Population-level analysis of appropriateness of end-of-life care for children with neurological conditions

Population-level analysis of appropriateness of end-of-life care for children with neurological conditions

Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J

Journal of Pediatrics

2022

Cohort; Indicators; Quality of Care

OBJECTIVE: To measure the appropriateness of end-of-life care for children who died with neurological conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurological conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed analysis of variance for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurological conditions died in Belgium. For potentially appropriate care, in the last 30 days 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days 45% had blood drawn, and 27% were admitted to ICU. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurological conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and phlebotomy.

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