Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries
APCA Executive Director Dr Eve Namisango is a co-author of a new study that sets out quality indicators for end-of-life care for children with cancer in low- and middle-income countries. Led by St. Jude Global, the PrOTECT study (Pediatric Oncology Tool for End-of-life Care Treatment) brought together experts and bereaved families from around the world to define what good care looks like in the settings where most childhood cancer deaths happen.
Why it matters
Around nine in ten children with cancer live in low- and middle-income countries, and most of them die of their disease. Many reach the end of life with a heavy symptom burden, yet access to children's palliative care remains limited. More than 200 end-of-life quality indicators exist for adults, but very few for children, and those were developed in high-income settings. PrOTECT gives hospitals in resource-limited settings a practical, context-specific way to measure and improve the care they give to children at the end of life.
Summary of the study
How the indicators were developed
The team reviewed published guidelines, standards and studies and identified 73 potential indicators. Fifty-six experts from 27 countries then rated them for importance and feasibility through a modified Delphi process. Finally, 41 experts from 23 countries ranked the indicators in a discrete choice experiment, and 12 bereaved family members from nine countries set their own priorities through a dot-voting exercise. Experts from the WHO Africa region, including Kenya, Nigeria and South Africa, took part at each stage.
What they found
Sixty-four indicators were rated important, across seven domains: the interdisciplinary team; physical care; psychosocial care; spiritual, religious and existential care; communication; care of the patient near the end of life; and ethical and legal aspects of care. Of these, 25 were judged both important and feasible to measure. Experts and families agreed on the importance of symptom management, while families gave more weight to good communication and to preparing them for what to expect.
What comes next
The authors will pilot and refine the indicators in hospitals to test their feasibility, sustainability and impact on the quality of care.
Authors
Funding: American Lebanese Syrian Associated Charities (ALSAC) and the Conquer Cancer Foundation Global Oncology Young Investigator Award.
Summary written by APCA. The article is published open access in Cancer Medicine under a Creative Commons Attribution-NonCommercial-NoDerivs licence.
