Abstract
Objective To examine gaps in the care of people with polycystic ovary syndrome (PCOS) in Canada from a patient perspective and identify opportunities for improvement.
Data sources PubMed, Embase, Web of Science, and Scopus databases.
Study selection Observational studies, randomized controlled trials, mixed-methods studies, cross-sectional studies, and qualitative studies were included that examined the experiences of patients with PCOS in Canada.
Synthesis Screening of titles and abstracts was performed independently by 2 reviewers, with conflicts resolved by a third blinded reviewer. Full-text screening was completed by 4 reviewers. A total of 2098 citations were identified using a broad search strategy and 9 studies met inclusion criteria. Information on the care experience of patients with PCOS was extracted and synthesized using a Knowledge-to-Action framework. Three main themes emerged: 1) there is opportunity to address delays in PCOS diagnosis and provide clearer treatment recommendations to patients; 2) there is a need to address the psychological impacts of PCOS; and 3) there may be opportunities to improve the clinical care experiences of people with PCOS.
Conclusion The authors propose that expedited diagnosis of PCOS, attending to patients’ mental health needs, personalized lifestyle modifications and education, and strategies to promote positive patient experiences may help to improve PCOS care.
Polycystic ovary syndrome (PCOS) is the most common endocrine disorder, impacting 3% to 10% of the global population, including 1.4 million Canadians.1-3 PCOS is characterized by hyperandrogenism, ovarian dysfunction, or polycystic ovarian morphology, and can lead to oligomenorrhea, skin disorders, excessive hair growth, and subfertility.4-7 Individuals with PCOS are also at higher risk of mental health conditions and metabolic disease, including obesity and type 2 diabetes mellitus.4,8 The pathogenesis of PCOS is multifactorial: environmental, dietary, metabolic, and genetic factors all contribute to its development.9
Due to its heterogeneous clinical presentation and the existence of several diagnostic criteria for PCOS (Appendix Table 1, available from CFPlus*), research studies on PCOS have been limited, and clinical practice guideline recommendations can vary.9,10 This can lead to health care gaps, particularly for patients living with the disease. The aim of this review was to explore patient-identified care gaps in their PCOS journeys, with the hopes of identifying areas to target for clinical improvement. Understanding patients’ care perspectives is crucial to the provision of patient-centred care and improving their satisfaction and outcomes. It is also a cornerstone of patient-oriented research.11-13
METHODS
Data sources
Study eligibility. Study eligibility criteria are included in Box 1. We focused on Canadian studies, given patients from publicly funded, provincially administered health care systems may have unique care patterns and experiences.
Inclusion and exclusion criteria
Inclusion
Publication in English
Peer reviewed
Full text accessible
Published between January 1, 2000, and November 1, 2023
Article is a case study, case report, randomized controlled trial, qualitative study, mixed-method study, or cross-sectional study
Addressed PCOS care from a patient perspective
Included Canadian patients with PCOS or suspected PCOS
Exclusion
Reviews
Drug trials and molecular studies
Exclusively non-Canadian patients
PCOS—polycystic ovary syndrome.
Identification of studies. A literature search across Embase, Scopus, Web of Science, and PubMed was conducted to identify relevant citations. We used very broad search criteria with the following Medical Subject Headings terms and Boolean logic: (“PCOS” OR “Polycystic Ovar* Syndrome”) and (Canad*). Limits were applied to narrow the search from January 1, 2000, to November 1, 2023. Two of the project reviewers (J.B., L.M., H.P., or A.P.) screened titles and abstracts of all identified citations. Citations that appeared eligible were selected for full-text review. Full texts were then independently assessed by 2 reviewers (L.M. and A.P.). Discrepancies were resolved by a third reviewer (H.P.). Three appraisal tools were used to assess the quality of included studies depending on the study methodology.14-16 Once the final sample of articles was established, 4 reviewers assisted with data abstraction.
SYNTHESIS
Our initial search yielded 2981 citations (Figure 1). After duplicate citations were removed, 2098 articles underwent title and abstract screening. Ninety-one studies were selected for full-text review. Following full-text review, 9 articles met eligibility. The details of all included articles are provided in Table 1.14-25
Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow chart in the investigation for literature on polycystic ovary syndrome in Canada
Critical appraisal of included studies: N=9.
The sample sizes of included articles ranged from 10 to 296 participants. Five studies were national in breadth.17-21,24 Province-level studies were conducted in Ontario (n=3)22,23 and Saskatchewan (n=1).25 Our quality assessment for each study is provided in Table 1 (most articles were of good quality).14-25
On review of the included articles, the authors brought forward key themes identified by at least 2 of the included works. The authors then met to review all themes and the Knowledge-to-Action framework (framework to move knowledge into clinical practice) was used to finalize the themes presented.26,27
Main themes identified in this systematic review are presented in Tables 2 and 3.17-25 Included articles suggested 1) there are opportunities to reduce delays in diagnosis and provide clearer treatment recommendations to patients with PCOS17,19,20,22,23; 2) the psychological impacts of PCOS could be better addressed17,18,21,24,25; and 3) there are opportunities to improve the care experiences of people with PCOS within the health care setting.17-20,22,23,25
Canadian literature regarding care management for patients with polycystic ovary syndrome and their respective findings: N=9.
Thematic contribution of literature: N=9.
Theme 1: diagnostic delays and clearer treatment recommendations
Delays in diagnosis. Three studies noted gaps in PCOS diagnosis. Some patients reported seeing 3 or more physicians for their symptoms and waiting up to 4.3 years from symptom onset to the diagnosis of PCOS.17,19 Delayed diagnosis of PCOS was reported to hinder preventive action and treatment of comorbid diseases.17 The included literature suggested that diagnostic delays could be related to insufficient knowledge of PCOS and its diagnosis, as well as the multiple diagnostic criteria available (eg, Rotterdam criteria, Appendix Table 1, available from CFPlus*).17,19,20,23
Clearer provision of treatment recommendations. One Ontario study reported that nearly all participants (n=65) were prescribed oral contraceptive pills (OCPs) when first diagnosed with PCOS but felt poorly educated on the use of OCP therapy.23 Participants also noted gaps in weight loss advice; clinicians often encouraged patients to lose weight but provided limited guidance and resources to assist them with healthy weight loss. This led to frustration and scepticism about the effectiveness of lifestyle management for the treatment of PCOS.20,22
Theme 2: psychological impacts of PCOS
Mental health, body image, and self-worth. A large Canadian study of participants with PCOS (n=194) revealed that more than 35% of participants had mental health concerns.17 Over half of these participants wished for mental health support, but only 1% were referred to a mental health professional.17 Other studies noted the impact of PCOS on body image and self-worth. One study conducted structured interviews with 10 Canadian women and participants noted feeling “weird” or “abnormal” due to societal pressures, gender stereotypes, and beauty norms. Their PCOS symptoms (eg, hirsutism) did not fit within these beauty standards.24 In a study where participants depicted PCOS through drawings and interviews, feelings of having misshapen bodies and failing ovaries emerged.21 Another study reported feelings of stigma and shame surrounding PCOS and its associated symptoms.18 Weight gain and excess hair growth contradict societal ideas of femininity and beauty and make aspects of the condition difficult to share with others.18
Helpful mental health supports. In a clinical research study of women with PCOS, women received counselling and education as part of an ultrasound study on PCOS. Participants had improvement in health care satisfaction and psychological well-being upon completion of the study.25 A qualitative study involving semistructured telephone interviews of women with PCOS indicated that age-specific support groups and counselling could be helpful to patients living with the disease.18
Theme 3: patient experience with the health care system
Need for more support. People with PCOS wished for more support from their family physicians (FPs) and other primary care clinicians (PCCs).18,20,22,23,25 A high proportion (59.5% to 65.9%) felt the need for more education on PCOS treatments, side effects, complications, comorbidities, and managing their condition.17,20,22 The potential for infertility was expressed as a concern by participants in another study—some felt inadequately informed about PCOS-related fertility issues.19 Many participants felt ill-equipped to navigate medical information independently online.17,20
Challenging interactions. Some patients perceived a lack of empathy from their FP or PCC.20,22,23,25 They described feeling disheartened and unsupported; some felt talked over and, in some cases, felt their symptoms were disregarded. This resulted in reluctance to seek health care.20 Some noted a lack of trust in their FP or PCC.17,18,20,23 In some studies, people with PCOS noted that FPs or PCCs seemed hesitant to refer them to specialists,18-20,23,25 and patients believed this could lead to delays in management.19,23 People who were overweight or had obesity reported feeling alienated and in some cases, biased against.23
Need for more awareness of PCOS and women’s health conditions (FPs, PCCs, and society). Participants highlighted the systemic under-prioritization of women’s health, particularly in relation to PCOS.19,25 Some believed there was a lack of familiarity with women’s health issues, leading to perceived lack of empathy, compassion, and delays in diagnosis.23 Women with PCOS reported the need to self-educate and self-advocate.19 From a societal level, it was noted that increased awareness of PCOS in the general community may help other women recognize symptoms of PCOS and seek timely care.18,22
DISCUSSION
This systematic review of the Canadian literature highlights patients’ perspectives on their care experiences with PCOS. Some of the themes identified mirrored findings from other countries; for example, diagnostic delays.28,29 The Rotterdam criteria are most frequently used for the diagnosis of PCOS; however, Dokras et al point out that provider knowledge of specific criteria varies.10 Groups like the Androgen Excess & PCOS Society have developed guidelines to attempt to harmonize gaps in diagnosis.30 It may be that gaining more insights from FPs and PCCs on the challenges of diagnosing and treating PCOS may help improve diagnostic efficiency and timely management.
Another common theme across the literature is the impact of PCOS on appearance, body image, and emotional distress.18,20,22,24 While providers appear to mostly focus on initiating OCPs and trying to help patients manage weight, people with PCOS might have other priorities. Infertility, for example, has been described as a major concern for participants across included studies.19,24 Clinicians might let patient symptoms and concerns drive management recommendations (ie, “What are you most concerned about?”), and counsel them accurately and appropriately. For example, while people with PCOS may have oligomenorrhea, fertility is variable—many people with PCOS can still become pregnant.31
Patients with PCOS also believed there could be more attention paid to their mental health.17,20 There was a suggested need for improvement in screening8,22; in mobilizing educational resources to enhance patients’ understanding of PCOS25; and in reducing the stigma surrounding PCOS.19 Given patients find self-education helpful, FPs and PCCs could direct patients to evidence-based resources, which can help increase patients’ health care satisfaction and knowledge of PCOS.20,25 We did note that patients were appreciative when their providers were also honest with them about their level of expertise with PCOS and felt valued when FPs or PCCs explored literature on their behalf for answers.20 Table 4 provides additional care recommendations that might be helpful to providers who treat people with PCOS.
Key recommendations to family physicians and other primary care clinicians based on patient perspectives in polycystic ovary syndrome care
Strengths and limitations
Our review has several strengths, including use of broad search criteria for our literature review, and the synthesis of our learning into themes focused upon the Knowledge-to-Action Framework. Its unique focus on Canadian research makes it particularly relevant to our local FPs or PCCs and health systems. Our review is also crafted around the patient experience, which is essential to the provision of patient-centred care. Our review is limited by the number of studies we identified and their sample sizes; 7 of the 9 studies included a population of fewer than 100 participants.18,19,21-25 We do also note that articles lacked gender-based considerations. Understanding the intersection of gender identity and sexuality with PCOS is crucial as it affects sociosexual behaviour, sexual activity patterns, and sexual attraction.32 One study examined qualitative interviews of 10 nonbinary and transgender patients with PCOS and indicated their attitudes toward the condition may differ from those of cisgender women.33 Notably, this study was conducted by Canadian researchers, yet their study population included participants outside of Canada.33 The lack of studies examining gender-diverse populations with PCOS in Canada highlights a gap in understanding the experiences among this patient population. Efforts to include transgender patients in Canada in PCOS research are essential to examine their unique needs within the Canadian health care system.
It is also important to highlight that this review was focused on the perspectives of patients with PCOS. By design, it does not capture providers’ views, which are equally important to explore and understand. There can certainly be a perceived disconnect between patient and provider perspectives with care; for example, it may be that providers do recognize the importance of mental health in PCOS, but there is little time to discuss patients’ well-being during busy outpatient appointments.34 Similarly, providers may know the importance of providing clear guidance on how to lose weight, but there remains a dearth of evidence on weight loss drug efficacy in PCOS34 (eg, glucagon-like peptide-1 receptor agonists). Copp et al also highlighted a mismatch between patient and provider expectations regarding follow-up care, with some patients perceiving inconsistent care.35
Conclusion and future directions
Based on the included literature, patients with PCOS in Canada yearn for more education, mental health support, and patient-centred care. Future research could bridge patient and FP and PCC perspectives, including efforts to reconcile any mismatch between patient and FP and PCC expectations. Additionally, more inclusive and representative research is needed to ensure a comprehensive understanding of care management for patients with PCOS in Canada to inform better clinical practice.
Footnotes
↵* Appendix Table 1 is available from https://www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.
Contributors
Hayley Patrick, Liam McAlister, Ava Pourtousi, and Jasmine Badesha made equal contributions to the manuscript. All authors contributed to conceptualizing and designing the study; to collecting, analyzing, and interpreting the data; and to preparing the manuscript for submission.
Competing interests
Dr Kristin K. Clemens has received honoraria for delivering continuing medical education from the CPD Network and the Canadian Medical & Surgical Knowledge Translation Research Group. Dr Selina L. Liu has received funding for research from Eli Lilly, Novo Nordisk, Tandem, and Dexcom. There is no other financial support to disclose.
This article has been peer reviewed.
- Copyright © 2026 the College of Family Physicians of Canada
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