{ "abstract": "Background\n\nAround 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\n\nThe 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\n\nFrom 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\n\nThis 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\n\nThis 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.", "abstract_shown": true, "affiliations": [ "Department of Global Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.", "Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.", "International Children's Palliative Care Network, Cape Town, South Africa.", "Pediatric Palliative Care Research, Massachusetts General Hospital, Boston, Massachusetts, USA.", "Dr. Robert Reid Cabral Children's Hospital, Santo Domingo, Dominican Republic.", "Division of Pediatric Hematology-Oncology, Department of Pediatrics, University of Alabama at Birmingham School of Medicine, Institute for Cancer Outcomes and Survivorship, UAB School of Medicine, Birmingham, Alabama, USA.", "Yerevan State Medical University After Mkhitar Heratsi, Yerevan, Armenia.", "African Palliative Care Association, Kampala, Uganda.", "Department of Palliative Medicine and Supportive Care, Kasturba Medical College, Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.", "Behavioural Sciences Unit, School of Clinical Medicine, UNSW Medicine & Health, Discipline of Paediatrics and Child Health, UNSW Sydney, Sydney, New South Wales, Australia.", "Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.", "Sydney Youth Cancer Centre, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Randwick, New South Wales, Australia.", "Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.", "National Institutes of Health, Bethesda, Maryland, USA.", "Division of Quality of Life and Pediatric Palliative Care, Stanford University, Palo Alto, California, USA." ], "article_type": "research article", "arxiv": null, "author_total": 17, "authors": [ { "affs": [ 0, 1 ], "name": "Michael J McNeil", "orcid": "0000-0001-8817-1995" }, { "affs": [ 0 ], "name": "Ximena Garcia Quintero", "orcid": "0000-0003-1416-544X" }, { "affs": [ 0, 1 ], "name": "Marta Salek", "orcid": "0000-0002-3421-5945" }, { "affs": [ 0 ], "name": "Asya Agulnik", "orcid": "0000-0001-8932-8181" }, { "affs": [ 2 ], "name": "Julia Downing", "orcid": "0000-0002-3450-785X" }, { "affs": [ 3 ], "name": "Veronica Dussel", "orcid": "0000-0002-9259-6133" }, { "affs": [ 0 ], "name": "Paola Friedrich", "orcid": "0000-0002-5265-3113" }, { "affs": [ 4 ], "name": "Wendy Gomez Garcia" }, { "affs": [ 5 ], "name": "Emily E Johnston", "orcid": "0000-0001-9126-2169" }, { "affs": [ 6 ], "name": "Narine Movsisyan", "orcid": "0000-0002-0258-9002" }, { "affs": [ 7 ], "name": "Eve Namisango", "orcid": "0000-0001-5032-4714" }, { "affs": [ 8 ], "name": "Krithika Rao", "orcid": "0000-0002-7679-4850" }, { "affs": [ 9, 10, 11 ], "name": "Ursula M Sansom-Daly", "orcid": "0000-0003-4200-8900" }, { "affs": [ 12 ], "name": "Kimberley Widger", "orcid": "0000-0001-8132-061X" }, { "affs": [ 13 ], "name": "Lori Wiener", "orcid": "0000-0002-9573-8870" }, { "affs": [ 0 ], "name": "Carlos Rodriguez-Galindo", "orcid": "0000-0002-2360-8946" }, { "affs": [ 14 ], "name": "Justin N Baker", "orcid": "0000-0002-6584-6483" } ], "bibtex": "https://research.draconitic.com/paper/36b1yp21krhr2.bib", "cited_by": 0, "doi": "10.1002/cam4.72443", "fulltext_url": "https://europepmc.org/articles/PMC13720528", "id": "36b1yp21krhr2", "issns": [ "2045-7634" ], "landing_url": "https://europepmc.org/article/MED/42958883", "language": "eng", "licence": "CC-BY-NC-ND", "licence_label": "CC BY-NC-ND", "licence_source": "article", "licence_url": "https://creativecommons.org/licenses/by-nc-nd/4.0/", "metadata_licence": null, "native_subjects": [ [ "heading", "Research Article" ], [ "openalex", "2739|Palliative and Oncologic Care" ] ], "openalex": "W7224753476", "pdf_url": "https://europepmc.org/articles/PMC13720528?pdf=render", "pmcid": "PMC13720528", "pmid": "42958883", "published": "2026-10-30", "publisher": "Wiley", "ris": "https://research.draconitic.com/paper/36b1yp21krhr2.ris", "sources": [ { "first_seen": "2026-11-01T00:20:36Z", "native_id": "MED:42958883", "source": "europepmc", "url": "https://europepmc.org/article/MED/42958883" }, { "first_seen": "2026-11-03T12:21:23Z", "native_id": "PMC13720528", "source": "pmc", "url": "https://doi.org/10.1002/cam4.72443" } ], "subjects": [ { "field": "medicine", "origin": "openalex:2739|Palliative and Oncologic Care", "subfield": "epidemiology-public-health" } ], "title": "Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries.", "title_text": "Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries.", "type": "peer-reviewed", "updated_at": "2026-11-03T12:21:23Z", "url": "https://research.draconitic.com/paper/36b1yp21krhr2", "venue": "Cancer medicine", "versions": [] }