Publication
Developing quality indicators for potentially (IN)appropriate end-of-life care in children with cancer, neurological conditions or genetic and congenital conditions: A RAND/UCLA appropriateness study
Piette V, Deliens L, Van Der Werff ten Bosch J, Beernaert K, Cohen J · Palliative Medicine · 2021
Background: Monitoring tools for the appropriateness of end-of-life care in children are lacking. No validated population-level quality indicators exist for children with life-limiting conditions. Aim(s): To develop and face-validate population-level indicators of potentially appropriate and inappropriate end-of-life care for children with cancer, neurological conditions and genetic/congenital conditions, measurable with administrative data. Method(s): Modified RAND/UCLA appropriateness method. We first identified potential indicators through systematic literature review, scoping review, and expert interviews. Then, 35 unique experts scored potential indicator sets for suitability as indicator via an electronic survey. Indicators without consensus were discussed in 3 group discussions to which 32 experts (26 of 35) participated in November-December 2020. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, family physicians, social workers from various settings. Result(s): Systematic literature review yielded 6 potential indicators for cancer, 1 for neurological conditions, and 4 for genetic/congenital conditions with evidence about an impact on quality of life. After the scoping review and expert interviews, we expanded this to a list of respectively 36, 32, and 33 eligible potential indicators. In the expert scoring round respectively 14, 18 and 17 indicators were immediately selected and 17, 11, 16 were discussed. The final sets consist of 21 indicators for children with cancer, 24 for neurological conditions and 23 for genetic/congenital conditions. Discussion(s): We developed and face-validated 3 sets of quality indicators, applicable to population databases that provide opportunities to generate more evidence about appropriateness of end-of-life care in children. The differences between our indicators and those developed for adult populations stress the specificity of end-of-life care in children. Funded by FWO.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.