Each year about 6 in every 100.000 children (aged 1-17) die of a life-threatening condition. Partly
as a result of the specific value appointed to a child’ life, treatment for these children is often
focused on cure and life prolongation until the last stages of life, even when no longer warranted
or beneficial, having an important influence on the child’ quality of life. Population-based
research on paediatric end-of-life care is scant and validated evaluation methods are lacking.
Consequently, there is an urgent need for evaluation of paediatric care near the end of life.
This project will develop and validate three sets of quality indicators (QIs) for care at the end of life
for children with cancer, neurological disorders and other life-threatening conditions. QIs, i.e.
measurable parameters of specific aspects of care, can be a helpful tool in achieving improvement
and transparancy at an aggregated level. The QIs will be selected through literature and expert
consensus and will be measurable using administrative databases. With these QIs, we will assess
paediatric end-of-life care in the Belgian health care system 2008-2015 using data from linked
administrative databases (incl. reimbursed treatments and medication use). Quality issues will be
detected and can serve as a basis to develop interventions to improve paediatric end-of-life care.
The QI sets will be used for comparing hospital regions in Belgium, and eventually for international