P-334 Are measurements of patient-centeredness of endometriosis care and quality of life in women with endometriosis associated?

Abstract

Study question To examine the hypothesis that experiences with patient-centred endometriosis care are associated with the endometriosis-specific quality of life dimensions ‘emotional wellbeing’ and ‘social support’. Summary answer Positive associations were found between experienced patient-centeredness of care and the quality of life domains ‘emotional well-being’ and ‘social support’. What is known already Women with endometriosis have lower quality of life. Furthermore, research showed that the patient-centeredness of endometriosis care could still be improved. The quality of the provided endometriosis care might impact women’s quality of life, as demonstrated in the field of fertility care. A previous explorative study identified associations between patient-centred endometriosis care and two in five dimensions of endometriosis-specific quality of life (i.e. ‘emotional well-being’ and ‘social support’) but concluded that a more focussed and adequately powered study was needed. Study design, size, duration A secondary regression analysis of two cross-sectional cohort studies was performed. Both studies investigated patient-centeredness of endometriosis care and endometriosis-specific quality of life using respectively the ENDOCARE questionnaire (ECQ) and the Endometriosis Health Profile 30 (EHP-30). In total the data from 300 women was eligible for analysis, exceeding the, according to our power calculation, required sample size of 200 women. Participants/materials, setting, methods The participating women all had surgically proven endometriosis and were recruited by one secondary and two tertiary endometriosis clinics in the Netherlands. The regression analysis focused on the previously found association between the ten dimensions of the ECQ and the EHP-30 domains ‘emotional well-being’ and ‘social support’ rather than all five EHP-30 domains. After the Bonferroni correction to limit type I errors, the adjusted p-value was 0.003 (0.05/20). Main results and the role of chance The participating women had a mean age of 35.7 years and had predominantly been diagnosed with moderate to severe (68.6%). Regarding the EHP-30 domain ‘emotional well-being’, an association was found with the following five patient-centeredness dimensions: ‘respect for patients’ values, preferences and expressed needs’ (p = 0.046, Beta=0.159), ‘coordination and integration of care’ (p = 0.013, Beta=0.193), ‘information, communication and integration of care’ (p = 0.010, Beta=0.258), ‘emotional support and alleviation of fear and anxiety’ (p = 0.010, Beta=0.178), and ‘continuity and transition’ (p = 0.015, Beta=0.179). None of the associations between the EHP-30 domain ‘emotional well-being’ and a dimension of patient-centred endometriosis care, were significant when compared to the Bonferroni corrected p-value (all p ≥ 0.010). The EHP-30 domain ‘social support’ proved to be significantly associated to the following three dimensions of patient-centered endometriosis care (in order of strength): ‘information, communication and integration of care’ (p < 0.001, Beta=0.436), ‘coordination and integration of care’ (p = 0.001, Beta=0.307), and ‘emotional support and alleviation of fear and anxiety’ (p = 0.002, Beta=0.259). Limitations, reasons for caution This cross-sectional studies identified associations rather than proving causality between experiencing less patient-centeredness of care and having lower quality of life. Nevertheless, it is very tangible that some causality exists, either directly or indirectly (e.g. through empowerment) and that by improving patient-centeredness, quality of life might be improved as well. Wider implications of the findings Improving the patient-centeredness of endometriosis care was already considered an important goal, but even more so given its association with women’s quality of life, which is increasingly considered the ultimate measure of health care quality. Trial registration number not applicable