Author: Veerle Piette
Date: 22-11-2022
Supervisors:
Prof. dr. Joachim Cohen (Vrije Universiteit Brussel, Promotor)
Prof. dr. Kim Beernaert (Vrije Universiteit Brussel, Promotor)
Prof. dr. Luc Deliens (Ghent University, Promotor)
SUMMARY OF THE DISSERTATION
Despite advancing treatment, up to one fourth of first-world deaths in children still occurs due to serious illness, such as cancer, neurological conditions, and genetic and congenital conditions. This group of children can suffer from burdensome symptoms at the end of life, such as pain and anxiety. A broad evaluation of the quality of end-of-life care for children with serious illness is therefore advised, and quality indicators tailored specifically to the child at the end of life have been requested nationally as well as internationally for this purpose. This dissertation developed such pediatric-specific indicators for potentially appropriate and potentially inappropriate end-of-life care, and measured them within Belgian population-level administrative healthcare data. Quality indicators were developed using the RAND/UCLA methodology, and measured using population-level decedent cohort designs. Three sets of pediatric-specific quality indicators were finalized, for the disease groups of cancer, neurological conditions, and genetic/congenital conditions. Potential comfort medication and treatment, such as specialized medication and palliative care, were reimbursed to upwards one third of children. Potentially aggressive treatment, such as surgeries, was reimbursed for nearly no children for all illness categories, but blood drawings and ICU admissions for up to half of the children at the end of life. Continuous reimbursed care provision by specialist physicians was present for circa three quarters of children, yet multidisciplinary care in less than one fifth of children. Administrative measures were provided to less than one fifth of children. Further research into pain and symptom interventions alongside patient input is recommended, as well as the incorporation of learning and improvement strategies using indicators as flexible benchmarks.
