Cross‐Sectional Study on Adolescents' Views on Changing the Name of Polycystic Ovary Syndrome: The Importance of Education on the Condition

Polycystic ovary syndrome (PCOS) is a common endocrine condition. Adolescent PCOS diagnostic criteria include the combination of menstrual irregularities and hyperandrogenism [1, 2]. Polycystic ovarian morphology is not part of the adolescent diagnostic criteria [3]; therefore, the name of the condition is likely to be confusing. Women with PCOS report the condition's name is confusing [4], however, no studies have investigated adolescents' views. We aimed to investigate adolescents' perspectives on the name ‘PCOS’. Cross-sectional questionnaire-based study including adolescent girls aged between 12 and 19 years who have been diagnosed with PCOS by a medical practitioner were eligible to participate. Adolescents were recruited from paediatric clinics at the Women's and Children's Hospital (WCH) in Adelaide and through Australian/United Kingdom-based PCOS support organisations [5]. One part of the questionnaire investigated adolescents' views on the name ‘PCOS’ (using a 5-point Likert scale) and the name's importance to different stakeholders. This study was part of a broader study, with 11 questions relevant to this substudy compared to the full 32-question survey. The study was approved by the WCH Research Ethics Committee (HREC/17/WCHN/15). Informed written consent and/or assent were obtained from all participants who completed the questionnaire during their clinic visit and from their parents/guardians if participants were younger than 18 years. For participants who completed the online questionnaire, completion of the online survey was taken as consent to participate in the study as per the introduction page of the survey. Statistical analysis was performed with Stata software version 14.0 (StataCorp), and categorical data are presented as counts and proportions. Eighty adolescents completed the full questionnaire (mean ± SD age 16.7 ± 1.8 years, menarche 12.2 ± 1.5 years). Most adolescents had been diagnosed with PCOS 2 years prior to completing the questionnaire (n = 62, 78%), lived in metropolitan areas (n = 53, 66%), and in Australia (n = 70, 88%). There were diverse opinions among adolescents about whether the name can be confusing (30 [38%] disagreed/strongly disagreed, 21 [26%] were neutral, and 29 [36%] agreed/strongly agreed). More than half of adolescents (n = 41, 51%) agreed/strongly agreed that the name should stay the same, whilst 26 (33%) neither disagreed nor agreed, and 13 (16%) disagreed/strongly disagreed. Nearly half of adolescents were neutral about whether the name ‘PCOS’ should be changed to reflect the range of symptoms (n = 33, 41%), and almost half felt that increased education about PCOS and a name change are both needed (n = 37, 46%). Sixty-six (83%) adolescents agreed/strongly agreed that increased education about PCOS would be more effective than a name change (Figure 1). Over half of adolescents with PCOS (n = 50, 63%) felt the name is important for women and adolescents with PCOS, but were equally split about its importance for medical doctors (n = 40, 50%). Overall, adolescents felt the name is less important for family/friends of those affected with PCOS (n = 38, 48%), health professionals (n = 30, 38%), researchers (n = 37, 46%), advocacy organisations (n = 32, 40%), and the community (n = 29, 36%). We have reported for the first time on adolescents' views in relation to the name of PCOS. Adolescent girls who have been diagnosed with PCOS by a medical practitioner have a diverse opinion in relation to the name ‘PCOS’ being confusing or the need for the name to be changed. This contrasts with a recent large longitudinal survey across six continents between 2015 and 2023, including the views of 4246 adult women (86.2% older than 25 years of age and 13.8% 18–25 years of age) and 3462 healthcare professionals, whereby the majority agreed that the name ‘PCOS’ should be changed to reflect the broader clinical syndrome (85.6% and 76.1% respectively) [6]. The majority of adolescents in our study and healthcare professionals in the 2014 study agreed that increased education would be more effective than a name change, with no data in relation to this in women with PCOS [4]. Of note, this data was collected prior to the change in adolescent diagnostic criteria that no longer include ovarian morphology evaluated by pelvic ultrasound [1, 2] and involved a relatively small sample size from high-income countries, with a need for further research in this area. Data on renaming PCOS was first documented in 1995 as the ‘ovarian cysts’ present in women with PCOS have been incorrectly labelled as cysts, not as arrested follicles [7]. The 2012 National Institute of Health Evidence-based Methodology Workshop on Polycystic Ovary Syndrome acknowledged the name ‘PCOS’ ‘causes confusion and is a barrier to effective education of clinicians and communication with the public and research funders’ [8]. Since then, the 2018 and 2023 PCOS international evidence-based guidelines improved recognition of other features of the condition, including reproductive, cardiometabolic, hormonal, and psychological features. An option for retaining the acronym ‘PCOS’, but using different terms for each letter, was supported by healthcare professionals [6]. The processes required to define the most acceptable name are underway, and its implementation, including education and awareness, will be required. Importantly, irrespective of the name of the condition, adolescent girls who have been diagnosed with PCOS by a medical practitioner place a high value on general education about PCOS more than a name change. Resources appropriate for this life stage should be developed, made freely available to adolescents, and provided by paediatricians and other healthcare providers. This study was supported by a National Health and Medical Research Council Centre of Research Excellence Project Support Grant and MS McLeod Departmental Research Grant. Funders had no role in the design of the study. The authors would also like to thank the polycystic ovary syndrome (PCOS) support groups (Polycystic Ovary Syndrome Association of Australia and Verity PCOS United Kingdom) for their assistance with the promotion of the questionnaires. The authors declare no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request.