Yasmin Luu, Helena Teede, Melanie Gibson, Alexia Peña
<p>Polycystic ovary syndrome (PCOS) is a common endocrine condition. Adolescent PCOS diagnostic criteria include the combination of menstrual irregularities and hyperandrogenism [<span>1, 2</span>]. Polycystic ovarian morphology is not part of the adolescent diagnostic criteria [<span>3</span>]; therefore, the name of the condition is likely to be confusing. Women with PCOS report the condition's name is confusing [<span>4</span>], however, no studies have investigated adolescents' views. We aimed to investigate adolescents' perspectives on the name ‘PCOS’.</p><p>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 [<span>5</span>]. 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.</p><p>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.</p><p>Statistical analysis was performed with Stata software version 14.0 (StataCorp), and categorical data are presented as counts and proportions.</p><p>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 (<i>n</i> = 62, 78%), lived in metropolitan areas (<i>n</i> = 53, 66%), and in Australia (<i>n</i> = 70, 88%).</p><p>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 (<i>n</i> = 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 (<i>n</i> = 33, 41%), and almost half felt that increased education about PCOS and a name change are both needed (<i>n</i> = 37, 46%). Sixty-six (83%) adolescents agreed/strongly agreed that increased education about PCOS would be more effective than a name change (Figure 1).</p><p>Over half o
{"title":"Cross-Sectional Study on Adolescents' Views on Changing the Name of Polycystic Ovary Syndrome: The Importance of Education on the Condition","authors":"Yasmin Luu, Helena Teede, Melanie Gibson, Alexia Peña","doi":"10.1111/jpc.70225","DOIUrl":"10.1111/jpc.70225","url":null,"abstract":"<p>Polycystic ovary syndrome (PCOS) is a common endocrine condition. Adolescent PCOS diagnostic criteria include the combination of menstrual irregularities and hyperandrogenism [<span>1, 2</span>]. Polycystic ovarian morphology is not part of the adolescent diagnostic criteria [<span>3</span>]; therefore, the name of the condition is likely to be confusing. Women with PCOS report the condition's name is confusing [<span>4</span>], however, no studies have investigated adolescents' views. We aimed to investigate adolescents' perspectives on the name ‘PCOS’.</p><p>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 [<span>5</span>]. 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.</p><p>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.</p><p>Statistical analysis was performed with Stata software version 14.0 (StataCorp), and categorical data are presented as counts and proportions.</p><p>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 (<i>n</i> = 62, 78%), lived in metropolitan areas (<i>n</i> = 53, 66%), and in Australia (<i>n</i> = 70, 88%).</p><p>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 (<i>n</i> = 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 (<i>n</i> = 33, 41%), and almost half felt that increased education about PCOS and a name change are both needed (<i>n</i> = 37, 46%). Sixty-six (83%) adolescents agreed/strongly agreed that increased education about PCOS would be more effective than a name change (Figure 1).</p><p>Over half o","PeriodicalId":16648,"journal":{"name":"Journal of paediatrics and child health","volume":"62 1","pages":"143-145"},"PeriodicalIF":1.4,"publicationDate":"2025-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jpc.70225","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145564157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}