Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries.
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BACKGROUND: Around 90% of children with cancer live in low- and middle-income countries (LMICs), with the majority dying of their disease. Despite the need for quality end-of-life (EoL) care in LMICs, access and integration remain limited. Quality indicators (QIs) can assess and provide standards for high-quality care. The aim of this study was to develop QIs for EoL care for children diagnosed with cancer in LMICs. METHODS: The QIs were identified and prioritized through a multi-phase process: (1) literature review identified potential QIs from existing guidelines, standards, and published studies; (2) modified Delphi approach engaged global experts to assess the importance and feasibility of QIs; and (3) prioritization conducted using a Discrete Choice Experiment (DCE) with experts and dot voting prioritization exercise with bereaved family members. RESULTS: From the literature review, 73 potential QIs were identified. Fifty-six global experts from 27 countries participated in the modified Delphi. Sixty-four indicators across seven domains were deemed important with 25 identified as both important and feasible. Forty-one global experts from 23 countries participated in the DCE prioritization and 12 bereaved family members from nine countries participated in the dot voting prioritization. While experts and family members prioritized some indicators similarly (i.e., symptom management), family members placed higher priority on QIs addressing communication and anticipatory guidance. CONCLUSION: This study describes a robust, context-specific process which identified QIs for pediatric EoL care in LMICs. Future efforts will pilot and refine the QIs to demonstrate feasibility, sustainability, and impact on care quality. PRECIS: This study assessed potential quality indicators (QIs) for pediatric end-of-life (EoL) care in low- and middle-income countries (LMICs) through a multi-phase process involving global experts and bereaved families. The findings provide a set of potential QIs to evaluate and improve EoL care for children with cancer in LMICs.