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Commentary on: Lyon, M. E., Fraser, J. L., Thompkins, J. D., et al (2024). Advance Care Planning for Children With Rare Diseases: A Pilot RCT. Pediatrics, 153(6), e2023064557. https://doi.org/10.1542/peds.2023-064557.
Implications for research and practice Having access to advance care planning, despite social and financial constraints is imperative. It is evident that in the population included in this study, advance care planning was invaluable for those below the 2021 financial poverty line. Further research is required to determine if the current medical model in the USA is meeting the requirements of caregivers and children with rare diseases.
Rare diseases in babies, children and young people (children) are often life-shortening, and children can require constant caregiving. Bösch et al
To determine the proportion of Aboriginal and/or Torres Strait Islander Peoples with diabetes who were monitored according to recommended national guidelines and had their clinical parameters within recommended targets. We also examined trends over time (2013–2022) and compared urban and rural areas.
A repeated cross-sectional study using data from a national general practice database (MedicineInsight, 2013–2022).
De-identified electronic health records (EHR) of people attending 427 mainstream general practices across Australia.
This study included all Aboriginal and/or Torres Strait Islander adults (18+ years) diagnosed with diabetes mellitus who were regular patients (attended at least once a year in three consecutive years) within the MedicineInsight database.
Outcomes measured were (i) monitoring of blood glucose, lipids, blood pressure (BP), renal function and Body Mass Index (BMI)/waist circumference (WC) and (ii) achieving recommended targets: glycosylated haemoglobin (HbA1c) ≤7.0%, fasting glucose 4–7 mmol/L, random glucose 5–10 mmol/L, total cholesterol ≤4.0 mmol/L, low-density lipoprotein 60 mL/min/1.73 m2, urine albumin-creatinine ratio (uACR) 2, WC
Between 70% and 90% of individuals were monitored for the clinical parameters above, except for BMI/WC (55%–75%). Trends in monitoring over time were similar across remoteness areas, increasing slightly in 2013–2014 and declining from 2019. Among those monitored, 53%–86% achieved targets for blood glucose, lipids and renal function; 32%–42% for BP; and
The risk of diabetes complications among Aboriginal and/or Torres Strait Islander Peoples could be reduced by improving management of blood pressure and overweight/obesity in all areas, and blood glucose and lipids in rural areas.
FreshRSS 