(VP021) CHALLENGES IN HEALTH AND HEALTHCARE MANAGEMENT ACROSS THE LIFESPAN FOR WOMEN WITH POLYCYSTIC OVARY SYNDROME IN CANADA

Background: Polycystic Ovary Syndrome (PCOS) affects 1 in 10 women yet remains understudied despite being the most common endocrine-metabolic disorder in women affecting health and quality of life across the lifespan. To date we do not have a good understanding of the scale of the problem, in terms of its clinical diagnosis, symptom severity, societal impact, health across the lifespan and health care management. The aim of this study was to assess the perceptions of health status, health care experience and lifestyle management support of women with PCOS in Canada.

METHODS AND RESULTS: We conducted an anonymous electronic survey between January 2021 and July 2022 distributed through PCOS-related websites and registries within Alberta. The questionnaire included demographic, details of PCOS diagnosis, follow-up care and overall health care history and concerns and was pilot-tested by PCOS patient-partners (n=5) and health care professionals (n=5). Descriptive statistics was applied and open questions were analyzed qualitatively.

Results: Responses from 195 women living in Canada (92% in Alberta) were included. The average age was 33.9±8.3; average BMI was 34.9±9.4 with 79% of respondents being overweight or obese. Menstrual irregularity was among the first noticed symptom (84%) and the primary reason to seek medical help. The mean age of PCOS diagnosis was 23.8±6.4 years and was on average 4.2 years after first symptom awareness with 57% of respondents stating they were seeing more than one family doctor or health professional before the diagnosis was made. More than half (53%) reported not receiving a referral to other specialists for follow-up care. Those receiving referrals mainly included gynecologists (21%), endocrinologists (11%) and dietician/nutritionists (10%). Respondents were not informed about potential long-term health complications associated with PCOS (70%) and were not given information or resources on lifestyle management (77%) at the time of diagnosis. Most women (81%) did their own research using internet searches, social media sources, books and academic literature, and advice from neuropaths, specialists and peer support groups. Open question themes for health care improvement included more resources and support (36%), increased information (32%), better education and training for clinicians (26%), prompt referrals to specialists (19%), and more compassion and empathy towards symptom complaints and challenges in lifestyle management (17%).

Conclusion: Our findings highlight the challenges in health care for women with PCOS. In Canada, and especially in Alberta, timely diagnosis, continuous support and multidisciplinary care are currently not adequately provided. We aim to translate these findings to improve the health care and experience of women with PCOS in the health care system.