An umbrella review of patient- and carer-reported measures for assessing adult end-of-life care quality outcomes
Year: 2025
Type: article
Study design: Systematic Review
Abstract: Background: Assessing end-of-life care quality is important yet selecting measures remains challenging. This umbrella review synthesizes evidence on measures for EOL outcomes-quality of life (QOL), care experience, quality of dying (QOD), and suffering. Methods: We searched five databases for systematic reviews published, 01 January 2009-29 July 2025. Included reviews assessed QOL, care experience, QOD and suffering measures for terminally ill adults and caregivers. We used AMSTAR2 to assess review quality and reported psychometrics per COSMIN. This study is registered on PROSPERO (CRD42024610359). Findings: From 30 reviews, we extracted 161 unique measures: 83 for QOL, 49 for care experience, 15 for QOD, and 14 for suffering. No single measure showed sufficient psychometric robustness. Among generic measures, those with stronger evidence included Palliative Care Outcome Scale (QOL); Family Assessment of Treatment at End-of-life, Care of the Dying Evaluation, and Quality of End-of-Life Care (care experience); Quality of Dying and Death Questionnaire (QOD); and Pictorial Representation of Illness and Self-Measure, and Patient Dignity Inventory (suffering). Interpretation: In this review, we recommended measures with stronger evidence and developed a checklist to guide selection based on domain relevance, disease group, population fit, and psychometrics. Future research should pursue rigorous validation and standardized reporting to strengthen assessment of end-of-life care. Funding: None.
Source: EClinicalMedicine
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $5,780
Funder: World Health Organization
OpenAlex ID: W4414889649