Qualitatively Exploring Challenges in Treatment Decision-Making for Endometriosis

Endometriosis is a chronic systemic inflammatory disease with often-debilitating symptoms. It has no cure, and research reports widespread dissatisfaction among people living with endometriosis (PLWE) about treatment management. In the absence of a gold-standard treatment, the best symptom management approach is highly dependent on individual patient preferences and values, making shared decision-making (SDM) vital. Patient decision aids (PtDAs) are interventions which promote patient decision-making and SDM, but there is no comprehensive PtDA for endometriosis, and research on the decisional support needs of individuals with this condition is sparse. This qualitative research explored the facilitators, challenges and support needs of treatment decision-making by PLWE, canvassing the perspectives of both patients and healthcare professionals (HPs). Transcribed data from online focus groups of Australian adults with endometriosis (N = 41), and interviews with Australian HPs specialising in endometriosis care (N = 13) were thematically analysed using the template approach and verified using multiple coders. Both groups identified challenges in: accessing valid and trustworthy information about endometriosis and its treatments; the need for PLWE to self-advocate; a mismatch in priorities between some PLWE and HPs; and maintaining psychological health despite the emotional toll of decision-making. Novel findings included the heavy emphasis individuals with endometriosis placed on family needs when choosing treatments, and maladaptive levels of hope potentially clouding PLWE decision-making. The combined findings highlight that people living with endometriosis face difficulties in assessing and choosing treatments, indicating that a comprehensive PtDA intervention could support and facilitate decision-making and SDM in endometriosis symptom management.