Healthcare Delivery for Polycystic Ovary Syndrome in Canada: Exploring Women’s Experiences with Diagnosis and Management and Identifying Areas of Improvement

Abstract

Background: Polycystic ovary syndrome (PCOS) affects 6-10% of women and has a range of impacts on women’s reproductive, psychological, metabolic, and cardiovascular health. A lifelong condition, symptoms of PCOS may start in adolescence and extend into post-menopause. Despite being such a pervasive disorder, with significant burden of disease for some women, it may be underrecognized within the medical and general communities. Recent studies suggest that women with PCOS may not be diagnosed early or receive appropriate guidance and information from physicians. Little is known about women’s experiences in Canada. This thesis explores experiences with diagnosis and management in Canada and assesses the barriers and facilitators women face while seeking care for their condition.

Methods: Research questions were addressed using a multi-methods approach. Participants were recruited from online PCOS groups on Facebook, Reddit, and stand-alone PCOS forums. An online questionnaire measured participants’ time to diagnosis, number of doctors seen, and satisfaction with information provided. Descriptive statistics, Chi-square tests, Fisher’s exact tests, and Spearman’s rank correlations assessed characteristics of the sample and correlations between demographic factors and satisfaction measures. Twenty-five follow-up interviews were held over the phone to elicit greater richness of experiences. Qualitative data were analyzed using thematic analysis and the interpretive description framework.

Results: The e-survey was completed by 296 women aged 18-60 with a self-reported diagnosis of PCOS. Approximately a third (34%) of respondents waited for more than 2 years before attaining a diagnosis and 41% saw 3 or more doctors. Most participants were dissatisfied with the information provided to them about PCOS (66%). Many did not receive any information about lifestyle management (42%) or medical therapy (28%). Barriers to diagnosis and management included lack of knowledge and/or concern in physicians. Women received insufficient information about PCOS implications (including mental health) at the diagnosis and subsequent visits. Few participants had physicians who were involved with PCOS management. Peri- and post-menopausal women especially lacked support and medical information on how to manage symptoms. Facilitators to diagnosis and management included self-education, self-advocation, and social support. Women identified a need for greater PCOS awareness in primary care physicians and the general community. Few women had heard of PCOS prior to their diagnosis.

Conclusion: This thesis found delays to diagnoses and dissatisfaction in women around the care and information they received from doctors. Perceived lack of knowledge and engagement in physicians resulted in most barriers to diagnosis and management. Few participants had physicians whom they could rely upon for information and guidance. Greater awareness of PCOS is needed in the medical community, particularly in primary care. Women and girls may benefit from greater PCOS awareness early in life in health class at the elementary and/or secondary levels.