Development and validation of the QUALI-PALLI-FAM questionnaire for assessing relatives' perception of quality of inpatient palliative care: A prospective cross-sectional survey

J Pain Symptom Manage. 2020 Sep 23;S0885-3924(20)30758-2. doi: 10.1016/j.jpainsymman.2020.09.025. Online ahead of print.

Abstract

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 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 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 (over 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organisation 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.

Keywords: family; outcome measure; palliative care; quality of health care; questionnaire; validation study.