Health-related decision-making experiences of people with endometriosis: a qualitative analysis

Objective: Endometriosis is an incurable inflammatory condition, characterised by chronic pelvic pain, among other symptoms. Optimal symptom management is dependent on an individual’s preferences, underscoring the need for person-centred care and shared decision-making. Yet research on decisional support needs of people with endometriosis (PWE) is sparse. This qualitative study aimed to explore decisional processes and decision support needs among PWE regarding endometriosis management. Methods and Measures: Australian adults (N = 41) diagnosed with endometriosis were recruited from support communities to participate in focus groups. Open-ended questions prompted discussion about perceived challenges and facilitators of treatment decision-making. Multiple coders thematically analysed the transcribed qualitative data using the template approach. Results: Four themes were identified: (1) Challenges of accessing pertinent, quality information (sub-themes 1a: Inadequate information from healthcare professionals and 1b: Navigating external information sources); (2) Feeling empowered to self-advocate; (3) Balancing costs and benefits (sub-themes 3a: Financial considerations; and 3b: Balancing family needs); and, (4) Emotional toll of decision-making. Novel findings included emphasis by PWE on family needs when making decisions, and reports that decision-making eroded their resilience. Conclusion: Findings highlight difficulties experienced by PWE regarding endometriosis management, indicating a comprehensive decision support resource, such as a patient decision aid, is warranted.