Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.

BACKGROUND

Evaluating 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.

OBJECTIVES

This 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.

METHODS

A 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.

RESULTS

The 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.

CONCLUSIONS

This 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.