Polycystic ovary syndrome: Perceptions and attitudes of women and primary health care physicians on features on PCOS and renaming the syndrome

Abstract

CONTEXT: Polycystic ovary syndrome (PCOS) is an under-recognized, common, and complex endocrinopathy. The name PCOS is a misnomer, and there have been calls for a change to reflect the broader clinical syndrome. OBJECTIVE: The aim of the study was to determine perceptions held by women and primary health care physicians around key clinical features of PCOS and attitudes toward current and alternative names for the syndrome. DESIGN: We conducted a cross-sectional study utilizing a devised questionnaire. SETTING: Participants were recruited throughout Australia via professional associations, women’s health organizations, and a PCOS support group. PARTICIPANTS: Fifty-seven women with PCOS and 105 primary care physicians participated in the study. MAIN OUTCOME MEASURES: Perceptions of key clinical PCOS features and attitudes toward current and alternative syndrome names were measured. RESULTS: Irregular periods were identified as a key clinical feature of the diagnosis by 86% of the women with PCOS and 90% of the primary care physicians. In both groups, 60% also identified hormone imbalance as a key feature. Among women with PCOS, 47% incorrectly identified ovarian cysts as key, 48% felt the current name was confusing, and 51% supported a change. Most primary care physicians agreed that the name is confusing (74%) and needs changing (81%); however, opinions on specific alternative names were divided. CONCLUSIONS: The name “polycystic ovary syndrome” is perceived as confusing, and there is general support for a change to reflect the broader clinical syndrome. Engagement of primary health care physicians and consumers is strongly recommended to ensure that an alternative name enhances understanding and recognition of the syndrome and its complex features.