ESPE Abstracts (2018) 89 P-P2-356

Diagnostic Experiences and Concerns in Adolescents with Polycystic Ovary Syndrome

Alexia Peñaa,b, Melanie Gibson-Helmc, Stephanie Byrneb, Sarah Cashd, Louise Hulld & Helena Teedec

aThe University of Adelaide, Adelaide, Australia; bWomen’s and Children’s Hospital – Endocrine and Diabetes, North Adelaide, Australia; cMonash Centre for Health Research and Implementation – Monash University, Melbourne, Australia; dWomen’s and Children’s Hospital – Obstetrics and Gynaecology, North Adelaide, Australia

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 12–19 years with a confirmed PCOS diagnosis recruited from specialist clinics (Women’s and Children’s 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 doctor’s visit for PCOS symptoms (16 (66.7%) 9:<6 months and 7:6–12 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 condition’s 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.

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