Abstract and Introduction
Abstract
Objective: Women with polycystic ovary syndrome (PCOS) report delayed diagnosis of the condition and receiving inadequate information at diagnosis. No studies have investigated the diagnosis experiences of adolescents with PCOS. Our objective was to investigate the adolescents' experiences of PCOS diagnosis and their concerns about the condition.
Design: Cross-sectional study.
Patient(s): Eighty-six adolescents (aged 13–19 years) were diagnosed with PCOS by a medical practitioner. Adolescents were recruited consecutively from paediatric and women's outpatient hospital clinics in South Australia and online PCOS support organisations in Australia and the United Kingdom (May 2017–June 2019).
Measurements: PCOS diagnosis experience and information received at the time of diagnosis were evaluated using a validated questionnaire.
Results: The majority of the adolescents (n = 67, 78%) were diagnosed with PCOS in less than 1 year from their first doctor's visit but 11 (13%) were diagnosed more than 2 years from that visit. Fifty-three adolescents (66%) saw 1–2 health professionals before the diagnosis was made. Forty-nine adolescents (57%) were satisfied with the overall diagnosis experience but adolescents were either dissatisfied or reported that the information was not mentioned after diagnosis in relation to lifestyle management (n = 47, 55%), long-term complications (n = 53, 62%) and emotional support and counselling (n = 65, 76%).
Conclusions: The majority of adolescent girls with PCOS are receiving a timely diagnosis, but delayed diagnosis still occurs in a minority of adolescents. Current information provided at diagnosis is not meeting the needs of adolescents and is a lost opportunity for preventive healthcare at a critical transition to adult care period.
Introduction
Polycystic ovary syndrome (PCOS) is a common endocrine condition affecting 8%–13% of women in the reproductive age,[1] and 3%–11% of adolescent girls[2] depending on the diagnostic criteria used and population studied.[3–6] PCOS is characterized by irregular menstrual cycles, clinical signs of hyperandrogenism (hirsutism and/or acne) and/or hyperandrogenemia; and polycystic ovarian morphology on ultrasound.[7] In addition to these symptoms, women with PCOS are at a greater risk of weight gain and excess weight, gestational diabetes, type 2 diabetes, infertility, symptoms of depression and anxiety and impaired quality of life.[7–9]
The diagnostic criteria for PCOS in adolescent girls have been controversial, primarily because the diagnostic features used in adult women such as irregular menstrual cycles, acne and polycystic ovary morphology, may be normal pubertal physiologic events.[3–6] These challenges have led to concerns about under and over-diagnosis of PCOS during adolescence.[6,10,11] The international evidence-based guideline for PCOS offers clarification of the diagnostic criteria during adolescence to avoid under and over-diagnosis.[7,12] It recommends that the diagnosis of PCOS in an adolescent girl should be made based on the presence of irregular menstrual cycles well defined according to time postmenarche and clinical and/or biochemical evidence of hyperandrogenism (after exclusion of other pathological conditions that mimic PCOS).[7,12] Polycystic ovary morphology on pelvic ultrasound is not required to diagnose PCOS during adolescence as can lead to over-diagnosis.[6,7,12]
Studies exploring PCOS diagnosis experience in adult women show that many women experience delays, see multiple health professionals before the diagnosis is made, and they are generally not satisfied with the information provided at the diagnosis.[13–16] No study has specifically investigated adolescent girls' experiences of PCOS diagnosis, including perceived information provision. However, a small qualitative study designed to evaluate the quality of life suggests that adolescents may have similarly frustrating diagnosis experiences.[17] Delays in PCOS diagnosis are lost opportunities to manage distressing symptoms, provide counselling regarding future fertility and support engagement in preventive strategies regarding weight, metabolic and psychological complications.[18] Additionally, receiving a diagnosis without receiving comprehensive, accurate and personalized information may cause feelings of uncertainty, anxiety or lack of control.[7,17,19,20] Furthermore, overdiagnosis of PCOS can be an issue during adolescence when there are important physiological and transitional changes in puberty, insulin resistance, menstrual cycles and a high prevalence of polycystic ovarian morphology.
The objective of this study was to investigate the PCOS diagnosis experiences of adolescent girls, their information needs and key concerns. It was hypothesized that adolescent girls with PCOS, similarly to adult women, will be not satisfied with the process of diagnosis of PCOS and have unmet information needs.
Clin Endocrinol. 2022;96(1):62-69. © 2022 Blackwell Publishing
