Qualitative study reveals divergent perceptions of hormonal therapy efficacy in endometriosis management

A qualitative study conducted at university hospitals and an academic research center explored perceptions of hormonal treatment options in endometriosis management. The study included 20 patients with endometriosis and 13 healthcare professionals involved in their care through focus groups. No specific intervention or comparator was examined; instead, researchers investigated representations of treatment effectiveness, emotions associated with medical management, and perceived impacts on patient-provider and patient-environment relationships.

The main findings revealed a discrepancy between patients and doctors regarding the concept of hormonal therapy efficacy. Healthcare professionals primarily prioritized long-term amenorrhea as a treatment goal, while patients expressed an immediate need for pain reduction. Patient-reported experiences highlighted a perceived lack of listening and empathy from providers, a shared-information deficit regarding treatment options and side effects, and a desire to involve partners and family in care decisions.

Communication issues were reported to contribute to significant mental burden on both patients and healthcare professionals. For clinicians, this burden arose primarily from the resource-intensive demands of endometriosis management. For patients, mental burden was driven more by the need to take an active role in their own care to compensate for insufficient information provided by physicians. No safety or tolerability data were reported.

Key limitations include the qualitative nature of the study, which provides perceptions and experiences but no quantitative measures of effect. The small sample size of 33 total participants and specific setting limit generalizability beyond study participants. The research was designed to help create a shared decision-making tool for endometriosis management, suggesting potential practice relevance in improving communication and shared decision-making processes, though the study itself does not test such interventions.