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Abstract

Introduction: Monogenic diabetes accounts for 2–5% of diabetes. Although its identification has substantial therapeutic implications, more than 80% of affected individuals are undiagnosed or misdiagnosed as having type 1 or 2 diabetes. This consensus statement reviews genetic testing for monogenic diabetes in adults and provides evidence‐based recommendations. With representation from the Australian Diabetes Society (ADS), Endocrine Society of Australia (ESA), Human Genetics Society of Australasia (HGSA), New Zealand Society for the Study of Diabetes (NZSSD) and Royal College of Pathologists of Australasia (RCPA), the writing group: (i) defined questions to be addressed, (ii) conducted critical literature reviews, (iii) graded the evidence, and (iv) generated recommendations that were refined until consensus was achieved. All contemporary literature was considered, with a focus on Australian and New Zealand data, where available.

Main recommendations: Indications for genetic testing for monogenic diabetes in adults include: (i) diabetes onset before 12 months of age, (ii) glucokinase (GCK)‐hyperglycaemia phenotype, (iii) diabetes onset before 30 years of age without markers of type 1 or 2 diabetes, (iv) syndromic monogenic diabetes phenotype, or (v) high probability of monogenic diabetes using validated screening tools. Individuals undergoing genetic testing should be provided with comprehensive pre‐ and post‐test counselling. Genetic testing typically involves next‐generation sequencing, and should include classically syndromic genetic variants (eg, m.3243A>G, HNF1B variants) even in individuals with isolated diabetes. A molecular diagnosis facilitates gene‐specific treatment, surveillance, reproductive planning and cascade testing of relatives. In pregnancies of individuals with GCK‐hyperglycaemia, maternal treatment can be individualised to known or assumed fetal genotype. Individuals with monogenic diabetes variants of uncertain significance or negative results may be considered for further phenotype or genotype assessment and recruitment into research studies.

Changes in management: This consensus statement aims to raise awareness of monogenic diabetes among clinicians involved in the care of patients with diabetes, and to improve genetic testing rates across Australia and New Zealand.

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1 University of Adelaide, Adelaide, SA
2 Royal Adelaide Hospital, Adelaide, SA
3 University of Western Australia, Perth, WA
4 Fiona Stanley and Fremantle Hospitals, Perth, WA
5 Mater Pathology, Brisbane, QLD
6 Auckland City Hospital, Auckland, New Zealand
7 Clinical Genomics, St Vincent’s Health Australia Ltd, Sydney, NSW
8 University of New South Wales, Sydney, NSW
9 University of Notre Dame, Sydney, NSW
10 University of Sydney, Sydney, NSW
11 Waikato Regional Diabetes Service, Te Whatu Ora Health New Zealand Waikato, Hamilton, New Zealand
12 University of Waikato, Hamilton, New Zealand
13 Genetic Health Service New Zealand, Auckland City Hospital, Auckland, New Zealand
14 Austin Health, Melbourne, VIC
15 University of Melbourne, Melbourne, VIC
16 Australian Centre for Accelerating Diabetes Innovations, Melbourne, VIC
17 Barts Health NHS Foundation Trust, London, United Kingdom
18 University of Auckland, Auckland, New Zealand
19 Auckland Diabetes Centre, Health New Zealand Te Whatu Ora, Auckland, New Zealand
20 Specialist Weight Management Service, Health New Zealand Te Whatu Ora, Auckland, New Zealand
21 St Vincent’s Hospital, Sydney, NSW
22 Garvan Institute of Medical Research, Sydney, NSW

Correspondence: sunita.desousa@sa.gov.au

Open access:

Open access publishing facilitated by The University of Adelaide, as part of the Wiley – The University of Adelaide agreement via the Council of Australian University Librarians.

Acknowledgements:

Sunita De Sousa is supported by the Royal Adelaide Hospital Mary Overton Early Career Research Fellowship.

Competing interests:

The authors of this article are members of the societies that have produced this joint society consensus statement: Australian Diabetes Society (ADS; Aleena Ali, Timothy Davis, Sunita De Sousa, Elif Ekinci, Jerry Greenfield), Endocrine Society of Australia (ESA; Sunita De Sousa, Elif Ekinci, Jerry Greenfield, Ryan Paul), Human Genetics Society of Australasia (HGSA; Sunita De Sousa, Mark Greenslade, James Harraway, Juliet Taylor, Kathy Wu), New Zealand Society for the Study of Diabetes (NZSSD; Rinki Murphy, Ryan Paul), Royal College of Pathologists of Australasia (RCPA; James Harraway) and Royal College of Pathologists, UK (RCPath UK; Mark Greenslade). The following authors received honoraria/conference support: Timothy Davis (Novo Nordisk, BI, Merck, Mylan, sanofi‐aventis, Eli Lilly), Sunita De Sousa (Pfizer), Elif Ekinci (Boehringer, Novo Nordisk), Jerry Greenfield (Lilly, Novartis), Rinki Murphy (Eli Lilly, Boehringer Ingelheim, Novo Nordisk), Ryan Paul (Dexcom, Novo Nordisk, Eli Lilly, Boehringer Ingelheim, Radiant Health). The following authors have advisory board memberships: Timothy Davis (Novo Nordisk, Merck), Sunita De Sousa (Novo Nordisk), Elif Ekinci (Eli Lilly, Sanofi), Ryan Paul (Dexcom, Abbot, Novo Nordisk), Kathy Wu (23 Strands). The following authors have received research support: Elif Ekinci (Medtronic, Novo Nordisk, Eli Lilly, Boehringer, Versanis, Endogenex), Ryan Paul (Dexcom).

Author contribution statement:

All authors contributed to the conceptualization, methodology, analysis and writing (original draft, review and editing) of the manuscript.

1. Murphy R, Colclough K, Pollin TI, et al. The use of precision diagnostics for monogenic diabetes: a systematic review and expert opinion. Commun Med (Lond) 2023; 3: 136.
2. Shields BM, McDonald TJ, Ellard S, et al. The development and validation of a clinical prediction model to determine the probability of MODY in patients with young‐onset diabetes. Diabetologia 2012; 55: 1265‐1272.
3. Guyatt GH, Oxman AD, Vist GE, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ 2008; 336: 924‐926.
4. Swiglo BA, Murad MH, Schünemann HJ, et al. A case for clarity, consistency, and helpfulness: state‐of‐the‐art clinical practice guidelines in endocrinology using the grading of recommendations, assessment, development, and evaluation system. J Clin Endocrinol Metab 2008; 93: 666‐673.
5. Petersenn S, Fleseriu M, Casanueva FF, et al. Diagnosis and management of prolactin‐secreting pituitary adenomas: a Pituitary Society International Consensus Statement. Nat Rev Endocrinol 2023; 19: 722‐740.
6. Bishay RH, Greenfield JR. A review of maturity onset diabetes of the young (MODY) and challenges in the management of glucokinase‐MODY. Med J Aust 2016; 205: 480‐485. https://www.mja.com.au/journal/2016/205/10/review‐maturity‐onset‐diabetes‐young‐mody‐and‐challenges‐management‐glucokinase
7. Colclough K, Ellard S, Hattersley A, Patel K. Syndromic monogenic diabetes genes should be tested in patients with a clinical suspicion of maturity‐onset diabetes of the young. Diabetes 2022; 71: 530‐537.
8. Ali AS, Wong JC, Campbell A, Ekinci EI. Testing for monogenic diabetes is lower than required to reveal its true prevalence in an Australian population. Diabet Epidemiol Manag 2022; 6: 100069.
9. Harrington F, Greenslade M, Colclough K, et al. Monogenic diabetes in New Zealand ‐ An audit based revision of the monogenic diabetes genetic testing pathway in New Zealand. Front Endocrinol (Lausanne) 2023; 14: 1116880.
10. Stark Z, Dolman L, Manolio TA, et al. Integrating genomics into healthcare: a global responsibility. Am J Hum Genet 2019; 104: 13‐20.
11. Greeley SAW, Polak M, Njølstad PR, et al. ISPAD Clinical Practice Consensus Guidelines 2022: The diagnosis and management of monogenic diabetes in children and adolescents. Pediatr Diabetes 2022; 23: 1188‐1211.
12. Gjesing AP, Rui G, Lauenborg J, et al. High prevalence of diabetes‐predisposing variants in MODY genes among Danish women with gestational diabetes mellitus. J Endocr Soc 2017; 1: 681‐690.
13. Faguer S, Chassaing N, Bandin F, et al. The HNF1B score is a simple tool to select patients for HNF1B gene analysis. Kidney Int 2014; 86: 1007‐1015.
14. Holmes‐Walker DJ, Boyages SC. Prevalence of maternally inherited diabetes and deafness in Australian diabetic subjects. Diabetologia 1999; 42: 1028‐1029.
15. Ali AS, Ekinci EI, Pyrlis F. Maternally inherited diabetes and deafness (MIDD): an uncommon but important cause of diabetes. Endocr Metab Sci 2021; 2: 100074.
16. Carroll RW, Murphy R. Monogenic diabetes: a diagnostic algorithm for clinicians. Genes (Basel) 2013; 4: 522‐535.
17. De Sousa SMC, Wu KHC, Colclough K, et al. Identification of monogenic diabetes in an Australian cohort using the Exeter maturity‐onset diabetes of the young (MODY) probability calculator and next‐generation sequencing gene panel testing. Acta Diabetol 2024; 61: 181‐188.
18. Toomata Z, Leask M, Krishnan M, et al. Genetic testing for misclassified monogenic diabetes in Māori and Pacific peoples in Aōtearoa New Zealand with early‐onset type 2 diabetes. Front Endocrinol (Lausanne) 2023; 14: 1174699.
19. McEwen A, Jacobs C. Who we are, what we do, and how we add value: The role of the genetic counseling ‘philosophy of practice’ statement in a changing time. J Genet Couns 2021; 30: 114‐120.
20. MinterEllison. Government bans use of genetic test results in life insurance. Sept 2024. https://www.minterellison.com/articles/government‐bans‐use‐of‐genetic‐test‐results‐in‐life‐insurance#:~:text=On%2011%20September%202024%2C%20the,results%20in%20life%20insurance%20underwriting (viewed Feb 2025).
21. Otlowski MF, Williamson R. Ethical and legal issues and the “new genetics”. Med J Aust 2003; 178: 582‐585. https://www.mja.com.au/journal/2003/178/11/ethical‐and‐legal‐issues‐and‐new‐genetics
22. Cormack M, Irving KB, Cunningham F, Fennell AP. Mainstreaming genomic testing: pre‐test counselling and informed consent. Med J Aust 2024; 220: 403‐406. https://www.mja.com.au/journal/2024/220/8/mainstreaming‐genomic‐testing‐pre‐test‐counselling‐and‐informed‐consent
23. Pitini E, Baccolini V, Migliara G, et al. Time to align: a call for consensus on the assessment of genetic testing. Front Public Health 2021; 9: 807695.
24. Bean LJH, Funke B, Carlston CM, et al. Diagnostic gene sequencing panels: from design to report‐a technical standard of the American College of Medical Genetics and Genomics (ACMG). Genet Med 2020; 22: 453‐461.
25. SoRelle JA, Funke BH, Eno CC, et al. Slice testing‐considerations from ordering to reporting: a joint report of the Association for Molecular Pathology, College of American Pathologists, and National Society of Genetic Counselors. J Mol Diagn 2024; 26: 159‐167.
26. Berberich AJ, Wang J, Cao H, et al. Simplifying detection of copy‐number variations in maturity‐onset diabetes of the young. Can J Diabetes 2021; 45: 71‐77.
27. McGlaughon JL, Goldstein JL, Thaxton C, et al. The progression of the ClinGen gene clinical validity classification over time. Hum Mutat 2018; 39: 1494‐1504.
28. Thaxton C, Good ME, DiStefano MT, et al. Utilizing ClinGen gene‐disease validity and dosage sensitivity curations to inform variant classification. Hum Mutat 2022; 43: 1031‐1040.
29. Martin AR, Williams E, Foulger RE, et al. PanelApp crowdsources expert knowledge to establish consensus diagnostic gene panels. Nat Genet 2019; 51: 1560‐1565.
30. Saint‐Martin C, Bouvet D, Bastide M, Bellanné‐Chantelot C. Gene panel sequencing of patients with monogenic diabetes brings to light genes typically associated with syndromic presentations. Diabetes 2022; 71: 578‐584.
31. Naylor RN, Patel KA, Kettunen JLT, et al. Systematic review of treatment of beta‐cell monogenic diabetes [preprint]. medRxiv 2023 Sep 22:2023.05.12.23289807; 2023. (viewed Feb 2025).
32. Delvecchio M, Pastore C, Giordano P. Treatment options for MODY patients: a systematic review of literature. Diabetes Ther 2020; 11: 1667‐1685.
33. Steele AM, Shields BM, Wensley KJ, et al. Prevalence of vascular complications among patients with glucokinase mutations and prolonged, mild hyperglycemia. JAMA 2014; 311: 279‐286.
34. Steele AM, Shields BM, Shepherd M, et al. Increased all‐cause and cardiovascular mortality in monogenic diabetes as a result of mutations in the HNF1A gene. Diabet Med 2010; 27: 157‐161.
35. Mateus JC, Rivera C, O’Meara M, et al. Maturity‐onset diabetes of the young type 5 a MULTISYSTEMIC disease: a CASE report of a novel mutation in the HNF1B gene and literature review. Clin Diabetes Endocrinol 2020; 6: 16.
36. Guillausseau PJ, Dubois‐Laforgue D, Massin P, et al. Heterogeneity of diabetes phenotype in patients with 3243 bp mutation of mitochondrial DNA (Maternally Inherited Diabetes and Deafness or MIDD). Diabetes Metab 2004; 30: 181‐186.
37. Human Genetics Society of Australia. HGSA Position Statement: Predictive and Pre‐symptomatic Genetic Testing in Adults and Children. HGSA, Dec 2023. https://hgsa.org.au/common/Uploaded%20files/pdfs/policies,%20position%20statements%20and%20guidelines/eesic/Predictive%20testing%20in%20Audlts%20and%20Children.pdf (viewed June 2025).
38. Liljeström B, Aktan‐Collan K, Isomaa B, et al. Genetic testing for maturity onset diabetes of the young: uptake, attitudes and comparison with hereditary non‐polyposis colorectal cancer. Diabetologia 2005; 48: 242‐250.
39. Richards S, Aziz N, Bale S, et al. Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology. Genet Med 2015; 17: 405‐423.
40. De Sousa SMC, Phan JMN, Wells A, et al. Improving detection of monogenic diabetes through reanalysis of GCK variants of uncertain significance. Acta Diabetol 2025.
41. Rudland VL. Diagnosis and management of glucokinase monogenic diabetes in pregnancy: current perspectives. Diabetes Metab Syndr Obes 2019; 12: 1081‐1089.
42. Murphy R, Turnbull DM, Walker M, Hattersley AT. Clinical features, diagnosis and management of maternally inherited diabetes and deafness (MIDD) associated with the 3243A>G mitochondrial point mutation. Diabet Med 2008; 25: 383‐399.
43. Timsit J, Ciangura C, Dubois‐Laforgue D, et al. Pregnancy in women with monogenic diabetes due to pathogenic variants of the glucokinase gene: lessons and challenges. Front Endocrinol (Lausanne) 2022; 12: 802423.
44. Chakera AJ, Hurst PS, Spyer G, et al. Molecular reductions in glucokinase activity increase counter‐regulatory responses to hypoglycemia in mice and humans with diabetes. Mol Metab 2018; 17: 17‐27.
45. Kirzhner A, Barak O, Vaisbuch E, et al. The challenges of treating glucokinase MODY during pregnancy: a review of maternal and fetal outcomes. Int J Environ Res Public Health 2022; 19: 5980.
46. Hughes AE, Houghton JAL, Bunce B, et al. Bringing precision medicine to the management of pregnancy in women with glucokinase‐MODY: a study of diagnostic accuracy and feasibility of non‐invasive prenatal testing. Diabetologia 2023; 66: 1997‐2006.
47. Hardy T. The role of prenatal diagnosis following preimplantation genetic testing for single‐gene conditions: a historical overview of evolving technologies and clinical practice. Prenat Diagn 2020; 40: 647‐651.
48. Smeets HJM, Sallevelt S, Herbert M. Reproductive options in mitochondrial disease. Handb Clin Neurol 2023; 194: 207‐228.

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The prevalence of and variation in indicators of the quality and safety of long term aged care in Australia, 2019: a cross‐sectional population‐based study

Tesfahun C Eshetie, Gillian E Caughey, Catherine Lang, Olivia Ryan, Renuka Visvanathan, Craig Whitehead, Keith Evans, Janet K Sluggett, Jyoti Khadka, Carolyn Dawkins, Helena Williams, Miranda Starke, Sara Blunt, Anne Liddell, Megan Corlis, Anna Sheppeard, Penelope Lello, Marilyn Thien, Steven L Wesselingh and Maria C Inacio

Med J Aust || doi: 10.5694/mja2.52709
Published online: 4 August 2025

ARTICLE
AUTHORS
REFERENCES

Topics

Health services administration

Gerontology

Nervous system diseases

Social determinants of health

Statistics, epidemiology and research design

Abstract

Objectives: To examine the prevalence of and variation in indicators of the quality and safety of care provided to older Australians who received subsidised long term care during 2019, by type of care (residential aged care or home care packages).

Study design: Cross‐sectional population‐based study; analysis of linked data from the Registry of Senior Australians (ROSA) National Historical Cohort (National Aged Care Data Clearinghouse, National Death Index, Medicare Benefits Schedule, Pharmaceutical Benefits Scheme databases; South Australian, New South Wales, Victorian, and Queensland hospital admissions and emergency department [ED] presentations databases).

Setting, participants: All people in the ROSA National Historical Cohort who received residential or home‐based aged care during the 2019 calendar year.

Main outcome measures: Risk‐adjusted prevalence estimates (with 95% confidence intervals, CIs) for quality and safety indicators of care (twelve for residential care, fifteen for home care packages); proportions by indicator of outlier residential facilities and home care services (outside 95% CI for mean value) as a measure of variation in quality of care.

Results: In 2019, 244 754 people received residential aged care in 2746 facilities; 149 104 people received home care packages through 2407 home care services. For residential aged care, indicator prevalence and variation were highest for antibiotic use (prevalence: 64.5% [95% CI, 64.3–64.7%]; 13.9% of facilities beyond upper 95% CI bound), high sedative load (prevalence: 45.2%, [95% CI, 45.0–45.4%]; 12.4% beyond upper 95% CI bound), and ED presentations (prevalence: 37.8% [95% CI, 37.6–38.0%]; 19.3% beyond upper 95% CI bound). For home care services, indicator prevalence and variation were highest for waiting time longer than six months (prevalence: 81.8% [95% CI, 81.4–82.1%]; 17.5% of services beyond upper 95% CI bound), ED presentations (prevalence: 43.2% [95% CI, 43.0–43.5%]; 14.7% beyond upper 95% CI bound), chronic disease management plans (prevalence: 43.2% [95% CI, 42.9–43.5%]; 12.9% below lower 95% CI bound), and home medicines reviews (prevalence: 3.2% [95% CI, 3.1–3.3%]; 28.9% below lower 95% CI bound). The proportions of home care recipients were larger than for facility residents for hospitalisations with delirium/dementia (home care, 10.5% [95% CI, 10.1–10.9%]; residents, 4.3% [95% CI, 4.2–4.4%]), weight loss/malnutrition (home care, 5.5% [95% CI, 5.3–5.6%]; residents, 2.5% [95% CI, 2.4–2.6%]), or medication‐related events (home care, 4.6% [95% CI, 4.5–4.7%]; residents, 2.4% [95% CI, 2.3–2.5%]).

Conclusions: The marked national variations by residential or home aged care provider in antibiotic use, ED presentations, high sedative load, longer waiting times for home care services, home medicines reviews, and chronic disease management plans suggest these areas could benefit from targeted quality improvement strategies.

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1 Registry of Senior Australians (ROSA), South Australian Health and Medical Research Institute, Adelaide, SA
2 Caring Futures Institute, Flinders University, Adelaide, SA
3 University of South Australia, Adelaide, SA
4 Adelaide Geriatrics Training and Research with Aged Care Centre, University of Adelaide, Adelaide, SA
5 Central Adelaide Local Health Network, SA Health, Adelaide, SA
6 Southern Adelaide Local Health Network, SA Health, Adelaide, SA
7 Flinders University, Adelaide, SA
8 ECH Inc, Adelaide, SA
9 SilverChain Group Limited, Adelaide, SA
10 Council on the Ageing South Australia, Adelaide, SA
11 James Brown Memorial Trust, Adelaide, SA
12 Ageing Australia, Adelaide, SA
13 Australian Nursing and Midwifery Federation (SA Branch), Adelaide, SA
14 South Australian Health and Medical Research Institute, Adelaide, SA

Correspondence: tesfahun.eshetie@sahmri.com

Open access:

Open access publishing facilitated by Flinders University, as part of the Wiley – Flinders University agreement via the Council of Australian University Librarians.

Data Sharing:

The data for this study were made available to the researchers under ethics, governance, and confidentiality agreements that do not allow public sharing.

Acknowledgements:

We acknowledge the Registry of Senior Australians’ (ROSA) Steering Committee, the Consumer and Community Advisory Committee, the Aboriginal and Torres Strait Islander Advisory Committee, the ROSA Research Centre team based at the South Australian Health and Medical Research Institute (SAHMRI), and the Caring Futures Institute, College of Nursing and Health Sciences at Flinders University for ensuring the success of the ROSA and supporting this study. We also acknowledge the South Australian Department for Innovation and Skills (2017–2021), which provided support for establishing ROSA; the Australian Medical Research Future Fund (2021–2024: PHRDI000009; 2024–2029: NCRI000109), and ROSA collaborating partners (SAHMRI, ECH Inc, Silver Chain, Bolton Clarke) for ongoing support; the Australian Institute of Health and Welfare for the linkage and construction of input data; SA Health, the New South Wales Ministry of Health, the Victorian Department of Health, and Queensland Health for providing the state‐based hospital admissions and emergency department data used in the ROSA, with linkage by the AIHW, the Centre for Health Record Linkage (CHeReL), the Centre for Victorian Data Linkage (Victorian Department of Health), SA‐NT DataLink, and the Queensland Health Statistical Services Branch. We acknowledge Marjorie Schulze, the ROSA consumer representative and Tesfahun C Eshetie's consumer mentor for comments on the study findings. The funders played no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests:

Janet K Sluggett is a non‐executive director of Southern Cross Care SA, NT, VIC, and is a pharmacist accredited to perform comprehensive medication reviews.

1. Australian Department of Health and Aged Care. 2022–23 report on the operation of the Aged Care Act 1997. https://www.gen‐agedcaredata.gov.au/getmedia/360dc871‐b22d‐4c10‐b66b‐e9d914afe70c/Health‐and‐Aged‐Care‐ROACA‐2022‐23_Web.pdf (viewed Jan 2024).
2. Royal Commission into Aged Care Quality and Safety. Final report. Volume 2: the current system. 1 Mar 2021. https://www.royalcommission.gov.au/system/files/2021‐03/final‐report‐volume‐2.pdf (viewed Mar 2025).
3. Royal Commission into Aged Care Quality and Safety. A history of aged care reviews [briefing paper]. 28 Oct 2019. https://apo.org.au/sites/default/files/resource‐files/2019‐10/apo‐nid265806.pdf (viewed Mar 2025).
4. Royal Commission into Aged care Quality and Safety. Final report. Volume 1: Summary and recommendations. 1 Mar 2021. https://www.royalcommission.gov.au/aged‐care/final‐report (viewed Jan 2025).
5. Australian Consortium for Aged Care. ACAC Quality Indicator Repository overview: first release (version 1.0.0). Mar 2025. https://agedcareconsortium.com.au/resources/common/ACAC‐Quality‐Indicator‐Repository‐Overview‐FINAL‐WEBSITE_V1.0.0_March25.pdf (viewed June 2025).
6. Australian Department of Health and Aged Care. National aged care mandatory quality indicator program manual 3.0 and 4.0: part A. 8 Nov 2023. https://www.health.gov.au/resources/publications/national‐aged‐care‐mandatory‐quality‐indicator‐program‐manual‐30‐part‐a?language=en (viewed Jan 2025).
7. Australian Department of Health and Aged Care. Star Ratings provider manual 2.3. Updated 6 Mar 2025. https://www.health.gov.au/sites/default/files/2025‐03/star‐ratings‐provider‐manual.pdf (viewed Mar 2024).
8. Inacio MC, Eshetie TC, Caughey GE, et al. Quality and safety in residential aged care: an evaluation of a national quality indicator programme. Intern Med J 2023; 53: 2073‐2078.
9. Agency for Healthcare Research and Quality. Major hospital quality measurement sets. Updated Feb 2023. https://www.ahrq.gov/talkingquality/measures/setting/hospitals/measurement‐sets.html (viewed Jan 2024).
10. Inacio MC, Caughey GE, Wesselingh S; ROSA Research Team and Steering Committee Members. Registry of Senior Australians (ROSA): integrating cross‐sectoral information to evaluate quality and safety of care provided to older people. BMJ Open 2022; 12: e066390.
11. Caughey GE, Lang CE, Bray SCE, et al. Quality and safety indicators for home care recipients in Australia: development and cross‐sectional analyses. BMJ Open 2022; 12: e063152.
12. Inacio MC, Lang C, Caughey GE, et al. The Registry of Senior Australians outcome monitoring system: quality and safety indicators for residential aged care. Int J Qual Health Care 2020; 32: 502‐510.
13. Caughey G, Lang C, Bray S, et al. International and national quality and safety indicators for aged care. Report prepared for the Royal Commission into Aged Care Quality and Safety [research paper 8]. Aug 2020. Archived: https://nla.gov.au/nla.obj‐2924408596/view (viewed Mar 2024).
14. Royal Commission into Aged Care Quality and Safety. The cost of residential aged care [research paper 9]. Aug 2020. Archived: https://nla.gov.au/nla.obj‐2924408652/view (viewed Mar 2024).
15. Royal Commission into Aged Care Quality and Safety. Residential care quality indicator profile [research paper 15]. Nov 2020. Archived: https://trove.nla.gov.au/work/246455657 (viewed Mar 2024).
16. Royal Commission into Aged Care Quality and Safety. Hospitalisations in Australian aged care: 2014/15 to 2018/19 [research paper 21]. Feb 2021. Archived: https://nla.gov.au/nla.obj‐2924408762/view (viewed Mar 2024).
17. Royal Commission into Aged Care Quality and Safety. Does the quality of residential aged care vary with residents’ financial means? [research paper 19]. Feb 2021. Archived: https://nla.gov.au/nla.obj‐2924408770/view (viewed Mar 2024).
18. Ma N, Sutton N, Yang JS, et al. The quality effects of agency staffing in residential aged care. Australas J Ageing 2023; 42: 195‐203.
19. Yong J, Yang O, Zhang Y, Scott A. Ownership, quality and prices of nursing homes in Australia: why greater private sector participation did not improve performance. Health Policy 2021; 125: 1475‐1481.
20. Australian Department of Health and Aged Care. Residential aged care program. Updated 2 Apr 2025. https://www.health.gov.au/our‐work/residential‐aged‐care (viewed Apr 2025).
21. Australian Department of Health and Aged Care. Home care packages program. Updated 7 Mar 2025. https://www.health.gov.au/our‐work/home‐care‐packages‐program (viewed Mar 2025).
22. Registry of Senior Australians. Registry of Senior Australians (ROSA) Research Centre. In: Registry of Senior Australians (ROSA) Research Centre. Undated. https://sahmri.org.au/research/programs/registry‐centre/groups/rosa/rosa‐oms (viewed Mar 2024).
23. Benchimol EI, Smeeth L, Guttmann A, et al. RECORD Working Committee. The REporting of studies Conducted using Observational Routinely‐collected health Data (RECORD) statement. PLoS Med 2015; 12: e1001885.
24. Australian Bureau of Statistics. Australian Statistical Geography Standard (ASGS), volume 5: remoteness structure, July 2016 (1270.0.55.005). 16 Mar 2018. https://www.abs.gov.au/ausstats/abs@.nsf/mf/1270.0.55.005 (viewed June 2025).
25. Australian Institute of Health and Welfare. Measuring quality in aged care: what is known now and what data are coming. In: Australia's welfare 2023; data insights; pp. 215‐250. 7 Sept 2023. https://www.aihw.gov.au/getmedia/f897ee10‐7d55‐4d05‐b8c3‐97a75547063f/aihw‐aus‐246_Chapter_8.pdf (viewed Mar 2024).
26. Caughey GE, Sluggett JK, Lang C, et al. National monitoring of medication‐related quality of care in residential aged care: is Australia making progress? J Am Med Dir Assoc 2022; 23: 2034‐2035.
27. Mehta HB, Kuo Y‐F, Raji MA, et al. State variation in chronic opioid use in long‐term care nursing home residents. J Am Med Dir Assoc 2021; 22: 2593‐2599.
28. Dowd LA, Reynolds L, Cross AJ, et al. A systematic review of opioid prevalence in Australian residential aged care facilities. Australas J Ageing 2022; 41: 501‐512.
29. Australian Commission on Safety and Quality in Health Care. Opioid medicines dispensing, all ages, from 2016–17 to 2020–21. 2022. https://www.safetyandquality.gov.au/our‐work/healthcare‐variation/opioid‐medicines‐dispensing‐all‐ages‐2016‐17‐2020‐21 (viewed June 2025).
30. Australian Commission on Safety and Quality in Health Care. The third Australian atlas of healthcare variation. 2018. https://www.safetyandquality.gov.au/sites/default/files/migrated/The‐Third‐Australian‐Atlas‐of‐Healthcare‐Variation‐2018.pdf (viewed Mar 2024).
31. Australian Commission on Safety and Quality in Health Care. Antipsychotic medicines dispensing, 65 years and over, from 2016–17 to 2020–21. 2002. https://www.safetyandquality.gov.au/our‐work/healthcare‐variation/antipsychotic‐medicines‐dispensing‐65‐years‐and‐over‐2016‐17‐2020‐21 (viewed June 2025).
32. Sluggett JK, Caughey GE, Air T, et al. Provision of a comprehensive medicines review is associated with lower mortality risk for residents of aged care facilities: a retrospective cohort study. Age Ageing 2022; 51: afac149.
33. Andrew NE, Ung D, Olaiya MT, et al. The population effect of a national policy to incentivize chronic disease management in primary care in stroke: a population‐based cohort study using an emulated target trial approach. Lancet Reg Health West Pac 2023; 34: 100723.
34. Vitry AI, Roughead EE, Ramsay EN, et al. Chronic disease management: does the disease affect likelihood of care planning? Aust Health Rev 2012; 36: 419‐423.
35. Sluggett JK, Caughey GE, Air T, et al. Medicines use before and after comprehensive medicines review among residents of long‐term care facilities: a retrospective cohort study. BMC Geriatr 2022; 22: 493.
36. Sluggett JK, Bell JS, Lang C, et al. Variation in provision of collaborative medication reviews on entry to long‐term care facilities. J Am Med Dir Assoc 2021; 22: 148‐155.
37. Australian Department of Health, Disability and Ageing. Upcoming changes to MBS chronic disease management arrangements. Updated 26 Sept 2024. https://www.health.gov.au/our‐work/upcoming‐changes‐to‐mbs‐chronic‐disease‐management‐arrangements (viewed May 2025).
38. Jorgensen M, Siette J, Georgiou A, Westbrook JI. Longitudinal variation in pressure injury incidence among long‐term aged care facilities. Int J Qual Health Care 2018; 30: 684‐691.
39. Gruneir A, Bronskill SE, Newman A, et al. Variation in emergency department transfer rates from nursing homes in Ontario, Canada. Healthc Policy 2016; 12: 76‐88.
40. Chen Y, Briesacher BA, Field TS, et al. Unexplained variation across US nursing homes in antipsychotic prescribing rates. Arch Intern Med 2010; 170: 89‐95.
41. Zanichelli V, Monnier AA, Gyssens IC, et al. Variation in antibiotic use among and within different settings: a systematic review. J Antimicrob Chemother 2018; 73: vi17‐vi29.
42. Bell S, Bhat R, Brennan S, et al. Clinical practice guidelines for the appropriate use of psychotropic medications in people living with dementia and in residential aged care: summary of recommendations and good practice statements. Apr 2023. https://www.monash.edu/__data/assets/pdf_file/0005/3458417/Clinical‐Practice‐Guideline‐for‐the‐Appropriate‐Use‐of‐Psychotropic‐Medications‐in‐People‐Living‐with‐dementia‐and‐in‐Residential‐Aged‐Care.pdf (viewed Jan 2025).
43. Australian Department of Health and Aged Care. Support at Home program handbook. Program details for 1 July 2025. Dec 2024. https://www.health.gov.au/sites/default/files/2025‐02/support‐at‐home‐program‐handbook.pdf (viewed May 2025)
44. Australian Institute of Health Welfare. Admitted patient care 2017–18 (HSE 225). 23 May 2019. https://www.aihw.gov.au/reports/hospitals/admitted‐patient‐care‐2017‐18/data (viewed Mar 2024).
45. Australian Bureau of Statistics. Hospital output measures in the Australian national accounts: experimental estimates, 2004–05 to 2017–18. 28 Sept 2020. https://www.abs.gov.au/statistics/research/hospital‐output‐measures‐australian‐national‐accounts‐experimental‐estimates‐2004‐05‐2017‐18 (viewed Mar 2024).

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Research

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Trends in adolescent smoking prevalence before and after the emergence of vaping in Australia: an interrupted time series analysis, 1999–2023

Sam J Egger, Michael David, Marianne F Weber, Qingwei Luo, Anita Dessaix and Becky Freeman

Med J Aust || doi: 10.5694/mja2.70000
Published online: 27 July 2025

ARTICLE
AUTHORS
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Abstract

Objective: To compare adolescent smoking trends in Australia before and after the emergence of e‐cigarettes in about 2010, to evaluate the potential impacts of adolescent vaping on smoking prevalence.

Design: Repeated cross‐sectional study.

Setting: Australian secondary schools.

Participants: 172 406 students aged 12–17 years who took part in the Australian Secondary Students’ Alcohol and Drug Survey between 1999 and 2023.

Main outcome measures: Prevalence of ever, past year, past month and past week smoking for 12–17‐year‐olds, and daily smoking for 14–15‐year‐olds.

Results: From 2014 to 2022–2023, the prevalence of ever vaping among students increased 2.3‐fold (from 13.2% to 29.9%), while past month vaping increased 4.8‐fold (from 3.3% to 15.7%). From 1999 to 2022–2023, there were substantial declines in the prevalence of ever, past year, past month, past week and daily smoking among students, with reductions ranging between 74% and 89%. However, the rates of decline for these five measures of smoking slowed significantly from 2010 onwards, coinciding with the emergence of vaping. By 2022–2023, there were, respectively, 74 (95% confidence interval [CI], 67–80), 54 (95% CI, 48–60), 25 (95% CI, 21–29) and 16 (95% CI, 12–19) more 12–17‐year‐olds per 1000, and 7 (95% CI, 4–9) more 14–15‐year‐olds per 1000 who had engaged in ever, past year, past month, past week and daily smoking than projected by smoking trajectories from the pre‐vaping era. These findings were robust to sensitivity analyses, including the use of different time series interruption points (change‐years) and controlling for the affordability of cigarettes.

Conclusion: Australia's remarkable progress in reducing adolescent smoking has slowed since the emergence of vaping, underscoring the need for integrated tobacco and vaping control strategies.

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1 Daffodil Centre, University of Sydney, Sydney, NSW
2 University of Sydney, Sydney, NSW
3 Cancer Council New South Wales, Sydney, NSW

Correspondence: samuel.egger@sydney.edu.au

Open access:

Open access publishing facilitated by The University of Sydney, as part of the Wiley – The University of Sydney agreement via the Council of Australian University Librarians.

Data Sharing:

All data used in the current analyses are population‐level and publicly available.

Acknowledgements:

We thank Alecia Brooks, Emily Jenkinson, Ciara Madigan and the Generation Vape study team at Cancer Council NSW for their invaluable support and advice.

Competing interests:

Sam Egger is funded by an Australian Government scholarship. Becky Freeman has received payments to her institution from Cancer Council NSW, the Medical Research Future Fund, the National Health and Medical Research Council, the Ian Potter Foundation and NSW Health. She has also received consulting fees from the World Health Organization, NSW Health, Cancer Council Australia and the Sax Institute, and payments for lectures, presentations and educational events from the Department of Health, Government of the Hong Kong Special Administrative Region. She has been reimbursed for travel expenses related to her attendance at several conferences, including the Oceania Tobacco Control Conference, the Australian Public Health Conference, the Australasian Epidemiological Association Annual Scientific Meeting and others. She has served as an unpaid expert advisor to the Cancer Council Australia's Tobacco Issues Committee, a paid expert member of the NHMRC Electronic Cigarettes Working Committee, an unpaid advisor to the Vaping Communications Advisory Panel, and an unpaid expert member of the New South Wales Chief Health Officer's E‐cigarette Expert Panel. All other authors declare no potential conflicts of interest.

Author contribution:

Egger SJ: Conceptualization, data curation, formal analysis, writing – original draft, writing – review and editing. David M: Writing – review and editing. Weber MF: Writing – review and editing. Luo Q: Writing – review and editing. Dessaix A: Writing – review and editing. Freeman B: Writing – review and editing.

1. Australian Institute of Health and Welfare. Data tables: National Drug Strategy Household Survey 2022–2023 – 2. Tobacco smoking. Canberra: AIHW, 2024. https://www.aihw.gov.au/reports/illicit‐use‐of‐drugs/national‐drug‐strategy‐household‐survey/data (viewed Apr 2025).
2. Freeman B. Reigniting tobacco control: returning Australia to the front of the pack. Public Health Res Pract 2023; 33: e3312304.
3. Greenhalgh EM, Scollo MM, Winstanley MH. The pricing and taxation of tobacco products in Australia. In: Greenhalgh EM, Scollo MM, Winstanley MH, editors. Tobacco in Australia: facts and issues. Melbourne: Cancer Council Victoria, 2024. https://www.tobaccoinaustralia.org.au/chapter‐13‐taxation (viewed Apr 2025).
4. Scollo M, Bayly M. Tobacco advertising and promotion. In: Greenhalgh EM, Scollo MM, Winstanley MH, editors. Tobacco in Australia: facts and issues. Melbourne: Cancer Council Victoria, 2024. https://www.tobaccoinaustralia.org.au/chapter‐11‐advertising (viewed Apr 2025).
5. Scollo M, Bayly M. Smokefree environments. In: Greenhalgh EM, Scollo MM, Winstanley MH, editors. Tobacco in Australia: facts and issues. Melbourne: Cancer Council Victoria, 2024. https://www.tobaccoinaustralia.org.au/chapter‐15‐smokefree‐environment (viewed Apr 2025).
6. Australian Institute of Health and Welfare. Tobacco chapter, supplementary data tables, Table 3.16. In: National Drug Strategy Household Survey 2016: detailed findings. Canberra: AIHW, 2017. https://www.aihw.gov.au/reports/illicit‐use‐of‐drugs/2016‐ndshs‐detailed/data (viewed Apr 2025).
7. Australian Institute of Health and Welfare. Data tables: National Drug Strategy Household Survey 2022–2023 – 3. Electronic cigarettes and vapes. Canberra: AIHW; 2024. https://www.aihw.gov.au/reports/illicit‐use‐of‐drugs/national‐drug‐strategy‐household‐survey/data (viewed Apr 2025).
8. Banks E, Yazidjoglou A, Brown S, et al. Electronic cigarettes and health outcomes: systematic review of global evidence. Report for the Australian Department of Health. Canberra: National Centre for Epidemiology and Population Health, 2022. https://www.nhmrc.gov.au/sites/default/files/documents/attachments/ecigarettes/Electronic_cigarettes_and_health_outcomes_%20systematic_review_of_evidence.pdf (viewed Apr 2025).
9. O’Brien D, Long J, Quigley J, et al. Association between electronic cigarette use and tobacco cigarette smoking initiation in adolescents: a systematic review and meta‐analysis. BMC Public Health 2021; 21: 954.
10. Yoong SL, Hall A, Turon H, et al. Association between electronic nicotine delivery systems and electronic non‐nicotine delivery systems with initiation of tobacco use in individuals aged < 20 years: a systematic review and meta‐analysis. PLoS One 2021; 16: e0256044.
11. Egger S, David M, Watts C, et al. The association between vaping and subsequent initiation of cigarette smoking in young Australians from age 12 to 17 years: a retrospective cohort analysis using cross‐sectional recall data from 5114 adolescents. Aust N Z J Public Health 2024; 10: 100173.
12. Scully M, Bain E, Koh I, et al. ASSAD 2022–2023: Australian secondary school students’ use of tobacco and e‐cigarettes. Melbourne: Cancer Council Victoria, 2023. https://www.health.gov.au/sites/default/files/2024‐04/australian‐secondary‐school‐students‐use‐of‐tobacco‐and‐e‐cigarettes‐2022‐2023.pdf (viewed Apr 2025).
13. Guerin N, White V. ASSAD 2017 statistics and trends: trends in substance use among Australian secondary students. 2nd ed. Melbourne: Cancer Council Victoria, 2020. https://www.health.gov.au/sites/default/files/documents/2020/07/trends‐in‐substance‐use‐among‐australian‐secondary‐school‐students‐1996‐2017.pdf (viewed Apr 2025).
14. Greenhalgh EM, Jenkins S, Bain E, Winstanley MH. 1.6 Prevalence of smoking — teenagers. In: Greenhalgh EM, Scollo MM, Winstanley MH, editors. Tobacco in Australia: facts and issues. Melbourne: Cancer Council Victoria, 2024. http://www.tobaccoinaustralia.org.au/chapter‐1‐prevalence/1‐6‐prevalence‐of‐smoking‐teenagers (viewed Apr 2025).
15. Bayly M, Scollo MM. 13.5 How affordable are cigarettes in Australia? In: Greenhalgh EM, Scollo MM, Winstanley MH, editors. Tobacco in Australia: facts and issues. Melbourne: Cancer Council Victoria, 2024. https://www.tobaccoinaustralia.org.au/chapter‐13‐taxation/13‐5‐how‐affordable‐are‐cigarettes‐in‐australia (viewed Apr 2025).
16. Dutra LM, Glantz SA. E‐cigarettes and national adolescent cigarette use: 2004–2014. Pediatrics 2017; 139: e20162450.
17. Levy DT, Warner KE, Cummings KM, et al. Examining the relationship of vaping to smoking initiation among US youth and young adults: a reality check. Tob Control 2019; 28: 629‐635.
18. Hallingberg B, Maynard OM, Bauld L, et al. Have e‐cigarettes renormalised or displaced youth smoking? Results of a segmented regression analysis of repeated cross sectional survey data in England Scotland and Wales. Tob Control 2020; 29: 207‐216.
19. Tattan‐Birch H, Brown J, Shahab L, et al. Trends in vaping and smoking following the rise of disposable e‐cigarettes: a repeat cross‐sectional study in England between 2016 and 2023. Lancet Reg Health Eur 2024; 42: 100924.
20. Egger S, David M, McCool J, et al. Trends in smoking prevalence among 14–15‐year‐old adolescents before and after the emergence of vaping in New Zealand: an interrupted time series analysis of repeated cross‐sectional data, 1999–2023. Lancet Reg Health West Pac 2025; 56: 101522.
21. Taljaard M, McKenzie JE, Ramsay CR, Grimshaw JM. The use of segmented regression in analysing interrupted time series studies: an example in pre‐hospital ambulance care. Implement Sci 2014; 9: 77.
22. Mascha EJ, Sessler DI. Segmented regression and difference‐in‐difference methods: assessing the impact of systemic changes in health care. Anesth Analg 2019; 129: 618‐633.
23. West R, Beard E, Brown J. Trends in electronic cigarette use in England. Smoking Toolkit Study. London: University College London, 2018. https://clivebates.com/documents/CRUKWest.pdf (viewed Apr 2025).
24. Cullen KA, Ambrose BK, Gentzke AS, et al. Use of electronic cigarettes and any tobacco product among middle and high school students — United States, 2011–2018. MMWR Morb Mortal Wkly Rep 2018; 67: 1276‐1277.
25. Thiese MS. Observational and interventional study design types; an overview. Biochem Med (Zagreb) 2014; 24: 199‐210.
26. Friis RH, Sellers T. Epidemiology for public health practice. Burlington, Mass: Jones & Bartlett Learning, 2020.
27. Mendelsohn CP, Hall W, Borland R, et al. A critique of the Australian National Health and Medical Research Council CEO statement on electronic cigarettes. Addiction 2023; 118: 1184‐1192.
28. Scollo M, Hippolyte D, Miller C. What has been the impact of pictorial health warnings in Australia? In: Greenhalgh EM, Scollo MM, Winstanley MH, editors. Tobacco in Australia: facts and issues. Melbourne: Cancer Council Victoria, 2019. https://www.tobaccoinaustralia.org.au/chapter‐12‐tobacco‐products/attachment‐12‐1‐health‐warnings/12a‐5‐the‐impact‐of‐graphic‐warnings‐in‐australia (viewed Apr 2025).
29. Grogan P, Banks E. Far from ‘mission accomplished’: time to re‐energise tobacco control in Australia. Public Health Res Pract 2020; 30: e3032016.
30. De Chaisemartin C, d’Haultfoeuille X. Fuzzy differences‐in‐differences. Rev Econ Stud 2018; 85: 999‐1028.
31. van Leeuwen FD, Lugtig P, Feskens R. The performance of interrupted time series designs with a limited number of time points: learning losses due to school closures during the COVID‐19 pandemic. PLoS One 2024; 19: e0301301.

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A salute to ten years of Australian Clinical Care Standards: celebrations and challenges

Alice L Bhasale, Carolyn Hullick, Maria B Sukkar and Anne Duggan

Med J Aust || doi: 10.5694/mja2.52697
Published online: 28 July 2025

ARTICLE
AUTHORS
REFERENCES

Topics

Health services administration

The Australian Commission on Safety and Quality in Health Care (hereafter, the Commission) published the first national Clinical Care Standard on antimicrobial stewardship ten years ago. In the decade since, 19 Clinical Care Standards have been developed and maintained by the Commission in line with the latest evidence (https://www.safetyandquality.gov.au/standards/clinical‐care‐standards/10th‐anniversary‐clinical‐care‐standards/timeline‐clinical‐care‐standards). Clinical Care Standards have become an integral part of the Australian health care quality improvement landscape with substantial impact on processes of care and patient outcomes (https://www.safetyandquality.gov.au/standards/clinical‐care‐standards). At this ten‐year anniversary, it is timely to reflect on what has been achieved by the standards, as well as future challenges and opportunities.

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Australian Commission on Safety and Quality in Healthcare, Sydney, NSW

Correspondence: maria.sukkar@safetyandquality.gov.au

Competing interests:

No relevant disclosures.

Author contribution statement:

Alice Bhasale: Conceptualization, writing ‐ original draft, writing ‐ review and editing. Carolyn Hullick: Conceptualization, writing ‐ review and editing. Maria B Sukkar: Conceptualization, writing ‐ review and editing. Anne Duggan: Conceptualization.

1. Australian Commission on Safety and Quality in Health Care. Fact sheet 11: Applicability of clinical care standards. ACSQHC. https://www.safetyandquality.gov.au/publications‐and‐resources/resource‐library/fact‐sheet‐11‐applicability‐clinical‐care‐standards (viewed Apr 2025).
2. Australian Commission on Safety and Quality in Health Care. Delivering on ‘right care, right place, right time’. How clinical care standards are improving health care in Australia: An evaluation report. ACSQHC, 2023. https://www.safetyandquality.gov.au/sites/default/files/2023‐05/how_clinical_care_standards_are_improving_health_care_in_australia_‐_an_evaluation_report.pdf (viewed Apr 2025).
3. Harvey L, Taylor ME, Harris IA, et al. Adherence to clinical care standards and mortality after hip fracture surgery in New South Wales, 2015‐2018: a retrospective population‐based study. Med J Aust 2024; 221: 480‐485. https://www.mja.com.au/journal/2024/221/9/adherence‐clinical‐care‐standards‐and‐mortality‐after‐hip‐fracture‐surgery‐new
4. Curtis K, McKenzie J, Melville G, et al. Implementation evaluation of an early notification care bundle for patients with hip fracture (eHIP). Gerontology 2024; 70:536‐543.
5. Australian Commission on Safety and Quality in Health Care. Hospital‐acquired complications (HACs) [website]. ACSQHC, 2021. https://www.safetyandquality.gov.au/our‐work/indicators‐measurement‐and‐reporting/hospital‐acquired‐complications‐hacs (viewed Apr 2025).
6. Australian Commission on Safety and Quality in Health Care. AURA 2023: Fifth Australian report on antimicrobial use and resistance in human health. ACSQHC, 2023. https://www.safetyandquality.gov.au/our‐work/antimicrobial‐resistance/antimicrobial‐use‐and‐resistance‐australia‐aura/aura‐2023‐fifth‐australian‐report‐antimicrobial‐use‐and‐resistance‐human‐health (viewed Apr 2025).
7. Giles G, Buchan H, Hullick C, et al. What next for the Australian Atlas of Healthcare Variation series? Focusing the system on appropriate and sustainable health care. Res Health Serv Reg 2024; 3: 20.
8. Xu HG, Rickard CM, Takashima M, et al. Exploring Australian emergency department clinicians’ knowledge, attitudes and adherence to the national peripheral intravenous catheter clinical care standard: a cross‐sectional national survey. Emerg Med Australas 2023; 35: 759‐770.
9. Truter P, Attwooll L, Flanagan P, et al. Comparing multi‐disciplinary low back pain care in the ED to the Australian clinical care standard: the possible influence of profession, experience and back pain beliefs. Int Emerg Nurs 2023; 71: 101351.
10. Teo PL, Bennell KL, Lawford B, et al. Patient experiences with physiotherapy for knee osteoarthritis in Australia ‐ a qualitative study. BMJ Open 2021; 11: e043689.
11. Yeoh K, George C, Rajkhowa A, Buising K. Assessing patient understanding of their antimicrobial treatment: how are we doing and how might we improve? Infect Dis Health 2020; 25: 302‐308.
12. Behrens G, Skellern M, McGushin A, et al. Making climate change a national health priority: Australia's first National Health and Climate Strategy. Med J Aust 2025; 222: 63‐65. https://www.mja.com.au/journal/2025/222/2/making‐climate‐change‐national‐health‐priority‐australias‐first‐national‐health
13. Australian Commission on Safety and Quality in Health Care. Joint Statement on Climate Change and Health [website]. ACSQHC, 2024. https://www.safetyandquality.gov.au/newsroom/joint‐statement‐climate‐change‐and‐health (viewed Apr 2025).
14. Maher CG, Archambeau A, Buchbinder R, et al. Introducing Australia's clinical care standard for low back pain. Med J Aust 2023; 218: 354‐356. https://www.mja.com.au/journal/2023/218/8/introducing‐australias‐clinical‐care‐standard‐low‐back‐pain
15. Ackerman IN, Doukas F, Buchbinder R, et al. Ensuring a fit‐for‐purpose resource for consumers, clinicians and health services: the updated osteoarthritis of the knee clinical care standard. J Physiother 2024; 70: 247‐250.

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Research letter

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Symptom burden, quality of life, and diagnostic journey of people with postural orthostatic tachycardia syndrome, Australia, 2021–24: a descriptive patient registry data study

Marie‐Claire Seeley, Gemma Wilson, Eric Ong, Amy Langdon, Jonathan Chieng, Danielle Bailey, Kristina Comacchio, Amanda Page, Dennis H Lau and Celine Gallagher

Med J Aust || doi: 10.5694/mja2.52710
Published online: 21 July 2025

ARTICLE
AUTHORS
REFERENCES

Topics

Nervous system diseases

General medicine

Infectious diseases

Postural orthostatic tachycardia syndrome (POTS) is a multisystem autonomic disorder; its aetiology is poorly understood, and it is associated with significant disability.1 In this article, we report our analysis of Australian POTS Patient Registry data, with the aim of exploring the symptom burden, quality of life, and diagnostic journey of people in Australia with POTS.

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1 Australian Dysautonomia and Arrhythmia Research Collaborative, the University of Adelaide, Adelaide, SA
2 South Australian Health and Medical Research Institute, Adelaide, SA
3 The University of Adelaide, Adelaide, SA
4 Royal Adelaide Hospital, Adelaide, SA

Correspondence: celine.gallagher@adelaide.edu.au

Open access:

Open access publishing facilitated by the University of Adelaide, as part of the Wiley – the University of Adelaide agreement via the Council of Australian University Librarians.

Data Sharing:

The de‐identified data we analysed are not publicly available, but requests to the corresponding author for the data will be considered on a case‐by‐case basis.

Received 23 September 2024, accepted 24 March 2025

Acknowledgements:

Gemma Wilson is supported by a Research Training Program scholarship from the University of Adelaide. Celine Gallagher is supported by a research grant from the Australian POTS Foundation. The funding sources did not have any role in the planning, writing, or publication of the work or any role in study design, data collection, analysis or interpretation, reporting, or publication.

Competing interests:

Marie‐Claire Seeley has received consulting fees from Argenx, paid to the Australian POTS Foundation. Dennis Lau has received lecture and consulting fees from Abbott Medical, Biotronik, Medtronic, and MicroPort CRM, paid to the University of Adelaide.

1. Seeley MC, Gallagher C, Ong E, et al. Poor health‐related quality of life in postural orthostatic tachycardia syndrome in comparison with a sex‐ and age‐matched normative population. Clin Auton Res 2023; 33: 469‐477.
2. Raj SR, Guzman JC, Harvey P, et al. Canadian Cardiovascular Society Position Statement on postural orthostatic tachycardia syndrome (POTS) and related disorders of chronic orthostatic intolerance. Can J Cardiol 2020; 36: 357‐372.
3. Sletten DM, Suarez GA, Low PA, et al. COMPASS 31: a refined and abbreviated Composite Autonomic Symptom Score. Mayo Clinic Proc 2012; 87: 1196‐1201.
4. Devlin NJ, Shah KK, Feng Y, et al. Valuing health‐related quality of life: an EQ‐5D‐5L value set for England. Health Econ 2018; 27: 7‐22.
5. Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap). A metadata‐driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42: 377‐381.
6. Shaw BH, Stiles LE, Bourne K, et al. The face of postural tachycardia syndrome: insights from a large cross‐sectional online community‐based survey. J Intern Med 2019; 286: 438‐448.
7. Kwan AC, Ebinger JE, Wei J, et al. Apparent risks of postural orthostatic tachycardia syndrome diagnoses after COVID‐19 vaccination and SARS‐CoV‐2 infection. Nat Cardiovasc Res 2022; 1: 1187‐1194.
8. Seeley MC, Gallagher C, Ong E, et al. High incidence of autonomic dysfunction and postural orthostatic tachycardia syndrome in patients with long COVID: Implications for management and health care planning. Am J Med 2025; 138: 354‐361.

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Ethics and law

Implementing voluntary assisted dying in New South Wales correctional settings

Diya Ahluwalia and Leigh Haysom

Med J Aust 2025; 223 (2): . || doi: 10.5694/mja2.52688
Published online: 21 July 2025

ARTICLE
AUTHORS
REFERENCES

Topics

Ethics and law

Palliative care

Social determinants of health

New South Wales was the last Australian state to pass voluntary assisted dying (VAD) legislation, effective on 28 November 2023.1 The Justice Health and Forensic Mental Health Network (JHNSW) is responsible for the health care of people in contact with the criminal justice system in NSW (www.nsw.gov.au/health/justicehealth/) and was tasked with implementing a VAD pathway for prisoners. A steering committee was formed with the Corrective Services NSW (CSNSW; https://correctiveservices.dcj.nsw.gov.au/), the local health district, the CSNSW Inmate Consumer Referent Group, the Mental Health Review Tribunal (https://mhrt.nsw.gov.au/the‐tribunal/), the JHNSW Clinical Ethics Committee, the Victims Support Scheme and the Aboriginal Health and Medical Research Council of NSW (www.ahmrc.org.au) to create dignified and culturally safe pathways for prisoners to access VAD. The ethical and legal challenges of integrating VAD into the NSW correctional settings are highlighted below, with a hypothetical patient journey demonstrating the pathway.

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1 Justice Health and Forensic Mental Health Network, Sydney, NSW
2 University of Newcastle, Newcastle, NSW

Correspondence: leigh.haysom@health.nsw.gov.au

Open access:

Open access publishing facilitated by The University of Newcastle, as part of the Wiley – The University of Newcastle agreement via the Council of Australian University Librarians.

Competing interests:

No relevant disclosures.

Author contributions:

Ahluwalia D: Project administration, resources, writing – original draft. Haysom L: Supervision, visualization, writing – review and editing.

1. Parliament of New South Wales. Voluntary Assisted Dying Act 2022 (Act number 17), current version for 29 November 2023. https://legislation.nsw.gov.au/view/html/inforce/current/act‐2022‐017 (viewed May 2025).
2. United Nations Office on Drugs and Crime. The United Nations standard minimum rules for the treatment of prisoners (the Nelson Mandela rules). UNODC, 2015. https://www.unodc.org/documents/justice‐and‐prison‐reform/Nelson_Mandela_Rules‐E‐ebook.pdf (viewed May 2025).
3. Parliament of New South Wales. Crimes (Administration of Sentences) Act 1999 (Act number 93), current version for 19 February 2024. https://legislation.nsw.gov.au/view/html/inforce/current/act‐1999‐093 (viewed May 2025).
4. Pemberton L, Panozzo S, Philip J. Call to end shackling of hospitalized palliative prisoner patients. Med J Aust 2024; 220: 304‐306. https://www.mja.com.au/journal/2024/220/6/call‐end‐shackling‐hospitalised‐palliative‐prisoner‐patients
5. NSW Bureau of Crime Statistics and Research. Aboriginal over‐representation in the NSW criminal justice system quarterly update June 2024. BOCSAR, 2024. https://bocsar.nsw.gov.au/documents/publications/aboriginal‐or/aor‐2024/cjs‐aboriginal‐over‐representation‐quarterly‐jun‐2024.pdf (viewed Jan 2025).
6. NSW Health Information for Aboriginal communities, https://www.health.nsw.gov.au/voluntary‐assisted‐dying/Pages/aboriginal‐communities.aspx (viewed May 2025).
7. NSW Government Justice Health and Forensic Mental Health Network. The Forensic Hospital: professional visitor information brochure. https://www.nsw.gov.au/sites/default/files/noindex/2024‐08/Visitor‐Information‐Forensic‐Hospital.pdf (viewed Jan 2025).
8. Parliament of New South Wales. Mental Health and Cognitive Impairment Forensic Provisions Act 2020 (Act number 12), current version for 2 May 2025. https://legislation.nsw.gov.au/view/html/inforce/current/act‐2020‐012 (viewed May 2025).
9. Parliament of New South Wales. Coroners Act 2009 (Act number 41), current version for 21 November 2024. https://legislation.nsw.gov.au/view/html/inforce/current/act‐2009‐041 (viewed May 2025).
10. Van der Kaap‐Deeder J, Audenaert E, Vandevelde S, et al. Choosing when choices are limited: the role of perceived afforded choice and autonomy in prisoners’ well‐being. Law Hum Behav 2017; 41: 567‐578.
11. Baidawi S, Turner S, Trotter C, et al. Older prisoners: a challenge for Australian corrections. Trends & issues in crime and criminal justice no. 426. Canberra: Australian Institute of Criminology, 2011. https://doi.org/10.52922/ti260944 (viewed May 2025).
12. Messinger K. Death with dignity for the seemingly undignified: denial of aid in dying in prison. J Crim Law Criminol 2019; 109: 633.
13. NSW Government NSW Health. NSW Voluntary Assisted Dying Clinical Practice Handbook. Version 2. Sydney: NSW Health, 2023. https://www.health.nsw.gov.au/voluntary‐assisted‐dying/Publications/practitioner‐handbook.pdf (viewed May 2025).
14. Parliament of New South Wales. Victims Rights and Support Act 2013 (Act number 37), current version for 1 February 2025. https://legislation.nsw.gov.au/view/whole/html/inforce/current/act‐2013‐037 (viewed May 2025).
15. Australian Bureau of Statistics. Prisoners in Australia. Canberra: ABS, 2024. https://www.abs.gov.au/statistics/people/crime‐and‐justice/prisoners‐australia/latest‐release (viewed May 2025).
16. Government of South Australia SA Health. Voluntary assisted dying statistics 2023‐24 (Voluntary Assisted Dying Board Annual Report 2023‐24). Adelaide: SA Health. https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/about+us/publications+and+resources/reports/annual+reports/voluntary+assisted+dying+board/2023‐24/voluntary+assisted+dying+statistics+2023‐24+vad+2023‐24 (viewed May 2025).
17. Parliament of South Australia. South Australia Coroners Act 2003 (version 31.1.2023). Part 1, s3 (2(a)). https://www.legislation.sa.gov.au/__legislation/lz/c/a/coroners%20act%202003/current/2003.33.auth.pdf (viewed May 2025).

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Research

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The incidence of and risk factors for hospitalisations and amputations for people with diabetes‐related foot ulcers in Queensland, 2011–19: an observational cohort study

Yuqi Zhang, Susanna M Cramb, Steven M McPhail, Rosana Pacella, Jaap J Netten, Ewan M Kinnear and Peter A Lazzarini

Med J Aust || doi: 10.5694/mja2.52703
Published online: 14 July 2025

ARTICLE
AUTHORS
REFERENCES

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Endocrine system diseases

Musculoskeletal diseases

Surgical procedures, operative

General medicine

Abstract

Objectives: To assess the incidence, risk factors, and length of stay for hospitalisations, with and without amputations, of people with diabetes‐related foot ulcers (DFU).

Study design: Prospective observational cohort study; secondary analysis of linked Diabetic Foot Services and Queensland Hospital Admitted Patient Data Collection data.

Settings, participants: All people with DFU who visited any of 65 outpatient Diabetic Foot Service clinics in Queensland for the first time during 1 July 2011 – 31 December 2017, followed until first DFU‐related hospitalisation, ulcer healing, or death, censored at 24 months.

Main outcome measures: First overnight hospitalisations for which the principal diagnosis was DFU‐related (International Statistical Classification of Diseases, tenth revision, Australian modification; Australian Classification of Health Interventions codes), by amputation procedure type (none, minor [distal to ankle], major [proximal to ankle]).

Results: Among 4709 people with DFU (median age, 63 years (interquartile range [IQR], 54–72 years); 3275 men [69.5%]; type 2 diabetes, 4284 [91.0%]), DFU‐related hospitalisations were recorded for 977 people (20.7%): 669 without amputations (68.5%), 258 with minor amputations (26.4%), and 50 with major amputations (5.1%). The incidence of first DFU‐related hospitalisations was 50.8 (95% confidence interval [CI], 47.7–54.1) per 100 person‐years lived with DFU before healing, death, or loss to follow‐up. The incidence of first DFU‐related hospitalisation with no amputation was 39.0 (95% CI, 36.2–42.1), with minor amputation 18.0 (95% CI, 17.0–20.0), and with major amputation 5.3 (95% CI, 4.4–6.3) per 100 person‐years with DFU. The median length of stay for DFU‐related hospitalisations was six (IQR, 3–12) days with no amputations, ten (IQR, 5–19) days with minor amputations, and 19 (IQR, 11–38) days with major amputations. The risks of all DFU‐related hospitalisation outcomes were higher for people with deep ulcers or severe peripheral artery disease. The risks of DFU‐related hospitalisation with no amputations were also greater for people aged 37–59 years than for those aged 60 years, and for people with cardiovascular disease, infections, or previous amputations; with minor amputations for people who smoked, had end‐stage renal disease, previous amputations, moderate to severe infections, or peripheral artery disease, or who were not receiving knee‐high offloading or DFU debridement treatments; and with major amputations for people with end‐stage renal disease, peripheral artery disease, or larger ulcers.

Conclusions: The incidence of DFU‐related hospitalisations among people with DFU was high, and most did not involve amputations. Risk factor profiles differed between hospitalisations with or without amputation procedures. Our findings could assist services determine which people with DFU would benefit most from intensive interventions, potentially averting large numbers of diabetes‐related hospitalisations.

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1 Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD
2 Karolinska Institute, Stockholm, Sweden
3 Jamieson Trauma Institute, Metro North Hospital and Health Service, Brisbane, QLD
4 Metro South Health, Brisbane, QLD
5 Institute for Lifecourse Development, University of Greenwich, London, United Kingdom
6 University of Amsterdam, Amsterdam, The Netherlands
7 The Prince Charles Hospital, Metro North Hospital and Health Service, Brisbane, QLD

Correspondence: peter.lazzarini@health.qld.gov.au

Correspondence: peter.lazzarini@qut.edu.au

Open access:

Open access publishing facilitated by Queensland University of Technology, as part of the Wiley – Queensland University of Technology agreement via the Council of Australian University Librarians.

Data Sharing:

The data that support the findings of this study are not publicly available but will be shared after approval by the relevant ethics committees and data custodians: the Queensland Statewide Diabetes Clinical Network and the Queensland Health Statistical Services Branch (https://www.health.qld.gov.au/hsu/research).

Received 10 May 2024, accepted 6 January 2025

Acknowledgements:

This study was supported by the Chinese Scholarship Council, a Centre for Data Science (Queensland University of Technology) write‐up scholarship, and the National Health and Medical Research Council (NHMRC; 1143435, 1161138, 2008313). The study used the Queensland High Risk Foot Form Database resource. We are most grateful to the Diabetic Foot Working Group, Queensland Statewide Diabetes Clinical Network (Australia), and to the individual centres that provided the data. Susanna M Cramb, Steven M McPhail, and Peter A Lazzarini hold NHMRC Fellowship and Investigator grants; Yuqi Zhang holds a Chinese Scholarship Council PhD grant. The funding sources had no role in study design, collection, analysis, interpretation, writing, or decision to submit the manuscript for publication.

Competing interests:

Peter A Lazzarini and Jaap J van Netten are members respectively of the International Working Group on the Diabetic Foot (IWGDF) working groups and editorial board, which are responsible for authoring international evidence‐based guidelines on diabetes foot disease management. Peter A Lazzarini was also co‐chair of Diabetes Feet Australia and the Australian evidence‐based guidelines for the prevention and management of diabetes‐related foot disease. The authors declare that there are no other relationships or activities that might bias, or be perceived to bias, their work.

1. McDermott K, Fang M, Boulton AJM, et al. Etiology, epidemiology, and disparities in the burden of diabetic foot ulcers. Diabetes Care 2023; 46: 209‐221.
2. Lazzarini PA, Cramb SM, Golledge J, et al. Global trends in the incidence of hospital admissions for diabetes‐related foot disease and amputations: a review of national rates in the 21st century. Diabetologia 2023; 66: 267‐287.
3. Zhang Y, Lazzarini PA, McPhail SM, et al. Global disability burdens of diabetes‐related lower‐extremity complications in 1990 and 2016. Diabetes Care 2020; 43: 964‐974.
4. Lazzarini PA, Raspovic A, Prentice J, et al. Australian evidence‐based guidelines for the prevention and management of diabetes‐related foot disease: a guideline summary. Med J Aust 2023; 2199: 485‐495. https://www.mja.com.au/journal/2023/219/10/australian‐evidence‐based‐guidelines‐prevention‐and‐management‐diabetes‐related
5. Lazzarini PA, van Netten JJ, Fitridge R, et al. Pathway to ending avoidable diabetes‐related amputations in Australia. Med J Aust 2018; 209: 288‐290. https://www.mja.com.au/journal/2018/209/7/pathway‐ending‐avoidable‐diabetes‐related‐amputations‐australia
6. Zhang Y, van Netten JJ, Baba M, et al. Diabetes‐related foot disease in Australia: a systematic review of the prevalence and incidence of risk factors, disease and amputation in Australian populations. J Foot Ankle Res 2021; 14: 8.
7. Australian Institute of Health and Welfare. OECD health care quality and outcomes indicators, Australia 2022–23. Updated 27 Feb 2024. https://www.aihw.gov.au/reports/international‐comparisons/oecd‐health‐care‐indicators‐2022‐23/contents/primary‐care‐avoidable‐hospital‐admissions (viewed Nov 2024).
8. Organisation for Economic Cooperation and Development. Health at a glance 2023: OECD indicators. 7 Nov 2023. https://www.oecd‐ilibrary.org/social‐issues‐migration‐health/health‐at‐a‐glance‐2023_5a6ecc3d‐en (viewed Nov 2024).
9. Ezzatvar Y, García‐Hermoso A. Global estimates of diabetes‐related amputations incidence in 2010–2020: a systematic review and meta‐analysis. Diabetes Res Clin Pract 2022: 110194.
10. Morton JI, Lazzarini PA, Shaw JE, Magliano DJ. Trends in the incidence of hospitalization for major diabetes‐related complications in people with type 1 and type 2 diabetes in Australia, 2010–2019. Diabetes Care 2022; 45: 789‐797.
11. Rodrigues BT, Vangaveti VN, Urkude R, et al. Prevalence and risk factors of lower limb amputations in patients with diabetic foot ulcers: a systematic review and meta‐analysis. Diabetol Metab Syndr 2022; 16: 102397.
12. Lin C, Liu J, Sun H. Risk factors for lower extremity amputation in patients with diabetic foot ulcers: a meta‐analysis. PLoS One 2020; 15: e0239236.
13. Quigley M, Morton JI, Lazzarini PA, et al. Trends in diabetes‐related foot disease hospitalizations and amputations in Australia, 2010 to 2019. Diabetes Res Clin Pract 2022; 194: 110189.
14. Hamilton EJ, Davis WA, Siru R, et al. Temporal trends in incident hospitalization for diabetes‐related foot ulcer in type 2 diabetes: the Fremantle Diabetes Study. Diabetes Care 2021; 44: 722‐730.
15. Alahakoon C, Thanigaimani S, Seng L, et al. A systematic review and meta‐analysis of the incidence and risk factors for re‐admission to hospital in people with diabetes related foot disease. Eur J Vasc Endovasc Surg 2023; 66: 195‐202.
16. Monge L, Gnavi R, Carnà P, et al. Incidence of hospitalization and mortality in patients with diabetic foot regardless of amputation: a population study. Acta Diabetol 2020; 57: 221‐228.
17. Zhang Y, Cramb S, McPhail SM, et al; Diabetic Foot Working Group, Queensland Statewide Diabetes Clinical Network, Australia. Factors associated with healing of diabetes‐related foot ulcers: observations from a large prospective real‐world cohort. Diabetes Care 2021; 44: e143‐e145.
18. Zhang Y, Cramb S, McPhail SM, et al; Diabetic Foot Working Group, Queensland Statewide Diabetes Clinical Network, Australia. Multiple factors predict longer and shorter time‐to‐ulcer‐free in people with diabetes‐related foot ulcers: survival analyses of a large prospective cohort followed‐up for 24‐months. Diabetes Res Clin Pract 2022; 185: 109239.
19. von Elm E, Altman DG, Egger M, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol 2008; 61: 344‐349.
20. van Netten JJ, Bus SA, Apelqvist J, et al; International Working Group on the Diabetic Foot. Definitions and criteria for diabetes‐related foot disease (IWGDF 2023 update). Diabetes Metab Res Rev 2024; 40: e3654.
21. Lazzarini PA, Ng V, Kinnear EM, et al. The Queensland high risk foot form (QHRFF): is it a reliable and valid clinical research tool for foot disease? J Foot Ankle Res 2014; 7: 7.
22. Lambert PC, Roystan P. Further development of flexible parametric models for survival analysis. Stata J 2009; 9: 265‐290.
23. Australian Bureau of Statistics. Australian Statistical Geography Standard (ASGS). Volume 5: Remoteness Structure, July 2016 (1270.0.55.005). 6 Mar 2018. https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/1270.0.55.005Explanatory%20Notes1July%202016?OpenDocument (viewed Nov 2024).
24. Prompers L, Huijberts M, Schaper N, et al. Resource utilisation and costs associated with the treatment of diabetic foot ulcers. Prospective data from the Eurodiale Study. Diabetologia 2008; 51: 1826‐1834.
25. Beckert S, Witte M, Wicke C, et al. A new wound‐based severity score for diabetic foot ulcers; a prospective analysis of 1000 patients. Diabetes Care 2006; 29: 988‐992.
26. Holman N, Young B, Stephens H, Jeffcoate W; Members of the National Foot Care Audit Steering Group. Pilot study to assess measures to be used in the prospective audit of the management of foot ulcers in people with diabetes. Diabet Med 2015; 32: 78‐84.
27. Holman N, Yelland AC, Young B, et al. Mortality rates in people presenting with a new diabetes‐related foot ulcer: a cohort study with implications for management. Diabetologia 2024; 67: 2691‐2701.
28. Kerr M, Barron E, Chadwick P, et al. The cost of diabetic foot ulcers and amputations to the National Health Service in England. Diabet Med 2019; 36: 995‐1002.
29. Shrestha SS, Zhang P, Hora I, et al. Factors contributing to increases in diabetes‐related preventable hospitalization costs among US adults during 2001–2014. Diabetes Care 2019; 42: 77‐84.
30. Australian Institute of Health Welfare. Australia's hospitals at a glance 2020–21. Updated 7 Dec 2022. https://www.aihw.gov.au/getmedia/ded358b4‐ca09‐4559‐bcfc‐df050f5ec206/australia‐s‐hospitals‐at‐a‐glance‐2020‐21.pdf.aspx (viewed Nov 2024).
31. Schaper NC, Van Netten JJ, Apelqvist J, et al. Practical guidelines on the prevention and management of diabetic foot disease (IWGDF 2019 update). Diabetes Metab Res Rev 2020; 36 (Suppl 1): e3266.
32. Jia L, Parker CN, Parker TJ, et al; Diabetic Foot Working Group, Queensland Statewide Diabetes Clinical Network (Australia). Incidence and risk factors for developing infection in patients presenting with uninfected diabetic foot ulcers. PLoS One 2017; 12: e0177916.
33. Aan de Stegge W, Schut MC, Abu‐Hanna A, et al. Development of a prediction model for foot ulcer recurrence in people with diabetes using easy‐to‐obtain clinical variables. BMJ Open Diabetes Res Care 2021; 9: e002257.
34. Lazzarini PA, O’Rourke SR, Russell et al. Reduced incidence of foot‐related hospitalisation and amputation amongst persons with diabetes in Queensland, Australia. PLoS One 2015; 10: e0130609.
35. Hicks CW, Selvarajah S, Mathioudakis N, et al. Burden of infected diabetic foot ulcers on hospital admissions and costs. Ann Vasc Surg 2016; 33: 149‐158.
36. Armstrong DG, Boulton AJM, Bus SA. Diabetic foot ulcers and their recurrence. N Engl J Med 2017; 376: 2367‐2375.
37. Young MJ, McCardle JE, Randall LE, Barclay JI. Improved survival of diabetic foot ulcer patients 1995–2008: possible impact of aggressive cardiovascular risk management. Diabetes Care 2008; 31: 2143‐2147.
38. Jeffcoate W, Game F, Morbach S, et al. Assessing data on the incidence of lower limb amputation in diabetes. Diabetologia 2021; 64: 1442‐1446.
39. Game F. Choosing life or limb. Improving survival in the multi‐complex diabetic foot patient. Diabetes Metab Res Rev 2012; 28: 97‐100.
40. Connelly J, Airey M, Chell S. Variation in clinical decision making is a partial explanation for geographical variation in lower extremity amputation rates. Br J Surg 2001; 88: 529‐535.

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Ethics and law

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Clinicians’ discretion to contact patients’ at‐risk relatives about their genetic risk: new guidance from Australia's privacy regulator provides timely clarification

Jane Tiller and Margaret FA Otlowski

Med J Aust || doi: 10.5694/mja2.52712
Published online: 14 July 2025

ARTICLE
AUTHORS
REFERENCES

Topics

Medical genetics

Ethics and law

Environment and public health

Health services administration

Genetic risk information is relevant not just for individuals who are tested, but also for their blood relatives. Cascade genetic testing of at‐risk relatives can save lives. For younger relatives who can access preventive measures, ensuring they know about the availability of testing is particularly important. Challenges with family communication pose a major barrier to family risk notification.1 Internationally, assisting index cases to notify their at‐risk relatives is considered a public health imperative.1,2,3

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1 Monash University, Melbourne, VIC
2 University of Tasmania, Hobart, TAS

Correspondence: jane.tiller@monash.edu

Open access:

Open access publishing facilitated by Monash University, as part of the Wiley – Monash University agreement via the Council of Australian University Librarians.

Acknowledgements:

Jane Tiller is supported by a National Health and Medical Research Council Investigator Grant (No. 2023/GNT2025900). This funding supported Jane Tiller's work through salary funding.

Competing interests:

No relevant disclosures.

Author contributions:

Tiller J: Conceptualization; writing – original draft. Otlowski MFA: Supervision; writing – review and editing.

1. Roberts MC, Dotson WD, DeVore CS, et al. Delivery of cascade screening for hereditary conditions: a scoping review of the literature. Health Aff (Millwood) 2018; 37: 801‐808.
2. Srinivasan S, Won NY, Dotson WD, et al. Barriers and facilitators for cascade testing in genetic conditions: a systematic review. Eur J Hum Genet 2020; 28: 1631‐1644.
3. Rosén A, Krajc M, Ehrencrona H, Bajalica‐Lagercrantz S. Public attitudes challenge clinical practice on genetic risk disclosure in favour of healthcare‐provided direct dissemination to relatives. Eur J Hum Genet 2024; 32: 6‐7.
4. Varesco L, Di Tano F, Monducci J, et al. Cascade genetic testing in hereditary cancer: exploring the boundaries of the Italian legal framework. Fam Cancer 2024; 24: 9.
5. Henrikson NB, Wagner JK, Hampel H, et al. What guidance does HIPAA offer to providers considering familial risk notification and cascade genetic testing? J Law Biosci 2020; 7: lsaa071.
6. Mendes Á, Paneque M, Sequeiros J. Disclosure of genetic risk to family members: a qualitative study on healthcare professionals’ perceived roles and responsibilities. Eur J Hum Genet 2024; 68: 104931.
7. Australian Law Reform Commission. Essentially Yours: the protection of human genetic information in Australia. Sydney: Commonwealth of Australia, 2003. https://www.alrc.gov.au/publication/essentially‐yours‐the‐protection‐of‐human‐genetic‐information‐in‐australia‐alrc‐report‐96/ (viewed Jan 2025).
8. National Health and Medical Research Council. Use and disclosure of genetic information to a patient's genetic relatives under section 95AA of the Privacy Act 1988 (Cth). Guidelines for health practitioners in the private sector. Canberra: NHMRC, 2014. https://www.nhmrc.gov.au/about‐us/publications/guidelines‐approved‐under‐section‐95aa‐privacy‐act‐1988‐cth (viewed Jan 2025).
9. Otlowski MFA. Disclosing genetic information to at‐risk relatives: new Australian privacy principles, but uniformity still elusive. Med J Aust 2015; 202: 335‐337. https://www.mja.com.au/journal/2015/202/6/disclosing‐genetic‐information‐risk‐relatives‐new‐australian‐privacy‐principles#:~:text=Since%202006%2C%20s%2095AA%20of,health%20or%20safety%20of%20the
10. Tiller J, Bilkey G, Macintosh R, et al. Disclosing genetic information to family members without consent: five Australian case studies. Eur J Med Genet 2020; 63: 104035.
11. Meggiolaro N, Barlow‐Stewart K, Dunlop K, et al. Disclosure to genetic relatives without consent — Australian genetic professionals’ awareness of the health privacy law. BMC Med Ethics 2020; 21: 13.
12. Tiller J, Nowak K, Boughtwood T, Otlowski M. Privacy implications of contacting the at‐risk relatives of patients with medically actionable genetic predisposition, with patient consent: a hypothetical Australian case study. BioTech (Basel) 2023; 12: 45.
13. Stott A, Madelli EO, Boughtwood T, et al. Health professionals contacting patients’ relatives directly about genetic risk (with patient consent): current clinical practice and perspectives. Eur J Hum Genet 2025; 33: 476‐484.
14. Suthers GK, Armstrong J, McCormack J, Trott D. Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 2006; 43: 665‐670.
15. Frey MK, Ahsan MD, Bergeron H, et al. Cascade testing for hereditary cancer syndromes: should we move toward direct relative contact? A systematic review and meta‐analysis. J Clin Oncol 2022; 40: 4129‐4143.
16. Tiller J, Finlay K, Madelli EO, et al. Patients’ perspectives regarding health professionals contacting their relatives about genetic risk directly (with patient consent). Eur J Hum Genet 2025; 33: 485‐495.
17. Tiller JM, Stott A, Finlay K, et al. Direct notification by health professionals of relatives at‐risk of genetic conditions (with patient consent): views of the Australian public. Eur J Hum Genet 2024; 32: 98‐108.
18. Office of the Australian Information Commissioner. Guide to health privacy, version 1.0. Sydney: Commonwealth of Australia, 2025. https://www.oaic.gov.au/privacy/privacy‐guidance‐for‐organisations‐and‐government‐agencies/health‐service‐providers/guide‐to‐health‐privacy (viewed June 2025).

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Australian and New Zealand joint society consensus statement on genetic testing for monogenic diabetes in adults

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The prevalence of and variation in indicators of the quality and safety of long term aged care in Australia, 2019: a cross‐sectional population‐based study

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Trends in adolescent smoking prevalence before and after the emergence of vaping in Australia: an interrupted time series analysis, 1999–2023

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A salute to ten years of Australian Clinical Care Standards: celebrations and challenges

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Symptom burden, quality of life, and diagnostic journey of people with postural orthostatic tachycardia syndrome, Australia, 2021–24: a descriptive patient registry data study

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Implementing voluntary assisted dying in New South Wales correctional settings

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The incidence of and risk factors for hospitalisations and amputations for people with diabetes‐related foot ulcers in Queensland, 2011–19: an observational cohort study

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Clinicians’ discretion to contact patients’ at‐risk relatives about their genetic risk: new guidance from Australia's privacy regulator provides timely clarification

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Bone health perspectives among Indigenous people: a qualitative study

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Am I on the list? Clinician‐reported factors for kidney transplantation non‐waitlisting among Aboriginal and Torres Strait Islander people with kidney failure: a cross‐sectional study

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Australian and New Zealand joint society consensus statement on genetic testing for monogenic diabetes in adults

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The prevalence of and variation in indicators of the quality and safety of long term aged care in Australia, 2019: a cross‐sectional population‐based study

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Trends in adolescent smoking prevalence before and after the emergence of vaping in Australia: an interrupted time series analysis, 1999–2023

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A salute to ten years of Australian Clinical Care Standards: celebrations and challenges

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Symptom burden, quality of life, and diagnostic journey of people with postural orthostatic tachycardia syndrome, Australia, 2021–24: a descriptive patient registry data study

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Implementing voluntary assisted dying in New South Wales correctional settings

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The incidence of and risk factors for hospitalisations and amputations for people with diabetes‐related foot ulcers in Queensland, 2011–19: an observational cohort study

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Clinicians’ discretion to contact patients’ at‐risk relatives about their genetic risk: new guidance from Australia's privacy regulator provides timely clarification

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Bone health perspectives among Indigenous people: a qualitative study

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Am I on the list? Clinician‐reported factors for kidney transplantation non‐waitlisting among Aboriginal and Torres Strait Islander people with kidney failure: a cross‐sectional study

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