Projects per year
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables.
STUDY DESIGN: Modified RAND/University of California at Los Angeles (RAND/UCLA) appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n=19), neurology (n=21), and genetic/congenital (n=17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with Interpercentile Range Adjusted for Symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice.
RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurological conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurological conditions, and 23 for genetic/congenital conditions.
CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.
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SRP4: Strategic Research Programme: End-of-life in cancer and non-cancer patients: public health, health services and clinical research. Addressing present and future challenges in palliative care.
Deliens, L., Cohen, J., Van den Block, L., Pardon, K., Deliens, L., Cohen, J., Van den Block, L., Chambaere, K., Bilsen, J., Deschepper, R., Rietjens, J. A. C., Sterckx, S., Theuns, P., Vander Stichele, R. & Mortier, F.
1/11/12 → 31/10/22