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

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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12904-019-0403-z) contains supplementary material, which is available to authorized users.