Endocrine Abstracts

Introduction: Existing educational resources for polycystic ovary syndrome (PCOS) have limited inclusion of patient perspectives. We invited women with PCOS to share their lived experiences to understand their perception and opinion on the current standard of care.

Methodology: Women with PCOS aged 18-60 years were invited to complete an online survey in April and May 2021. The survey had open questions focused on their lived experiences with PCOS. Participants had the option to share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from audio were transcribed verbatim. Responses were initially coded by two study members independently, using a thematic inductive method with NVivo 12. These codes were then reviewed by two senior study members to identify common themes.

Results: 43 of 45 participants had a formal diagnosis of PCOS, the remaining two had suspected PCOS which was under investigation. Four participants opted to share their views as voice note recordings. Overall, five common themes emerged: experience of symptoms (504 references by 42 participants), patient journey (421 references by 42 participants), knowledge (197 references by 40 participants), peer-to-peer advice (162 references by 41 participants), and impact of PCOS on social aspects of life (42 references by 19 participants). Poor mental health was most commonly reported (83.3% of participants), followed by dermatological (81.0%) and menstrual issues (76.2%). Participants were generally dissatisfied with the care they received (88.1%). A lengthy diagnostic journey was reported in 35.7% of cases. 52.6% felt less feminine, particularly with regards to weight gain and infertility. Women with PCOS said that others with the condition should educate themselves and be proactive in their management. 46.3% reported that being more enlightened regarding their condition improved their health outcomes and enabled them to advocate for their own care.

Conclusion: PCOS has wide-ranging consequences for women living with the condition, with many feeling dissatisfied with the clinical support they currently receive. Education is important to improve their understanding of their condition and encourage a proactive approach to their own care. Therefore, we propose involving people with PCOS to co-create educational resources informed by lived experiences which will help those newly diagnosed to gain a more comprehensive and realistic understanding of the condition from fellow sufferers.