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

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.

Figure 1.

Key clinical features of PCOS of most importance to women (n = 1379). Increased metabolic risk included gestational diabetes, type 2 diabetes, and cardiovascular disease risk factors. Other answer options included body image dissatisfaction (8.3%), reduced quality of life (7.1%), premenstrual syndrome (3.4%), endometrial cancer (3.0%), sleep apnea and snoring (2.8%), fatty liver (2.8%), improvement of symptoms after weight loss (2.6%), and improvement of symptoms with exercise (1.0%).