What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

Abstract

Background Polycystic ovary syndrome (PCOS) is a common and perplexing condition affecting metabolic, reproductive, cardiovascular, and psychological health in women. Previous studies point to widespread dissatisfaction and frustration in women with the information and care they receive. Studies have found delays with the diagnosis of PCOS and gaps in knowledge in physicians regarding the diagnosis and management of PCOS. Little has been heard from women on what they think can be improved with PCOS care, especially in Canada. This qualitative study explores women’s experiences navigating the healthcare system and their insights on what could be improved based on their lived experiences. Methods Twenty-five participants were interviewed remotely over the phone by the first author between October and December 2018.Interviews were semi-structured and in-depth. Data were analyzed using thematic analysis and interpretive description methodology. Results Twenty-five in-depth interviews conducted with participants across Canada (ages 18–63) revealed three overall areas in need of improvement. First, women emphasized a need for greater knowledge and awareness of PCOS in primary care physicians (PCPs) as well as the need for the medical community to prioritize women’s health. Second, participants advocated for greater PCOS awareness and de-stigmatization in the general community and in women and girls, and any individuals with female reproductive systems. Third, participants brought up several needed resources, such as the need for more PCOS research to be funded and undertaken, more PCOS specialists and experts to be available, credible doctor-provided information (e.g., pamphlets, websites), and age-specific support groups and mental health supports to be available. Participants were generally unaware of existing PCOS organizations and brought up the need for established PCOS organizations to aid in the training and retraining of doctors and local awareness-building in communities. Conclusions Participants believed that PCPs in Canada needed to be well-versed on how to diagnose and manage PCOS to prevent delays in diagnosis and provide easier access to care. Further, greater awareness and de-stigmatization in the general community are needed so women can identify symptoms early and have access to support from those around them. Overall, PCOS may be an overlooked and under-prioritized condition, both in the Canadian healthcare system and general community.

A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

“…There is a mixed experience with the diagnosis process. Research shows that education of healthcare professionals through increased training and engagement with current research improves PCOS management outcomes (56). This includes clinicians having greater experience within reproductive endocrinology and understanding both complex and standard presentations and management of PCOS.…”

The Role of the Primary Care Physician in the Assessment and Management of Polycystic Ovary Syndrome

“…2 PCOS requires a high level of health literacy to successfully self-manage and PCPs can play an important role in facilitating this. However, a key theme in diagnosis experiences of women and adolescents with PCOS has been the lack of provision of adequate information at the time of diagnosis 20 22 29 30 and negative interactions with health care practitioners, particularly with delivery of a diagnosis with low levels of empathy. 19 Women want information on the cause and complications of PCOS, 30 medical therapy options, and provision of emotional support and counseling.…”

“…20 On the other hand, some women described positive experiences with diagnosis which were characterized by being taken seriously and being listened to 22 by a proactive, empathetic, and knowledgeable PCP. 29 Women specifically wanted credible information to be provided by their doctors and age-specific support. 29 When health care practitioners took the time to obtain more information to assist patients at diagnosis, this was perceived positively.…”

Polycystic Ovarian Syndrome: Prevalence, Predisposing Factors, and Awareness Among Adolescent and Young Girls of South India

“…A timely diagnosis of PCOS in symptomatic adolescent girls is important for the initiation of appropriate treatment and management initiatives. However, this can be achieved by spreading awareness through educational interventions and other measures such as educating the susceptible population regarding the symptoms, etiology, age of onset, and PCOS-related health care services [14].…”

“…Such patients fail to conceive and present themselves at fertility clinics. Therefore, it is increasingly important to improve awareness among females at an early age, which potentially contributes to early diagnosis and prevents late sequelae of PCOS [14].…”