Development and validation of a French questionnaire concerning patients’ perspectives of the quality of palliative care: the QUALI-PALLI-Patient

BMC Palliative Care

Bernard Devalois¹  QUALI-PALLI group and Philippe Aegerter²  Véronique Ghadi³  Frédéric Guirimand⁴  Patricia Martel-Samb⁵  Laure Copel⁶  Stéphane Picard⁶  Christian Guy-Coichard⁷  Anne Abel⁸ 

[1] Centre de Recherche Interprofessionnel Bientraitance et Fin de Vie, Service de Médecine Palliative, Hôpital de Pontoise;GIRCI-IDF, Cellule Méthodologie;Haute Autorité de Santé;Pôle recherche SPES “Soins Palliatifs en Société”, Maison Médicale Jeanne Garnier;Unité de Recherche Clinique URC HU PIFO, AP-HP, Hôpital Ambroise Paré;Unité de Soins Palliatifs, Groupe Hospitalier Diaconesses Croix Saint-Simon;Équipe Mobile de Soins Palliatifs, AH-HP, Hôpital Saint Antoine;Équipe Mobile de Soins Palliatifs, AP-HP, Hôpital Ambroise Paré;

关键词: Palliative care;    Questionnaire;    Quality of care;    Satisfaction;    Validation;    Outcome assessments;   

DOI  :  10.1186/s12904-019-0403-z

来源: DOAJ

【 摘 要 】

Abstract Background Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view. Methods Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire. Results A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers’ listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach’s α 0.5–0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40–50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms’ severity and impact on life. Each subscale, except “possibility to refuse”, correlated with general satisfaction. Conclusions Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings. Trial registration clinicaltrials.gov NCT02814682, registration date 28.6.2016.

【 授权许可】

Unknown