Understanding Women With Endometriosis and Their Treatment Expectations: Baseline Results of a Clinical Cohort Study

Abstract Introduction. Endometriosis is still somewhat unknown to the general public, often overlooked and not treated satisfactorily. 20-30% of affected women report persistent pain disability even after successful surgical removal of endometriotic tissue via laparoscopy. Medical factors can not explain this symptom persistence. Therefore, psychological factors, such as treatment expectations, might play a role for treatment outcomes of endometriosis and women’s quality of life. This study aimed to characterise women with endometriosis, describe their treatment expectations before laparoscopy, and identify predictors of treatment expectations. Method. This study characterizes a clinical cohort of N = 393 women with endometriosis treated in a specialized endometriosis centre in Germany. Treatment expectations were assessed using the Treatment Expectation Questionnaire and the Generic Rating Scale for Treatment Expectations. Medical characteristics were evaluated with a self-conducted case report form. Analysis. Descriptive and multiple linear regression analyses with ten different treatment expectations as the dependent variable were conducted. Results. The mean endometriosis-related pain disability score was 30.77 ± 13.28, and the mean somatic symptom severity score was 15.61 ± 5.07. 40.2% (n = 158) of the participants had a high likelihood of having major depression, and 39.9% (n = 157) were highly likely to have a general anxiety disorder. Treatment expectations concerning the laparoscopy of participants were rather positive. Multiple linear regressions show that endometriosis-related pain disability and state anxiety predict treatment expectations of women with endometriosis. Medical characteristics were not significantly associated with treatment expectations. Conclusion. Affected women are highly physically and psychologically burdened, mostly over several years. Patients with higher pain disability and anxiety are especially prone to negative treatment expectations. Trial Registration Number: ID NCT05019612 (ClinicalTrials.gov), registration date August 25th.