The challenges with managing polycystic ovary syndrome: A qualitative study of women's and clinicians’ experiences

Objective: To explore clinicians’ and women's views and experiences with managing polycystic ovary syndrome (PCOS). Methods: Semi-structured interviews with 36 clinicians and 26 women with PCOS. Clinicians were recruited through advertising via relevant professional organisations, snowballing and contacting clinics across Australia. Women with PCOS were recruited through social media advertising. Transcribed audio-recordings were analysed thematically using Framework analysis. Results: Findings across women with PCOS and clinician interviews were organised into three themes. Both women and clinicians experienced 1) challenges with managing PCOS, often stemming from the disparate and wide spectrum of presentations, issues with current treatment options (including limited evidence) and the long-term nature of management. Both spoke about 2) online information about PCOS and alternative treatments, including lack of relevant information and widespread misinformation. 3) Follow-up and continuity of care, where we found notable differences between women's and clinicians’ expectations. Conclusions: This is the first study to explore both clinicians’ and women's experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition. Practice implications: Clarifying and addressing patient expectations, providing personalised counselling and information according to PCOS phenotype and a multidisciplinary approach may reduce uncertainty and improve patient-centred care.