Demographic and clinical characteristics determining patient-centeredness in endometriosis care

Purpose The primary aim of this study was to assess patient-centeredness of endometriosis care in a national sample of Swedish women with endometriosis. The secondary aims were to assess the importance of different dimensions of endometriosis care and to analyze demographic and clinical determinants associated with the experience of patient-centeredness. Methods This cross-sectional study included 476 women with confirmed endometriosis. An invitation to participate was sent to 1000 randomly selected women aged >= 18 years having any endometriosis diagnosis and who had visited a gynecological clinic due to endometriosis problems any time during the past five years. Participants were recruited from ten different-sized gynecology clinics all over Sweden. The invitation letter had a link to the digital survey, which consisted of demographic and clinical questions, and the ENDOCARE questionnaire (ECQ). ECQ measures experiences, importance and patient-centeredness of ten dimensions of endometriosis care. Univariate and multiple regression analyses were used to analyze which patient-specific demographic and clinical determinants were associated with the experience of patient-centeredness. Results The response rate was 48%. The results indicate that Swedish women with endometriosis experience low patient-centeredness and rate relational aspects with healthcare professionals as the most important aspects of care. Having a gynecologist with patient responsibility was an independent predictor for high patient-centeredness. Conclusion Women with endometriosis in Sweden experience low patient-centeredness, reflecting the urgent need for improvement. More effort should be given to develop the relational aspects of care. Women with endometriosis should have a responsible gynecologist to care for treatment and follow-up.