Experienced quality of care and emotional functioning of patients with advanced cancer and their relatives: Results of a multicenter observational cohort study (eQuiPe)

3 Background: Previous studies on experienced quality of care and quality of life have not addressed the reciprocal relation between patients and their relatives. For the first time we were able to include almost 700 couples (patient – relative) in a palliative oncological care context. This study aims to assess the experienced quality of care and emotional functioning (EF) of patients with advanced cancer and their relatives, including their reciprocal relation by using a dyadic approach. Methods: A prospective multicentre observational study among patients with advanced cancer and their relatives, recruited from 40 hospitals in the Netherlands or self-enrolled between November 2017 and January 2020 (eQuiPe study). Patients with metastatic cancer and their relatives were eligible to participate. Respondents completed a questionnaire and clinical data of the patient were obtained by linking the information to the Netherlands Cancer Registry (NCR). Logistic regression analyses were performed on baseline data of 1,103 patients and 831 relatives to assess the association between experienced quality of care and EF of patients and relatives separately and across dyads. Results: In total, 1,103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower levels of quality of life, including EF, and more symptoms compared to the normative population ( p<.001). Relatives reported even clinically relevantly lower EF compared to patients (69 vs. 78, p<.001) and were less satisfied with care (59 vs. 74; p<.001). Being more satisfied with care in general ( p<.05) and clarity about who their central health care professional ( p<.05) were positively associated with high EF in patients. For relatives, perceived continuity of care ( p<.01) and continuity of information for the patient ( p<.05) were positively associated with high EF. Dyadic analyses showed that EF of patients ( p<.001) and relatives ( p<.001) was positively associated with EF of the other person and perceived continuity of care by relatives was positively associated with high EF in patients ( p<.01). Conclusions: Experienced integral organisation and satisfaction with care in patients and relatives are related to their EF. The additional reciprocal relation between patients’ and their relatives’ EF and the experienced continuity of care suggests the opportunity for a family‐centered approach to optimize advanced cancer care.