Determinants of patients' experiences with patientcenteredness in endometriosis care

Abstract

Study question: Which demographic and medical characteristics of woman are associated with their assessment of patient-centeredness in endometriosis care? Summary answer: A lower educational level, dyspareunia and membership of a patient-organization were found to be independently associated with patient-centeredness as experienced by women in endometriosis care. What is known already: Patient-centered care (PCC) is one of the six dimensions of quality of care. Indeed, focusing on improving patients' experiences with patient-centered care is necessary to improve quality of care. The patientcenteredness of endometriosis care can be measured with the validated and reliable Endocare Questionnaire (ECQ), generating patient-centeredness scores (PCS). Those PCS can subsequently facilitate the development of care improvement projects. A previous study found that a lower educational level was correlated with a higher overall PCS in patients from solely two tertiary clinics. Study design, size, duration: A cross-sectional study was conducted in surgically diagnosed patients with endometriosis. A total of 401 patients were eligible and received the ECQ in 2015 and 2016 and, if needed, two reminders were sent. Participants/materials, setting, methods: All patients were selected from a Dutch tertiary and a Dutch secondary clinic. All 401 patients underwent endometriosis surgery between 2013 and 2014. Univariate and multivariate regression analyses with a forward elimination procedure were conducted to identify variables associated with PCC. Main results and the role of chance: The overall response rate was 56.9%. In total, data from 209 patients was eligible for analysis. Univariate analyses showed 'educational level', 'membership of a patient organization', 'child wish in the future', 'subfertility', 'dysmenorrhea', 'dyspareunia', 'chronic pelvic pain' and 'the degree of which disease is suppressed' as potential determinants of PCC (all p < 0.2). 'The degree of which disease is suppressed' was excluded from multivariate analysis due to the low response rate (n = 90). After adjustment for clinic, multivariate analysis showed a lower educational level (B=0.551, p = 0.027), presence of dyspareunia (B=0.790, p = 0.001) and a being member of a patient organization (B=1,670, p < 0.001) to be independently associated with higher overall PCS (R2=0.21). Limitations, reasons for caution: Since endometriosis is a chronic disease and care is very dynamic, one cross-sectional study will not comprehend the possible change in patients' experiences to its fullest. A larger sample size would be valuable for identifying determinants of the overall PCS. Wider implications of the findings: The afore-mentioned determinants of PCC are of value for studies benchmarking clinics for their patientcenteredness. In addition, they help clinicians to determine how to tailor their care to their individual patients.