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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
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