Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries.
15 affiliations
- 1Department of Global Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
- 2Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
- 3International Children's Palliative Care Network, Cape Town, South Africa.
- 4Pediatric Palliative Care Research, Massachusetts General Hospital, Boston, Massachusetts, USA.
- 5Dr. Robert Reid Cabral Children's Hospital, Santo Domingo, Dominican Republic.
- 6Division 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.
- 7Yerevan State Medical University After Mkhitar Heratsi, Yerevan, Armenia.
- 8African Palliative Care Association, Kampala, Uganda.
- 9Department of Palliative Medicine and Supportive Care, Kasturba Medical College, Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
- 10Behavioural Sciences Unit, School of Clinical Medicine, UNSW Medicine & Health, Discipline of Paediatrics and Child Health, UNSW Sydney, Sydney, New South Wales, Australia.
- 11Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
- 12Sydney Youth Cancer Centre, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Randwick, New South Wales, Australia.
- 13Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
- 14National Institutes of Health, Bethesda, Maryland, USA.
- 15Division of Quality of Life and Pediatric Palliative Care, Stanford University, Palo Alto, California, USA.
Abstract
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.
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BibTeX
@article{mcneil2026quality,
title = {{Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries.}},
author = {Michael J McNeil and Ximena Garcia Quintero and Marta Salek and Asya Agulnik and Julia Downing and Veronica Dussel and Paola Friedrich and Wendy Gomez Garcia and Emily E Johnston and Narine Movsisyan and Eve Namisango and Krithika Rao and Ursula M Sansom-Daly and Kimberley Widger and Lori Wiener and Carlos Rodriguez-Galindo and Justin N Baker},
journal = {Cancer medicine},
year = {2026},
month = oct,
doi = {10.1002/cam4.72443},
url = {https://europepmc.org/article/MED/42958883},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Quality Indicators in End-of-Life Care for Children With Cancer in Low- and Middle-Income Countries.
AU - Michael J McNeil
AU - Ximena Garcia Quintero
AU - Marta Salek
AU - Asya Agulnik
AU - Julia Downing
AU - Veronica Dussel
AU - Paola Friedrich
AU - Wendy Gomez Garcia
AU - Emily E Johnston
AU - Narine Movsisyan
AU - Eve Namisango
AU - Krithika Rao
AU - Ursula M Sansom-Daly
AU - Kimberley Widger
AU - Lori Wiener
AU - Carlos Rodriguez-Galindo
AU - Justin N Baker
PY - 2026
DA - 2026/10/30
JO - Cancer medicine
DO - 10.1002/cam4.72443
UR - https://europepmc.org/article/MED/42958883
AB - 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.
SN - 2045-7634
ER -