Many women with polycystic ovary syndrome (PCOS) have a delayed diagnosis after seeing multiple health care providers for their symptoms impacting on their physical and emotional well-being (1). In adolescent girls, PCOS diagnosis is even more controversial and challenging than in adult women yet there have been no studies in adolescents evaluating diagnostic experience, their knowledge and concerns. We aimed to evaluate diagnostic experience and concerns regarding PCOS in an adolescent population. Adolescents aged 1219 years with a confirmed PCOS diagnosis recruited from specialist clinics (Womens and Childrens Hospital (Adelaide) completed a validated questionnaire (1) and a community sample of adolescents with PCOS recruited via Polycystic Ovary Syndrome Association of Australia (POSAA) and Health Consumer Alliance of South Australia completed the same questionnaire. Twenty four girls (mean (S.D.) age 17 (1.7) years, menarche 12.1 (1.3) years, 15 Caucasians, 8 Asians and 1 Aboriginal) completed the questionnaire. Two had a mother diagnosed with PCOS. Whilst the majority of the adolescents were diagnosed in less than 1 year from their first doctors visit for PCOS symptoms (16 (66.7%) 9:<6 months and 7:612 months), a third of the adolescents were diagnosed after 1 year (4 after 1 year, 4 after 2 years). 17 adolescents saw ≤2 health professionals before diagnosis was made and 7 saw >2. The majority of the adolescents were satisfied with the diagnosis experience (5: very satisfied and 14 satisfied) and satisfied with PCOS information received at diagnosis (12 very satisfied and 8 satisfied). The majority of the adolescents were satisfied with information provided at diagnosis in relation to lifestyle, medical therapy and long term complications but not in relation to emotional support and counselling. The most common key features of PCOS identified by participants as the most important to them were irregular menstrual cycles (14 (58.3%)), excess hair (13 (54.1%)) weight gain (10 (41.7%)), and difficulties losing weight (8 (33.3%)). The preferred method of support by adolescents was educational materials (87.5%) followed by patient forums (55.0%) and a consumer website (42.1%). Twenty agreed that education was more important than a change in the conditions name. This is the first study evaluating diagnosis experiences in adolescents with PCOS and showed that in contrast to adult women the majority of adolescents are satisfied with diagnosis experience and information received. Delayed PCOS diagnosis also occurs during adolescence.
(1) Gibson-Helm M et al., J Clin Endocrinol Metab, 2017.
27 - 29 Sep 2018
European Society for Paediatric Endocrinology