄在 15 岁或以上、确诊为 2 型糖尿病的原住民或托雷斯海峡岛民，并介绍了一种或多种糖尿病干预措施。数据来源：MEDLINE（Ovid）：数据来源：MEDLINE (Ovid)、Web of Science (Clarivate)、Cochrane Library、Global Health (EBSCO)、Indigenous Collection and Indigenous Australia (Informit)、Cumulative Index to Nursing and Allied Health Literature (CINAHL)、World Health Organization International Clinical Trials Registry Platform (WHO-ICTRP)：通过数据库检索获得了 1424 条唯一记录；经过标题和摘要筛选后，筛选出 55 篇潜在相关文章的全文，其中 17 篇符合我们的资格标准：11 篇队列研究（7 篇回顾性审计和 4 篇前瞻性研究）、3 篇随机对照试验和 3 篇观察性非随机随访研究。有 12 篇文献报道了基于地点（原住民或托雷斯海峡岛民医疗服务机构或糖尿病诊所）而非个人的糖尿病干预措施。对平均糖化血红蛋白（HbA1c）水平有显著统计学影响的干预措施包括腹腔镜可调节胃束带术、为期5天的糖尿病自我管理营、治疗盘尾丝虫病感染、社区卫生工作者主导的管理、护理点检测以及自我管理方法：在同行评审的出版物中，针对土著居民和托雷斯海峡岛民 2 型糖尿病患者的干预措施鲜有报道。改善糖尿病护理服务可使更多患者达到治疗性 HbA1c 目标。当土著居民和托雷斯海峡岛民社区参与到干预措施的各个层面时，效果会更好。对整体性、文化安全性和可及性干预措施的高质量研究应成为研究重点。
{"title":"Interventions for Aboriginal and Torres Strait Islander people with type 2 diabetes that modify its management and cardiometabolic risk factors: a systematic review","authors":"Ciying Tan, Zoe Williams, Mohammad Ashraful Islam, Ray Kelly, Tuguy Esgin, Elif I Ekinci","doi":"10.5694/mja2.52508","DOIUrl":"10.5694/mja2.52508","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To review studies of interventions for reducing the impact of type 2 diabetes in Aboriginal and Torres Strait Islander people. The primary aim was to review and summarise the characteristics and findings of the interventions. The secondary aims were to assess their effects on diabetes and cardiometabolic risk factors, and the proportions of people with type 2 diabetes who achieved therapeutic targets with each intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Study design</h3>\u0000 \u0000 <p>We searched eight electronic databases for publications of studies including Aboriginal or Torres Strait Islander people aged 15 years or older with diagnoses of type 2 diabetes, describing one or more diabetes interventions, and published in English during 1 January 2000 – 31 December 2020. Reference lists in the assessed articles were checked for further relevant publications.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Data sources</h3>\u0000 \u0000 <p>MEDLINE (Ovid), Web of Science (Clarivate), the Cochrane Library, Global Health (EBSCO), Indigenous Collection and Indigenous Australia (Informit), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and the World Health Organization International Clinical Trials Registry Platform (WHO-ICTRP).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The database searches yielded 1424 unique records; after screening by title and abstract, the full text of 55 potentially relevant articles were screened, of which seventeen met our eligibility criteria: eleven cohort studies (seven retrospective audits and four prospective studies), three randomised controlled trials, and three observational, non-randomised follow-up studies. Twelve publications reported site-based (Aboriginal or Torres Strait Islander health service or diabetes clinic) rather than individual-based diabetes interventions. Interventions with statistically significant effects on mean glycated haemoglobin (HbA<sub>1c</sub>) levels were laparoscopic adjustable gastric banding, a 5-day diabetes self-management camp, treatment of <i>Strongyloides stercoralis</i> infections, community-based health worker-led management, point-of-care testing, and self-management approaches.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Few interventions for Aboriginal and Torres Strait Islander people with type 2 diabetes have been reported in peer-reviewed publications. Improving diabetes care services resulted in larger proportions of people achieving therapeutic Hb","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"623-630"},"PeriodicalIF":6.7,"publicationDate":"2024-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11625535/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142623330","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}
Jordan Hansford, Santosh Valvi, Jasper de Boer, Geoff McCowage, Dinisha Govender, Maria Kirby, David Ziegler, Neevika Manoharan, Timothy Hassall, Brandon Wainwright, Frank Alvaro, Paul J Wood, David Eisenstat, Dong Anh Khuong Quang, Misty Jenkins, Matthew Dun, Stephen J Laughton, Raelene Endersby, Andrew Dodgshun, Nicholas Gottardo
<p>Each year, approximately 1000 children in Australia and New Zealand, aged 0–14 years, are diagnosed with cancer. Despite paediatric cancer accounting for less than 1% of all cancer cases, the impact on their families and communities is profound and disproportionate.<span><sup>1-3</sup></span> Paediatric brain cancers are the most significant cause of cancer-related deaths within this age group, responsible for 40% of fatalities despite representing only 14% of diagnoses.<span><sup>2</sup></span> Although significant advances in paediatric cancer treatments have pushed overall cure rates above 80%, the outlook for many brain tumour types remains bleak.<span><sup>4</sup></span> Moreover, survivors often face lifelong clinical sequelae that severely diminish their quality of life,<span><sup>5</sup></span> with 60% of survivors unable to reach independence in adulthood.<span><sup>6</sup></span> This stark reality underscores the need for the expansion of clinical trials and integrated preclinical research aimed at improving outcomes for these individuals.</p><p>Conducting clinical trials in paediatric oncology faces many challenges, notably in regions with small populations spread across large geographic areas. Additional challenges include the rarity of each diagnosis, requiring international collaboration for patient accrual within feasible timelines.<span><sup>7-9</sup></span> The limited duration and availability of grant funding complicates this, as the time for patient accrual and the generation of meaningful outcome data often surpasses funding periods. The specificity of diagnoses and the need for complex, multi-agent therapies reduce the appeal of these trials to pharmaceutical companies, which favour single-drug therapies. This necessitates consistent funding to maintain a skilled workforce in clinical trial conduct and monitoring. In this context, the Australian and New Zealand Children's Haematology/Oncology Group (ANZCHOG) and the Australian Brain Cancer Mission (ABCM)<span><sup>10</sup></span> have been addressing these challenges. By strategically deploying funds and fostering collaborations, ABCM and ANZCHOG have tackled the barriers that hinder clinical trial execution. ABCM provides the financial support needed for partnerships and trial capacity enhancement. ANZCHOG leads in navigating the challenges of paediatric oncology trials, building a network that overcomes logistical and financial constraints to facilitate progress and discovery.</p><p>Initiated in 2017 with the targeted mission of enhancing brain cancer outcomes, the ABCM strategically mobilises resources, collaborations and research with the goal to double brain cancer survival rates.<span><sup>10</sup></span> This mission is supported by a detailed strategic framework, blending substantial financial backing with extensive stakeholder engagement and a co-funded model that unites government, philanthropic and private sectors. This strategy not only amplifies research fu
{"title":"“If you build it, they will come”: the convergence of funding, research and collaboration in paediatric brain cancer clinical trials","authors":"Jordan Hansford, Santosh Valvi, Jasper de Boer, Geoff McCowage, Dinisha Govender, Maria Kirby, David Ziegler, Neevika Manoharan, Timothy Hassall, Brandon Wainwright, Frank Alvaro, Paul J Wood, David Eisenstat, Dong Anh Khuong Quang, Misty Jenkins, Matthew Dun, Stephen J Laughton, Raelene Endersby, Andrew Dodgshun, Nicholas Gottardo","doi":"10.5694/mja2.52506","DOIUrl":"10.5694/mja2.52506","url":null,"abstract":"<p>Each year, approximately 1000 children in Australia and New Zealand, aged 0–14 years, are diagnosed with cancer. Despite paediatric cancer accounting for less than 1% of all cancer cases, the impact on their families and communities is profound and disproportionate.<span><sup>1-3</sup></span> Paediatric brain cancers are the most significant cause of cancer-related deaths within this age group, responsible for 40% of fatalities despite representing only 14% of diagnoses.<span><sup>2</sup></span> Although significant advances in paediatric cancer treatments have pushed overall cure rates above 80%, the outlook for many brain tumour types remains bleak.<span><sup>4</sup></span> Moreover, survivors often face lifelong clinical sequelae that severely diminish their quality of life,<span><sup>5</sup></span> with 60% of survivors unable to reach independence in adulthood.<span><sup>6</sup></span> This stark reality underscores the need for the expansion of clinical trials and integrated preclinical research aimed at improving outcomes for these individuals.</p><p>Conducting clinical trials in paediatric oncology faces many challenges, notably in regions with small populations spread across large geographic areas. Additional challenges include the rarity of each diagnosis, requiring international collaboration for patient accrual within feasible timelines.<span><sup>7-9</sup></span> The limited duration and availability of grant funding complicates this, as the time for patient accrual and the generation of meaningful outcome data often surpasses funding periods. The specificity of diagnoses and the need for complex, multi-agent therapies reduce the appeal of these trials to pharmaceutical companies, which favour single-drug therapies. This necessitates consistent funding to maintain a skilled workforce in clinical trial conduct and monitoring. In this context, the Australian and New Zealand Children's Haematology/Oncology Group (ANZCHOG) and the Australian Brain Cancer Mission (ABCM)<span><sup>10</sup></span> have been addressing these challenges. By strategically deploying funds and fostering collaborations, ABCM and ANZCHOG have tackled the barriers that hinder clinical trial execution. ABCM provides the financial support needed for partnerships and trial capacity enhancement. ANZCHOG leads in navigating the challenges of paediatric oncology trials, building a network that overcomes logistical and financial constraints to facilitate progress and discovery.</p><p>Initiated in 2017 with the targeted mission of enhancing brain cancer outcomes, the ABCM strategically mobilises resources, collaborations and research with the goal to double brain cancer survival rates.<span><sup>10</sup></span> This mission is supported by a detailed strategic framework, blending substantial financial backing with extensive stakeholder engagement and a co-funded model that unites government, philanthropic and private sectors. This strategy not only amplifies research fu","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 10","pages":"520-523"},"PeriodicalIF":6.7,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52506","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142605004","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}
To the Editor: The Australian National Agreement on Closing the Gap is an undeniably important piece of political infrastructure.1 The new approach, outlined in the 2020 National Agreement, vows to achieve First Nations equity by recognising the strength of, and empowering, First Nations people, communities and organisations.
By its nature, “closing the gap” inadvertently places non-Indigenous Australians above First Nations people and sets outcomes of non-Indigenous Australians as the gold standard. Although it is important to understand the relative and disproportionate disadvantage that First Nations people experience in Australia, the closing the gap narrative continues to perpetuate deficit discourse and encourages the benchmarking of First Nations outcomes against non-Indigenous Australians.
This deficit-driven process of benchmarking has become increasingly prevalent in First Nations-focused research, where the research problem is often described by the relative gap between First Nations people and non-Indigenous Australians. In many cases, highlighting the gap provides little value to the research, and only persists to promote deficit discourse — by continually defining the gap, we continually emphasise the deficit.
Progress towards equity for First Nations people has been slow, stunted and non-existent in many of the Closing the Gap target and priority reform areas.2 In light of this, the importance of moving away from the deficit narrative surrounding First Nations outcomes is being increasingly recognised.3 Driving high quality research in genuine partnership with First Nations people is key to driving real change. As such, it is critical that researchers, reviewers and journals play their part in shifting the deficit narrative.
Defining the research problem is integral to effective dissemination of research findings and attraction of funding. For health research, this often means defining rates of disease morbidity and mortality. These statistics are seldom positive but provide important context to research studies. Shifting the deficit narrative in First Nations health research should not mean that important, but negative, statistics are omitted from the story; rather, researchers should remain cognisant of the deficit narrative that comparison of First Nations outcomes to non-Indigenous Australians perpetuates, and should seek to only compare outcomes where it is absolutely pertinent to the context of the study.
{"title":"Defining the gap, emphasising the deficit","authors":"Bridie Mulholland","doi":"10.5694/mja2.52518","DOIUrl":"10.5694/mja2.52518","url":null,"abstract":"<p><span>To the Editor:</span> The Australian National Agreement on Closing the Gap is an undeniably important piece of political infrastructure.<span><sup>1</sup></span> The new approach, outlined in the 2020 National Agreement, vows to achieve First Nations equity by recognising the strength of, and empowering, First Nations people, communities and organisations.</p><p>By its nature, “closing the gap” inadvertently places non-Indigenous Australians above First Nations people and sets outcomes of non-Indigenous Australians as the gold standard. Although it is important to understand the relative and disproportionate disadvantage that First Nations people experience in Australia, the closing the gap narrative continues to perpetuate deficit discourse and encourages the benchmarking of First Nations outcomes against non-Indigenous Australians.</p><p>This deficit-driven process of benchmarking has become increasingly prevalent in First Nations-focused research, where the research problem is often described by the relative gap between First Nations people and non-Indigenous Australians. In many cases, highlighting the gap provides little value to the research, and only persists to promote deficit discourse — by continually defining the gap, we continually emphasise the deficit.</p><p>Progress towards equity for First Nations people has been slow, stunted and non-existent in many of the Closing the Gap target and priority reform areas.<span><sup>2</sup></span> In light of this, the importance of moving away from the deficit narrative surrounding First Nations outcomes is being increasingly recognised.<span><sup>3</sup></span> Driving high quality research in genuine partnership with First Nations people is key to driving real change. As such, it is critical that researchers, reviewers and journals play their part in shifting the deficit narrative.</p><p>Defining the research problem is integral to effective dissemination of research findings and attraction of funding. For health research, this often means defining rates of disease morbidity and mortality. These statistics are seldom positive but provide important context to research studies. Shifting the deficit narrative in First Nations health research should not mean that important, but negative, statistics are omitted from the story; rather, researchers should remain cognisant of the deficit narrative that comparison of First Nations outcomes to non-Indigenous Australians perpetuates, and should seek to only compare outcomes where it is absolutely pertinent to the context of the study.</p><p>No relevant disclosures.</p>","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"631-632"},"PeriodicalIF":6.7,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52518","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142605061","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}
To the Editor: Recently, I had the privilege of providing end-of-life care for a remarkable man who had contributed a great richness to the cultural life of Australia. A New Zealander by birth, he came to Australia as a young man and over the subsequent four decades, built a life in Victoria. He had witnessed both good and bad deaths; a brother had died uncomfortably following an aspiration, whereas his mother had “a beautiful dying”, her suffering eased with a morphine infusion. We shared a wonderful conversation as this articulate and thoughtful man reflected on these deaths and how they guided his thoughts as he considered his own. He valued both his dignity and the impact that the manner of his death would have on those he would leave behind, and had sought out assisted dying so that he could die on his own terms.
Voluntary assisted dying (VAD) involves medical assistance to end life when the suffering from a terminal disease becomes intolerable. In Victoria,1 South Australia2 and Western Australia,3 eligibility for VAD is restricted to Australian citizens and permanent residents.4 The intended purpose of this restriction is to prevent patients travelling to access VAD.5 However, the consequence of this legislative language is to deny access to New Zealanders who have substantive connection to Australia, and who otherwise enjoy many of the rights and obligations of Australian citizens. New Zealand citizens are entitled to live, work and freely access most government benefits (including Medicare) in Australia, and so may choose to not apply for citizenship. As of 2023, there were 598 000 New Zealanders residing in Australia,6 many of whom are not eligible for VAD by circumstances of their Australian residency alone. If they remained in New Zealand, they would be entitled to access VAD there.7
This was the case for my patient, who discovered his ineligibility too late in his disease process. Although palliative care gave him a relatively quick and comfortable death, it did not give him a death on his own terms. Although I recognise the value of preventing medical tourism for the purpose of VAD, the current requirement is unnecessarily restrictive and the law, as it stands in Victoria, is unjust. The more nuanced approach taken in other states, which requires three years of residency, would remedy this inequity.
The family of the patient reviewed this letter and provided written consent for publication.
{"title":"Inequity of access to voluntary assisted dying for New Zealand citizens residing permanently in Australia","authors":"Christopher J Barlow","doi":"10.5694/mja2.52519","DOIUrl":"10.5694/mja2.52519","url":null,"abstract":"<p><span>To the Editor:</span> Recently, I had the privilege of providing end-of-life care for a remarkable man who had contributed a great richness to the cultural life of Australia. A New Zealander by birth, he came to Australia as a young man and over the subsequent four decades, built a life in Victoria. He had witnessed both good and bad deaths; a brother had died uncomfortably following an aspiration, whereas his mother had “a beautiful dying”, her suffering eased with a morphine infusion. We shared a wonderful conversation as this articulate and thoughtful man reflected on these deaths and how they guided his thoughts as he considered his own. He valued both his dignity and the impact that the manner of his death would have on those he would leave behind, and had sought out assisted dying so that he could die on his own terms.</p><p>Voluntary assisted dying (VAD) involves medical assistance to end life when the suffering from a terminal disease becomes intolerable. In Victoria,<span><sup>1</sup></span> South Australia<span><sup>2</sup></span> and Western Australia,<span><sup>3</sup></span> eligibility for VAD is restricted to Australian citizens and permanent residents.<span><sup>4</sup></span> The intended purpose of this restriction is to prevent patients travelling to access VAD.<span><sup>5</sup></span> However, the consequence of this legislative language is to deny access to New Zealanders who have substantive connection to Australia, and who otherwise enjoy many of the rights and obligations of Australian citizens. New Zealand citizens are entitled to live, work and freely access most government benefits (including Medicare) in Australia, and so may choose to not apply for citizenship. As of 2023, there were 598 000 New Zealanders residing in Australia,<span><sup>6</sup></span> many of whom are not eligible for VAD by circumstances of their Australian residency alone. If they remained in New Zealand, they would be entitled to access VAD there.<span><sup>7</sup></span></p><p>This was the case for my patient, who discovered his ineligibility too late in his disease process. Although palliative care gave him a relatively quick and comfortable death, it did not give him a death on his own terms. Although I recognise the value of preventing medical tourism for the purpose of VAD, the current requirement is unnecessarily restrictive and the law, as it stands in Victoria, is unjust. The more nuanced approach taken in other states, which requires three years of residency, would remedy this inequity.</p><p>The family of the patient reviewed this letter and provided written consent for publication.</p><p>No relevant disclosures.</p>","PeriodicalId":18214,"journal":{"name":"Medical Journal of Australia","volume":"221 11","pages":"631"},"PeriodicalIF":6.7,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.5694/mja2.52519","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583185","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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