@article{01H5S0W7R47NME2GQV4C1MTQQW,
  abstract     = {{This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month.Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging.}},
  author       = {{Piette, Veerle and Deliens, Luc and Debulpaep, Sara and Cohen, Joachim and Beernaert, Kim}},
  issn         = {{0340-6199}},
  journal      = {{EUROPEAN JOURNAL OF PEDIATRICS}},
  keywords     = {{Pediatrics, Perinatology and Child Health,Pediatrics,End of life,Palliative care,Genetic conditions,Congenital conditions,Quality indicators}},
  language     = {{eng}},
  pages        = {{3857--3869}},
  publisher    = {{Springer Science and Business Media LLC}},
  title        = {{Appropriateness of end-of-life care for children with genetic and congenital conditions : a cohort study using routinely collected linked data}},
  url          = {{http://doi.org/10.1007/s00431-023-05030-z}},
  volume       = {{182}},
  year         = {{2023}},
}

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