Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.
- 1School of Medicine and Biomedical Sciences of Abel Salazar Biomedical Institute, R. Jorge de Viterbo Ferreira 228, 4050-313 Porto, Portugal.
- 2Community Care Unit of Lousada, Rua de Santo Tirso 70, 4620-848 Lousada, Portugal.
- 3RISE-Health, Faculty of Medicine, University of Porto, Alameda Prof. Hernâni Monteiro, 4200-319 Porto, Portugal.
Abstract
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.
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BibTeX
@article{pereira2026measuring,
title = {{Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.}},
author = {Alexandra Pereira and Amélia Ferreira and Sara Pinto},
journal = {Healthcare (Basel, Switzerland)},
year = {2026},
month = sep,
doi = {10.3390/healthcare14193178},
url = {https://europepmc.org/article/MED/42881617},
note = {CC BY},
}
RIS
TY - JOUR
TI - Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.
AU - Alexandra Pereira
AU - Amélia Ferreira
AU - Sara Pinto
PY - 2026
DA - 2026/09/24
JO - Healthcare (Basel, Switzerland)
DO - 10.3390/healthcare14193178
UR - https://europepmc.org/article/MED/42881617
AB - 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.
SN - 2227-9032
ER -