ArticleHealthcare (Basel, Switzerland)2026
Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.
Article in Healthcare (Basel, Switzerland), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundEvaluating end-of-life care quality remains a central challenge in health systems facing population ageing and complex chronic disease trajectories. Given the clinical challenges of direct data collection at the end-of-life, bereaved family members act as critical proxies, providing data on the care delivered in the final months of life. However, most available instruments lack the contextual sensitivity required for national-level epidemiological surveillance.
objectivesThis study aims to develop and establish the face validity of a national questionnaire to evaluate the healthcare trajectory of adults with advanced chronic disease from the proxy perspective.
methodsA four-stage developmental protocol was implemented: (1) conceptual framework definition; (2) item generation through a review of national regulations, a scoping review of seven international instruments, and a focus group with clinical experts; (3) item reduction and refinement through expert panel review; and (4) face validity and feasibility testing through cognitive interviews and a pilot study.
resultsThe consensus process and pilot testing resulted in a final instrument comprising 84 items, structured into 7 sections and 17 thematic clusters. The questionnaire covers core care trajectories, the last 48 h of life, and bereavement support, while integrating specific national settings like integrated continuous care, alongside items on spiritual care and communication. The pilot study yielded a mean completion time of 14.6 min, while cognitive interview and pilot testing supported participant acceptability and feasibility for both telephone-assisted and self-administration modes.
conclusionsThis questionnaire provides a face-validated, evidence-informed tool for post-death proxy reporting at the end-of-life. By aligning international quality indicators with country-specific healthcare structures, the instrument is ready for further testing of its reliability and validity and may support future comparative research, clinical auditing and health policy development.
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