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Delayed PCOS diagnosis a concern for many, international study finds

By Jane Lewis
Many women with polycystic ovary syndrome (PCOS) visit multiple health professionals over several years before receiving a diagnosis, and receive inadequate information about their condition, according to the results of a large international study in the Journal of Clinical Endocrinology & Metabolism

These major gaps in early diagnosis, education and support are ‘clear opportunities for improving patient experience,’ the authors concluded. 

‘PCOS is the commonest hormone condition in women of reproductive age, with a prevalence of between 9% and 21%,’ Professor Rob Norman, Professor of Reproductive and Periconceptual Medicine at the University of Adelaide, told Endocrinology Today. ‘Getting a consistent diagnosis is critically important, as this paper highlights.’ 

Despite its high prevalence, PCOS is an under-recognised condition, say the study’s authors, who used an online questionnaire to investigate diagnosis experiences, information provided, and concerns about PCOS among 1385 women living in North America (53.0%), Europe (42.2%) or other world regions (4.9%). 

Nearly half (47.1%) of participants reported seeing three or more health professionals before a PCOS diagnosis was established, and for one third (33.6%), this took longer than two years. A minority of women (35.2%) were satisfied with their diagnosis experience, and only 15.6% were satisfied with the information about PCOS they received at the time of diagnosis. The most common concerns women expressed about PCOS were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%), infertility (44.5%) and hirsutism (40%). 

These findings will ‘inform an initiative to develop international evidence-based guidelines, co-designed consumer and health professional resources and international dissemination to improve diagnosis experience, education, management and health outcomes,’ the authors stated. 

According to Professor Norman, PCOS is generally ‘much better handled’ in Australia than in other countries. ‘We have developed NHMRC guidelines on diagnosis and treatment, we have a health service that doesn’t discriminate against people on the basis of finances, and I believe the models of care that have been set up here are superior to those anywhere else in the world,’ he said. 

‘What this paper shows is that these models care and diagnostic dilemmas need to be solved in other parts of the world, and Australia is making great strides towards helping accomplish this.’
JCEM 2016; jc.20162963. 

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