Women's experiences of polycystic ovary syndrome diagnosis

Melanie Gibson-Helm, Isabelle M Lucas, Jacqueline Boyle, Helena Jane Teede

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66 Citations (Scopus)


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/m2. 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.
Original languageEnglish
Pages (from-to)545 - 549
Number of pages5
JournalFamily Practice
Issue number5
Publication statusPublished - 2014

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