{
  "abstract": "Background\n\nEvaluating 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\n\nThis 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\n\nA 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\n\nThe 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\n\nThis 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.",
  "abstract_shown": true,
  "affiliations": [
    "School of Medicine and Biomedical Sciences of Abel Salazar Biomedical Institute, R. Jorge de Viterbo Ferreira 228, 4050-313 Porto, Portugal.",
    "Community Care Unit of Lousada, Rua de Santo Tirso 70, 4620-848 Lousada, Portugal.",
    "RISE-Health, Faculty of Medicine, University of Porto, Alameda Prof. Hernâni Monteiro, 4200-319 Porto, Portugal."
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 3,
  "authors": [
    {
      "affs": [
        0,
        1
      ],
      "name": "Alexandra Pereira",
      "orcid": "0000-0002-5021-0503"
    },
    {
      "affs": [
        0,
        1
      ],
      "name": "Amélia Ferreira",
      "orcid": "0000-0001-9360-6754"
    },
    {
      "affs": [
        2
      ],
      "name": "Sara Pinto",
      "orcid": "0000-0001-9327-5270"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/84phr17dcsjb6.bib",
  "cited_by": 0,
  "doi": "10.3390/healthcare14193178",
  "fulltext_url": "https://europepmc.org/articles/PMC13665062",
  "id": "84phr17dcsjb6",
  "issns": [
    "2227-9032"
  ],
  "landing_url": "https://europepmc.org/article/MED/42881617",
  "language": "eng",
  "licence": "CC-BY",
  "licence_label": "CC BY",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "openalex",
      "2739|Palliative Care and End-of-Life Issues"
    ]
  ],
  "openalex": "W7214215178",
  "pdf_url": "https://europepmc.org/articles/PMC13665062?pdf=render",
  "pmcid": "PMC13665062",
  "pmid": "42881617",
  "published": "2026-09-24",
  "publisher": null,
  "ris": "https://research.draconitic.com/paper/84phr17dcsjb6.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:19:16Z",
      "native_id": "MED:42881617",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42881617"
    }
  ],
  "subjects": [
    {
      "field": "medicine",
      "origin": "openalex:2739|Palliative Care and End-of-Life Issues",
      "subfield": "epidemiology-public-health"
    }
  ],
  "title": "Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.",
  "title_text": "Measuring End-of-Life Care: Development of a National Questionnaire for Bereaved Family Members.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:19:16Z",
  "url": "https://research.draconitic.com/paper/84phr17dcsjb6",
  "venue": "Healthcare (Basel, Switzerland)",
  "versions": []
}