‘I'm usually being my own doctor’: women's experiences of managing polycystic ovary syndrome in Canada

Abstract

Background Polycystic ovary syndrome (PCOS) is a complex, chronic condition characterized by anovulation, polycystic ovarian morphology and hyperandrogenism that requires lifelong management. To reduce the risk of comorbidity and to manage symptoms, lifestyle management and pharmaceuticals such as oral contraceptives are the most common forms of treatment and should be tailored to the individual patient. The literature to date has shown PCOS patients to experience widespread dissatisfaction with the amount and quality of information they receive from providers, along with lower levels of trust in physicians. Little is known about the lived experiences of women managing PCOS in Canada, across age groups. Methods In-depth remote interviews explored women's lived experiences managing PCOS and the barriers and facilitators they encountered in their management journeys. Data were analyzed using thematic analysis and interpretive description methodology. Results Twenty-five in-depth, telephone interviews conducted with participants (aged 18–63 y) across Canada revealed participants lacking sufficient information and guidance from physicians, especially in primary care. Areas in need of more guidance included lifestyle management and mental health. Lack of empathy and weight bias among physicians were also perceived by participants. Older participants received little guidance on treatment options postmenopause. Loss of trust and withdrawal from seeking medical care were prominent themes, along with greater self-reliance on self-management, including self-educating and self-experimenting with treatments. Conclusions Most women in this study were frustrated with the level of involvement and information provision from their doctors. Key recommendations are identified for the provision of care to younger and older patients with PCOS. Improved education for physicians may be needed to improve the quality of healthcare provision for PCOS.

Challenges in diagnosis and health care in polycystic ovary syndrome in Canada: a patient view to improve health care

“…In addition, respondents reported the need to advocate for themselves and to request referrals to specialist care. These findings are consistent with another Canadian study which reported a reliance on self-education and self-advocacy by respondents in their PCOS management [ 48 ]. A study by Hoyos et al found that almost all (98%) of survey respondents searched for information about PCOS on the internet [ 28 ].…”

“…The delay in diagnosis may be attributable to insufficient medical training of physicians in women’s health issues related to menstruation and PCOS specifically, and a lack of referral to endocrine and women’s health specialists [ 33 , 47 ]. Our data is consistent with other reports of a protracted diagnosis of PCOS taking greater than two years, and associated with multiple visits to health professionals and examination by three or more physicians before a diagnosis [ 2 , 30 , 48 ]. It is not clear whether these diagnostic delays are associated with a lack of physician education and training about PCOS and diagnostic criteria.…”

“…In addition to a protracted diagnosis, over 70% of respondents reported a lack of information about PCOS at the time of diagnosis. This finding is consistent with other studies, using focus groups and surveys, that report information provided at diagnosis was not sufficient to allow for improved knowledge and effective self-management of PCOS symptoms [ 2 , 46 , 48 ]. Information and resources on basic anatomy of the reproductive system, PCOS symptoms, potential treatments for a range of symptoms and other health risks are important to provide at diagnosis to enable patients to self-manage and improve knowledge of their disease, as recommended in the international guidelines [ 3 ].…”

Bridging the Information Gap in Polycystic Ovary Syndrome: A Narrative Review with Systematic Approach

“…27 Furthermore, a lack of empathy and weight bias from health professionals seemed to enhance the feeling of stigmatization of patients in this study. 28 A recent study out of India looking at PCOS treatment seeking pathways in newly diagnosed patients observed that recurrent lack of clear treatment explanations led to 51% of patients consulting two to three healthcare agencies for treatment recommendations. 29 Even though similar treatment plans were provided at each consultation, a lack of insight into the PCOSspecific medical decision-making left patients unable to accept treatment recommendations.…”

Women's experience of polycystic ovary syndrome management: A systematic review and meta‐synthesis

“…A total of 13 studies 23,24,[29][30][31][32][33][34][35][36][37][38][39] were included in this systematic review, of which 11 were qualitative studies and two were mixed studies that reported the results of qualitative studies in detail. Of the 13 studies, four were from Australia, three were from the United States, two were from India, and the remaining four were from New England, the United Kingdom, Canada, and Iran.…”