Development and Validation of the QUALI-PALLI-FAM Questionnaire for Assessing Relatives' Perception of Quality of Inpatient Palliative Care: A Prospective Cross-Sectional Survey

Autor: Frédéric Guirimand, Carole Bouleuc, Isabelle Vedel, Laure Copel, Louise Geoffroy, Philippe Aegerter, Marine Sahut d’Izarn, Patricia Martel-Samb, Xavier Grenet, Karima Nfissi, Anne Abel, Laurence Gineston, Yael Tibi-Lévy, Sylvie Rostaing, Jean-François Richard, Bernard Devalois, Kate Vincent, Hélène Godard, Stéphane Picard, Christian Guy-Coichard, Véronique Ghadi
Přispěvatelé: Université de Versailles Saint-Quentin-en-Yvelines - UFR Sciences de la santé Simone Veil (UVSQ Santé), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ), Institut Curie [Paris], Hôpital Ambroise Paré [AP-HP], CHU Saint-Antoine [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Groupe Hospitalier Diaconesses Croix Saint-Simon, CY Cergy Paris Université (CY), Haute Autorité de Santé [Saint-Denis La Plaine] (HAS), Centre de recherche en épidémiologie et santé des populations (CESP), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay, CERMES3 - Centre de recherche Médecine, sciences, santé, santé mentale, société (CERMES3 - UMR 8211 / U988 / UM 7), École des hautes études en sciences sociales (EHESS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université Paris Cité (UPC), Ministère des Affaires Sociales et de la Santé: 2009-04 Assistance publique-Hôpitaux de Paris: NI10052 12059, NCT02814682, Funding: This study was supported by a grant from the French Ministry of Health ( PreQHos 2009-04 ) and sponsored by the Assistance Publique-Hôpitaux de Paris ( NI10052 )., The investigators thank the members of the QUALI-PALLI Group: Anne Abel, Laure Copel, Louise Geoffroy, Laurence Gineston, H?l?ne Godard, Xavier Grenet, Karima Nfissi, Jean-Fran?ois Richard, Sylvie Rostaing, Yael Tibi-L?vy, Isabelle Vedel, Kate Vincent, and the Clinical Research Unit team that worked on QUALI-PALLI (Layde Meaude, Sylvie Laot-Cabon, Sarah Gaston-Dreyfus, Audrey Angelard, Yasmine Saidji, Karima Mesbahi, and Wen Teng). Funding: This study was supported by a grant from the French Ministry of Health (PreQHos 2009-04) and sponsored by the Assistance Publique-H?pitaux de Paris (NI10052). Ethical approval: This study was approved by a regional ethics committee (#12059, Comit? de Protection des Personnes CPP ?le de France XI, Saint Germain-en-Laye, France) and was registered on clinicaltrials.gov (NCT02814682). All participants were duly informed, and oral consent was obtained before the research. According to French health regulations, no written informed consent was required, as this was an observational study using registered data. Data sharing: The data sets generated and/or analyzed during the present study are not publicly available to protect confidentiality, but aggregated data are available from the corresponding author on reasonable request. The authors declare no conflicts of interest., Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)
Rok vydání: 2021
Předmět:
Zdroj: Journal of Pain and Symptom Management
Journal of Pain and Symptom Management, Elsevier, 2021, 61 (5), pp.991-1001.e3. ⟨10.1016/j.jpainsymman.2020.09.025⟩
ISSN: 0885-3924
Popis: International audience; Context: Relatives of patients receiving palliative care are at risk for psychological and physical distress, and their perception of quality of care can influence patients' quality of life. Objectives: The purpose of this study was to develop and validate the QUALI-PALLI-FAM questionnaire (QUAlity of PALLIative car from FAMilies' perspective) to measure families' perception of and satisfaction with palliative care. Methods: An exploratory factor analysis was conducted, and we evaluated the questionnaire's internal consistency using Cronbach's alpha, its stability across various strata, and the correlation between the QUALI-PALLI-FAM (factors, total score, and global satisfaction) and the total score of the FAMCARE (FAMily satisfaction with CARE) questionnaire. Results: This multicentric prospective cross-sectional survey was conducted in seven French hospitals, namely, three palliative care units and four standard medical units with a mobile palliative care team. The questionnaire was completed by 170 relatives of patients (more than 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organization of care and availability of caregivers, medical information provision, and confidence and involvement of relatives. Internal consistency was good for all subscales (Cronbach's α = 0.74–0.86). Our questionnaire was stable across various strata: age and gender (patients and relatives), Palliative Performance Scale scores, and care settings. The QUALI-PALLI-FAM total score was correlated with the total FAMCARE score. Conclusion: The QUALI-PALLI-FAM appears to be a valid, reliable, and well-accepted tool to explore relatives' perception of quality of inpatient palliative care and complements the QUALI-PALLI-PAT questionnaire. Further testing is required in various settings and countries.
Databáze: OpenAIRE
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