Polycystic ovary syndrome (PCOS) is one of the most common endocrinopathies among women of reproductive age, with a prevalence of 8%–13%, depending on the phenotype and the diagnostic criteria used (1). The diagnostic features of the disease are clinical and/or biochemical hyperandrogenism, oligo/anovulation, and a polycystic morphologic appearance of the ovaries (2, 3). PCOS was originally perceived as a reproductive disorder. However, mounting evidence suggests that PCOS is also a metabolic condition associated with overweight/obesity (4, 5), type 2 diabetes mellitus (T2DM) (6, 7), fatty liver disease (8–10), and cardiovascular disease (CVD) (11, 12). It also has a significant psychological burden that is more than just a consequence of the physical symptoms of PCOS (13–16). Kempegowda et al. proposed an ‘iceberg phenomenon’ to highlight the neglected and overlooked impact on various aspects of women’s and individuals; with PCOS, alongside potential reproductive dysfunction ( Figure 1 ) (17).

Several studies have shown that women and individuals with PCOS often have a significant delay in diagnosis and are dissatisfied with their diagnostic experience, information provision, and the management of their PCOS (18–21). Qualitative research has shown that women and individuals with PCOS often felt they were not taken seriously by their doctors (22) and that care fell short of their expectations due to limited evidence-based treatment options (23). The International PCOS Guideline (24) recommends patient-centric models of care (MoC) that meet the needs of women and individuals with PCOS across the complexity of clinical features.

An MoC is generally conceptualized as an overarching provision of care that is codesigned with end-users, may be shaped by a theoretical basis, and aligns with evidence-based practice and defined standards (25, 26). A holistic, best-practice PCOS MoC would entail access to primary care, endocrinologists, gynecologists, dermatologists, dieticians, and psychologists as required to educate women and individuals with PCOS about their condition and its long-term consequences, address cardiometabolic, reproductive, and dermatological issues, and provide lifestyle interventions and psychological and emotional support ( Figure 2 ) (24). In the US and Australia, some MoCs have been implemented in accordance with the international guidelines. The involvement of a psychologist and cognitive-behavioral therapy in PCOS resulted in greater weight loss, improved quality of life, and reduced depression and anxiety (27). However, there is no literature comparing findings across MoCs to advance best practices that can be shared and adopted in other places where women and individuals with PCOS are managed. Furthermore, it is also important to consider the settings for the MoCs, as they can be significantly different in low- and middle-income countries (LMICs) due to resource and healthcare system constraints.

The aim of the study was to describe the characteristics of available MoCs for PCOS, their alignment with international guidelines, and their evaluation of outcomes.

A total of 3,671 articles were identified through title and abstract screening. Of these, 51 articles underwent full-text screening, of which six articles describing five MoCs are included in this report ( Figure 3 ). Bekx, Connor, and Allen (30) and Geier, Bekx, and Connor (31) (MoC A) described an adolescent PCOS clinic at the American Family Children’s Hospital, United States; Boyle et al. (32) (MoC B) described a pilot clinic on Thursday Island, Australia; Torres-Zegarra et al. (33) (MoC C) described a multidisciplinary clinic for PCOS at Children’s Hospital Colorado, United States; Tay et al. (34) (MoC D) described the Monash Health state-wide integrated PCOS service, Australia; Patil et al. (35) (MoC E) described an integrated multidisciplinary clinic at the Indian Council of Medical Research, India. Two were mixed-methods studies, and the others were cross-sectional. The objectives of the six articles varied. MoC A, Bekx et al. (30) characterized patients referred to their multidisciplinary clinic, while Geier et al. (31) aimed to examine the impact of MoC A on weight among adolescents with PCOS. Boyle et al. (32) evaluated MoC B based on its fidelity to evidence-based guidelines, barriers, and enablers for women and individuals using their service, and MoC’s ability to meet the needs of women and individuals with PCOS. Torres-Zegarra et al. (33) described the characteristics of patients and patterns of MoC C. Tay et al. (34) evaluated MoC D based on a comprehensive evaluation framework described by Markiewicz and Patrick (39). MoC E described the process of the models of care, including retrospective chart analysis of profiles of women attending the clinic (35). A summary of these MoCs is included in Table 1 .

MoC evaluation data were organized into three categories: patient outcomes, health professional outcomes, and other outcomes. MoCs B (32) and MoC D (34) were the only studies that reported their MoCs evaluation. MoC B evaluated outcomes from all three categories while MoC D only evaluated patient and other outcomes. Evaluation of patient outcomes was available for MoC A which investigated the impact of their service on BMI. No evaluation outcomes were available for MoC C.

To date, little progress has been made towards establishing evidence-based PCOS MoCs. Existing MoCs vary considerably in the breadth of multidisciplinary features, with few covering all recommended aspects of care (cardiology, reproduction, dermatology, emotional well-being, lifestyle, and long-term risk). Moreover, it is important to note that some of these studies were not designed to evaluate their MoC, which accounted for the lack of details in each reported MoC. Lack of progress could be because models exist but are not published, health system constraints hinder development (funding, health policy), or there is a lack of know-how about development. Good MoCs for PCOS may exist; however, without their publication, the opportunity to share best practices is lost. We also noted the lack of systematic reporting and evaluation of MoCs in PCOS, and here we have established a structure for capturing and reporting MoC characteristics to support future work. Future research should concentrate on the evaluation of routine MoCs with a focus on patients’ experiences and satisfaction. This would enable the sharing of best practices in the care of women and individuals with PCOS.

The lack of progress in PCOS MoC evaluation in the literature is surprising considering the high prevalence of PCOS as a chronic condition. A systematic review of chronic disease MoCs reported that >90% of their included MoCs (n = 75/77) reported a positive impact on healthcare practices and outcomes (40). A recent systematic review of models of care in primary care for chronic diseases showed improved outcomes for physiological measures of disease, risk behavior, quality of life, health status, patient satisfaction, functional status, and knowledge levels with a model of care (41). Interestingly, the number of studies included was substantially higher in this review in 2014 compared to their previous study in 2006. This shows a growing interest in models of care, especially for complex chronic conditions. However, this is not seen in our review of MoCs in PCOS (in both developed and LMICs). There is a need for and an apparent benefit from multidisciplinary, dedicated one-stop clinics covering all aspects of PCOS, such as the MoCs by Tay et al. (2021) (34) and Torres-Zegarra et al. (2021) (33). This is also in line with the study by Ismayilova and Yaya (2022), where people expressed the need for more PCOS-centric clinics (20). As the management of PCOS is largely individualized due to heterogeneity and a broad range of clinical features, having access to multiple disciplines is important (24). However, our results show that the integration of different disciplines varied considerably, yet four out of the five MoCs showed positive patient and/or healthcare professionals’ satisfaction.

Our systematic review showed that none of the peer-reviewed MoCs is optimized in line with our suggested MoC structure for women and individuals with PCOS. Despite having all the services for women and individuals with PCOS described by Tay et al. (2021) (34), Torres-Zegarra et al. (2021) (33), and Patil et al. (2022) (35), there is currently little evidence of stakeholders’ satisfaction with their MoCs. To ensure the optimization and sustainability of dedicated MoCs, careful design of components of care is important, including a plan for continuous evaluation and monitoring (42). Financial and human resources also play a role in designing such MoCs. Despite the high prevalence and long-term consequences of PCOS, as well as the estimated financial impact of $4.36 billion (43), PCOS receives less than 0.01% of national funding in the US (44). There is a clear need for greater awareness and priority for this condition. This also impacts access to treatment options for PCOS-related symptoms, such as expensive laser hair removal and electrolysis for hirsutism (24, 43, 45). Adequate dermatology management should be provided, as hormonal manipulation with contraceptive pills is not always effective and acne can cause significant mental health issues. Women and individuals with PCOS should be educated about subfertility due to anovulation and, more importantly, referred to a fertility specialist when indicated. As PCOS is also recognized as a metabolic condition, women and individuals with PCOS should be regularly screened for cardiovascular risks and informed of its long-term consequences. Because PCOS is also associated with endometrial cancer, education and public awareness regarding weight loss and progesterone use to reduce endometrial cancer risk are of paramount importance. Emotional well-being screening and appropriate referral are also important for women and individuals with PCOS due to the high prevalence of anxiety, depression, and reduced quality of life that go beyond the physical manifestations of PCOS. All of these would improve self-management strategies for women and individuals with PCOS when coupled with lifestyle interventions that can be provided by healthcare professionals, namely nutritionists, exercise physiologists, and lifestyle coaches. Moreover, it is important to ensure race, culture, and tradition are also factored in when designing an MoC, as these have been shown to influence the differential services received by women and individuals with PCOS (46–50). Other factors that need to be considered include distance to the health facility, affordability that could impact continuity of care, availability of essential treatments, diagnostic tools, trained staff, and coordination of care across public, private, and alternative healthcare providers. These are especially important in LMICs, as shown by the qualitative synthesis from a best-framework synthesis on models of care in LMICs by Lall et al. (51). Moreover, it is also important to consider PCOS MoCs at different life stages, considering the difficulty of diagnosing PCOS in adolescents. These make it vital to involve women, individuals with PCOS, and their families in co-designing services (49).

Many studies have shown that women and individuals with PCOS are generally dissatisfied with their diagnosis experience, the information provided, and the management of their PCOS (18, 19, 21, 22, 52). Patient satisfaction is also an important aspect of healthcare, as it has been shown to affect clinical outcomes and patient retention. Furthermore, patient satisfaction also affects the time and efficacy of healthcare delivery, which is often used as a proxy for the quality of healthcare (53). In addition, healthcare professional satisfaction is key to ensuring the productivity and sustainability of the service (54). In this context, surprisingly few studies focused on PCOS MoC, and most studies did not assess patients’ and healthcare professionals’ satisfaction. We have described satisfaction assessments for two MoCs (32, 34) with positive results. Our findings are like those of two studies describing an MoC based at the Royal Berkshire Hospital, UK, which were not included in this systematic review due to being published as conference abstracts without details of evaluation methodologies (55). An audit was conducted on their MoC to assess the adequacy of investigations and the efficacy of treatment for women and individuals with PCOS attending multidisciplinary clinics. Their patient satisfaction survey showed that 62 out of 63 women found the clinic useful and were happy with the results. They also reported high satisfaction and improved clinical outcomes such as weight loss, menstruation patterns, hirsutism, and physical activity levels (55, 56). A further seven studies that might include PCOS MoC were also excluded from this systematic review because they were abstracts. Hebbar et al. investigated the prevalence of anxiety and body dysmorphia in women and individuals with PCOS attending PCOS specialist clinics in the UK and India (57). The components of their MoC were not described in the abstract (57). Abudu et al. also studied the patient characteristics and subjective improvements in acne for women and individuals attending multidisciplinary PCOS clinics without a description of specialists in the multidisciplinary team (58). Other studies excluded three studies that described either group counseling, self-management, and/or support services for women and individuals with PCOS (59–61).

There are a limited number of models of multidisciplinary care currently available for PCOS, with a scarcity of data, especially in low- and middle-income countries. Good MoCs may exist, but without their publications, the opportunities to share best practices are lost. Studies on MoC that evaluated patients’ and healthcare professionals’ satisfaction were generally positive. Future work focusing on MoC scale-up should include the development of a best-practice MoC framework, co-designed with women and individuals affected by PCOS across different countries. Alignment with the updated best practice in the 2023 guideline will be important, along with adaptation to the range of health systems and resource settings, and a need for ongoing evaluation and sharing of results to further develop evidence based on real-world experiences.

The original contributions presented in the study are included in the article Supplementary Material . Further inquiries can be directed to the corresponding author.

Both EM and MD were involved in all stages of the study and have contributed equally to this work and share the first authorship. KM contributed to the design of the study and data analysis. CT, JB, and MT supervised the data extraction and finalizing of the articles included in the study. Members of the PCOS SEva working group provided substantial contributions to the conception and design of the work and were involved in discussions at all stages of the study. AM and HT were involved in scoping the clinical question and eligibility criteria (PICO), overseeing the review methodology in alignment with approved PCOS guideline evidence synthesis processes, and reviewing and editing the manuscript. PK conceptualized the study and supervised all stages of data collection, analysis, interpretation, and write-up of this study. All authors contributed to the article and approved the submitted version.