Women's experiences of polycystic ovary syndrome diagnosis

Background: Polycystic ovary syndrome (PCOS) is a common and complex endocrine condition affecting women across the lifespan. Diagnosis experience may impact on physical and emotional well-being and engagement with evidence-based management and treatment.

Objective: To explore the perceived experience of PCOS diagnosis, prior to development of an evidence-based guideline for PCOS assessment and management.

Methods: Cross-sectional study, involving devised questionnaires completed by a national, community-based sample of 210 women with a previous medical diagnosis of PCOS, aged 18-45 years, in Australia. Main outcome measures included time to diagnosis, number of health professionals seen and information provision.

Results: Mean age (± standard deviation) was 31 (±5.8) years and median body mass index (interquartile range) was 30 (12) kg/m(2). For 24% of women, PCOS diagnosis took >2 years and 39% saw three or more health professionals before diagnosis was made. The majority (60%) reported they were not given or referred to information sources at time of diagnosis, 20% reported receiving information and 20% were given information but felt it was inadequate. Of those who reported provision of information at diagnosis, 62% felt dissatisfied with or indifferent to information provided about PCOS, 79% reported being provided with information about lifestyle management, 89% reported being provided with information about medical therapy, 83% about long-term complications and 95% about potential infertility.

Conclusions: PCOS diagnosis experience can be lengthy, involve many health professionals and leave unmet information needs. The current findings inform the need for evidence-based PCOS resources for women and health professionals.