Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome

Melanie Gibson-Helm; Helena Teede; Andrea Dunaif; Anuja Dokras

Disclosures

J Clin Endocrinol Metab. 2017;102(2):604-612. 

In This Article

Abstract and Introduction

Abstract

Context: Polycystic ovary syndrome (PCOS) is a complex, chronic, and under-recognized disorder. Diagnosis experience may have lasting effects on well-being and self-management.

Objective: To investigate PCOS diagnosis experiences, information provided, and concerns about PCOS.

Design: Cross-sectional study using an online questionnaire.

Setting: Recruitment via support group web sites in 2015 to 2016.

Participants: There were 1385 women with a reported diagnosis of PCOS who were living in North America (53.0%), Europe (42.2%), or other world regions (4.9%); of these, 64.8% were 18 to 35 years of age.

Main Outcome Measures: Satisfaction with PCOS diagnosis experience, satisfaction with PCOS information received at the time of diagnosis, and current concerns about PCOS.

Results: One-third or more of women reported >2 years (33.6%) and ≥3 health professionals (47.1%) before a diagnosis was established. Few were satisfied with their diagnosis experience (35.2%) or with the information they received (15.6%). Satisfaction with information received was positively associated with diagnosis satisfaction [odds ratio (OR), 7.0; 95% confidence interval (CI), 4.9 to 9.9]; seeing ≥5 health professionals (OR, 0.5; 95% CI, 0.3 to 0.8) and longer time to diagnosis (>2 years; OR, 0.4; 95% CI, 0.3 to 0.6) were negatively associated with diagnosis satisfaction (independent of time since diagnosis, age, and world region). Women's most common concerns were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%), and infertility (44.5%).

Conclusions: In the largest study of PCOS diagnosis experiences, many women reported delayed diagnosis and inadequate information. These gaps in early diagnosis, education, and support are clear opportunities for improving patient experience.

Introduction

Polycystic ovary syndrome (PCOS) is an endocrine condition affecting 9% to 18% of reproductive-aged women.[1–3] Diagnosis commonly requires at least 2 of the 3 following features: polycystic ovaries on ultrasound, biochemical/clinical hyperandrogenism, and oligo/amenorrhea, with exclusion of other etiologies.[4] Despite the high prevalence, PCOS is an underrecognized condition, and many women remain undiagnosed.[1]

PCOS affects health and well-being over the life span.[5,6] It is the most common cause of anovulatory infertility,[7] and women with PCOS have greater prevalence type 2 diabetes,[8] risk factors for cardiovascular disease,[8] and symptoms of anxiety and depression.[9,10] PCOS is exacerbated by obesity,[11] and lifestyle management (weight management or loss, healthy diet, and exercise) and the oral contraceptive pill are first-line treatments.[12,13]

A previous Australian survey highlighted that PCOS diagnosis is often delayed, involves many health professionals, and leaves women with unmet information needs.[14] These experiences may have long-term consequences, with a reported association between the length of time to receive a PCOS diagnosis and both anxiety and depression symptoms.[15] Diagnosis experience could also affect self-management and the ability to improve lifestyle, the information sources that women access, and participation in regular screening for metabolic complications.[16,17] Despite these potential impacts, there have been few comprehensive studies investigating diagnosis experience. Information needs have been investigated in PCOS,[16–19] but studies have been small or limited in scope.

This study aimed to investigate women's diagnosis experiences, information provided, main concerns about PCOS, and support needs in a large group of women with PCOS, primarily in North America and Europe. The findings will inform an international initiative to improve diagnosis and education to better meet women's needs and optimize early engagement with evidence-based management. This international approach builds on prior research about PCOS diagnosis experiences in Australia and investigates how women's needs may differ in different regions.

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