Providing lifestyle advice to women with PCOS: an overview of practical issues affecting success

There are a number of potential physiological reasons unique to women with PCOS that may explain difficulties with weight management. Insulin resistance and hyperinsulinaemia may predispose women with PCOS to gain weight, supported by insulin therapy-inducing weight gain [17] through anabolic effects of insulin and changes in energy expenditure, glycosuria, and food intake [18‐23]. Androgen excess may favour abdominal fat deposition [24], which could additionally contribute to insulin resistance in PCOS.

There may also be abnormalities in energy homeostasis in women with PCOS. The limited literature in this area has reported decreases in basal metabolic rate [25] or postprandial thermogenesis [26] for women with PCOS compared to those without, although this is not consistently found [26‐29]. The respiratory exchange ratio or respiratory quotient (RQ) refers to substrate oxidation or the carbohydrate-to-fat oxidation ratio [30], with a higher RQ (indicative of reduced fat oxidation) previously associated with weight gain [31, 32] in the general population. Women with PCOS have been reported to have higher RQ [33] compared to women without PCOS. Metabolic flexibility refers to the metabolic capacity to switch from lipid oxidation in fasting conditions to lipid availability in non-fasting conditions and is assessed by comparing RQ in the fasting state and an insulin rich state. A systematic review of five studies reported higher metabolic inflexibility in women with PCOS compared to controls and similar metabolic inflexibility compared to women with type 2 diabetes or obesity [34]. Further, these alterations in energy expenditure or metabolic inflexibility have been associated with insulin resistance [25, 26, 34] and hyperandrogenism [34].

Appetite regulation has also been reported to be impaired in women with PCOS, with alterations in hunger and gut hormones. A systematic review of 20 studies involving 894 women with and 574 women without PCOS reported lower ghrelin in PCOS (standardised mean difference -0.40; 95 % confidence interval -0.73, -0.08) [35], related to factors including insulin resistance. There is evidence that suggests intra-adipose androgen excess plays a role in the cycle of insulin resistance and weight gain [36]. Postprandial cholecystokinin has also been reported to be reduced [37] and fasting or postprandial glucagon-like peptide-1 (GLP-1) increased [38] or decreased [39] in women with PCOS. Further, women with PCOS have been reported to be less satiated and more hungry after eating compared to women without PCOS [40] and have a higher energy intake and earlier return of hunger [41]. However, the literature again is inconsistent, with other studies reporting no differences in gut hormones or appetite in women with and without PCOS [38, 42‐44]. Of note, there is also research reporting that there may be additional mechanisms contributing to increased adiposity in PCOS, such as altered regulation of appetite regulatory brain regions occurring in conjunction with insulin resistance [45]. There is therefore an emerging, albeit inconsistent, body of research suggesting mechanisms for why obesity and weight gain may be increased in this population.

Women with PCOS are reported to have a higher prevalence of both disordered eating behaviours [46‐48] and eating disorders [49, 50] compared to women without PCOS in the majority of, but not all, prior literature [51‐54]. In the limited research to date, studies use a variety of screening tools [e.g. Eating Attitudes Test-26 [47], the Mini International Neuropsychiatric Interview (MINI) [55] and the Eating Disorder Examination Questionnaire (EDE-Q) [56], with each having a different screening criterion. This lack of uniformity in assessments contributes to the reason as to why further clarification is required to better understand whether disordered eating or eating disorders are more prevalent in women with PCOS compared to those without the condition. Furthermore there is a lack of understanding as to why women with PCOS may experience greater rates of disordered eating behaviours and eating disorders compared to women without PCOS. A recent Australian study explored the cross-sectional relationship between disordered eating or eating disorders and a range of demographic risk factors (PCOS diagnosis, body mass index [BMI], age, country of birth). Authors reported that disordered eating, but not eating disorders, were more prevalent in women with PCOS when compared with controls [57]. Of the disorders, binge-eating disorder (BED) was the most commonly reported but not significantly different to controls. BED is the most common form of eating disorders within the general population and may explain the frequency and lack of significance between the two groups [58]. The cross-sectional study also reported higher BMI and older age increased the odds of disordered eating whilst increased BMI and younger age increased the odds of an eating disorder [57]. It is important to highlight that the controls were psychology university students and may not be a true representation of the general population. A meta-analysis also reported that women with PCOS are at 3.05 greater odds of being diagnosed with an eating disorder compared with women without PCOS, but was unable to distinguish the specific subtypes of eating disorders diagnosed due to a lack in power. More rigorous studies investigating the prevalence and presentation of disordered eating and eating disorders in women with PCOS are needed to better inform screening and management.

Fatigue has been reported by women with PCOS as a barrier to adopting lifestyle changes [14], which may be due to physiological or psychological origins. Women with PCOS are more likely to report fatigue than women without PCOS [59]. Fatigue is intrinsically linked with sleep, and women with PCOS have a higher prevalence of poor sleep quality and sleep disorders compared to women without [60‐62]. In particular, it is estimated that up to 35 % of women with PCOS may have obstructive sleep apnoea (OSA) [62], compared to 9-38 % in the general population [63]. Women who are obese and of older age are more at risk of developing OSA [62]. Sleep disturbances in women with PCOS may also occur independently of OSA [64, 65] and may be related to psychological distress and upregulation of the hypothalamic-pituitary axis, and/or increased sympathetic outflow due to insulin resistance [66] although exact mechanisms are still unclear.

Fatigue and sleep disturbances may also indicate depression, and are the most commonly reported depressive symptoms in women with PCOS [59]. The prevalence of depression and depressive symptoms is higher in PCOS [67] and PCOS is also associated with more severe symptoms of depression [68]. A recent meta-analysis of 57 studies reporting on 172,040 women reported that women with PCOS were at 2.79 greater odds for being clinically diagnosed with depression when compared to controls [68]. Another meta-analysis estimated a prevalence of 36 % for depression in PCOS [69]. The risk of developing depression may be associated with higher BMI [70], although this association is weak. The development of depression and depressive symptoms may also be related to the presence of hyperandrogenism, hyperinsulinemia and elevated levels of inflammation in PCOS [71].

Women with PCOS are more likely to report a lack of confidence about maintaining physical activity [72] which may be related to negative body image, and feelings of shame and worthlessness [73]. While body image distress is not limited to women with PCOS [74], there is a high prevalence of body image distress among women with PCOS and it has been suggested that this might mediate the development of depression and anxiety [75]. Research suggests that women with PCOS experience feelings of being inferior and abnormal compared with women without PCOS [76] and this may lead to beliefs that they are unable to participate in physical activity [73]. All of these factors may contribute to difficulties initiating and maintaining lifestyle changes.

Self-management is a continuous process of self-directed behaviour change known to improve one’s personal emotional, behavioural and medical management, aiming to avoid disease-related complications, regulate symptoms and reduce the severity of disease [77‐79]. These actions may take form as cognitive (e.g. problem solving, decision making) and/or behavioural strategies (e.g. forming relationships with health practitioners and having healthy foods easily available) to meet one’s own health needs [79, 80]. All of these core self-management behaviours are heavily influenced by one’s knowledge [81] and self-efficacy [82] and must be targeted in order to prevent or manage chronic disease. Effective self-management strategies in the general population include the independent monitoring of symptoms, development of personalised action plans upon worsening of symptoms, understanding and implementing psychological coping strategies to better manage stress, and enhancing personal responsibility in daily lifestyle choices and medication adherence [83]. Unfortunately, the use of self-management strategies and their impact on nutrition and physical activity are yet to be investigated in women with PCOS.

Health literacy provides a comprehensive lens on self-management among women with PCOS. Health literacy is an important determinant of health equity and comprises a multi-dimensional concept described by the World Health Organisation as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” [84]. Research in the general population found that health literacy is associated with health behaviours and health outcomes including hospitalisation rates, overall health status, obesity, dietary intake, and physical activity [85‐88]. As PCOS is a complex disorder with variable and wide-ranging symptoms, its self-management is likely to also be complex requiring high levels functional, interactive, and critical health literacy. However, there has been very limited research on health literacy in women with PCOS, as discussed below [89, 90].

There are three main categories of health literacy: functional, interactive and critical health literacy [91]. While evidence presented here are on the individual types of health literacy, dynamic interactions exist between the different types of health literacies. For example, poor knowledge on PCOS (functional health literacy) could limit meaningful engagement with health professionals (interactive health literacy); on the other hand, poor engagement of allied health professionals (interactive health literacy) limit opportunities to obtain the appropriate knowledge and skills in lifestyle management (functional health literacy).

Risk perception is one’s subjective judgement about the likelihood that an adverse event will occur and the severity of consequences should it occur [109]. Risk perceptions are a precursor to health-related behaviours as they influence how one views disease and the protective actions they may or may not take to reduce risk [110, 111]. There is limited understanding regarding the health-related knowledge and beliefs of women with PCOS. Despite poorer overall health and greater health-related impediments in women with PCOS, the few studies published to date report conflicting findings regarding the health-related beliefs of women with PCOS compared with those without [112, 113]. For instance, some studies report that risk perceptions of future metabolic complications such as diabetes and cardiovascular disease (CVD) are suboptimal in women with PCOS [113], while others do not [114, 115]. A recent study of 475 women [116] reported that, compared with healthy controls, women with PCOS had a greater perceived risk for adverse health outcomes and weight gain, yet believed a healthy lifestyle was less beneficial for preventing weight gain.

Notwithstanding their own perceptions of risk, evidence suggests that PCOS is associated with greater risk of metabolic diseases such as type 2 diabetes in the long term [117, 118]. Moreover, despite their unique risk profiles, women with PCOS are often provided with general population government dietary recommendations that they perceive as inadequate and dismissive of their PCOS needs [115, 119, 120]. As a result, women with PCOS tend to be ambivalent about meeting these dietary recommendations, with only a few following them, even though they reported high confidence in being able to adopt the recommendations and being more concerned about developing adverse health outcomes compared to women without PCOS [116].

Women with PCOS also appear to lack intrinsic motivation to undertake lifestyle change, such as enjoyment of physical activity, instead viewing physical activity only as a means to weight loss. This is evidenced by previous research reporting that a major barrier to physical activity adoption among women with PCOS is the perceived barrier that exercise is tiring and hard work [121], and fear of injury [72].

When communicating to women with PCOS, it is important to be aware of these mechanisms as to best acknowledge the potential pathophysiology of challenges they may experience when trying to manage weight. Further research is needed both in women with PCOS and the general population on strategies to aid weight management through modulating energy expenditure or appetite regulation.

If fatigue, sleepiness and non-restorative sleep are identified, screening for OSA should be considered, followed by a referral to a sleep specialist if required. The tool recommended by international evidence-based guidelines on PCOS is the Berlin Questionnaire [135], although this has not been validated in PCOS. Fatigue and sleep disturbances may also be due to depression, and screening for depression should be conducted as required, per evidence-based guidelines (see Table 1). Fatigue and sleep disturbances may also be due to depression, and screening for depression should be conducted as required, per evidence-based guidelines (see Table 1). Women with sleep disturbances that are not due to OSA may still benefit from a sleep specialist referral, and sleep hygiene should be prescribed. Cognitive behavioural therapy may also be helpful [66].

Lifestyle recommendations may need to be sensitive to disordered eating or eating disorders so as to not perpetuate disordered eating psychopathologies [48]. Eating disorders are psychological disorders characterised by abnormal or disturbed eating behaviours with or without compensatory behaviours, as determined by the Diagnostic and Statistical Manual of Mental Disorders-5 [137]. Behaviours that classify an eating disorder may include food restriction, binge-eating, purging, laxative use, diet pills and excessive exercise. Disordered eating is a condition characterised by these same characteristics but are of a lesser frequency or a lower level of severity as that of an eating disorder [137]. One example in which lifestyle recommendations may be applied whilst not exacerbating disordered eating symptomologies is by incorporating a weight-neutral approach (e.g. intuitive eating, self-care activities) [57, 138], rather than the traditional, dietary restriction. A 2019 systematic review found weight-neutral programs reduced serum lipid measures and blood pressure comparable to weight loss interventions. In both weight-neutral and weight loss focus programs non-significant reductions in HbA1c were observed [139]. Further studies are needed to confirm the impact of weight-neutral programs in women with PCOS. Furthermore, understanding the demographic risk factors associated with these pathological eating behaviours may help clinicians identify women with PCOS most at risk of eating disorders or disordered eating. Until more research is available, clinicians are recommended to screen all women with PCOS for possible disordered eating behaviours, with particular attention to women with elevated BMI (see Table 1). Moreover, future research should incorporate interviews with a clinical psychologist to clinically diagnose disordered eating and eating disorders.

As lifestyle interventions and weight management are key recommendations for the management of PCOS, identifying the most effective and acceptable lifestyle-related self-management strategies in this population may help support them in achieving lifestyle change and meeting the nutrition and physical activity recommendations as outlined in the 2018 evidence-based clinical guidelines for optimal PCOS management [140]. This will also inform the tailoring of PCOS lifestyle interventions for subgroups such as by BMI, age or medical history.

Evidence-based guidelines recommend that all women with PCOS should be routinely screened for anxiety and depression symptoms at diagnosis and referred for psychological therapy if required. Initial screening questions and follow-up screening are provided in Table 1. Negative body image, which has been associated with poor sleep, can also be screened using a stepped approach, outlined in Table 1. Approaches to reduce body image distress include counselling based on acceptance and commitment therapy [141]. As with disordered eating and eating disorders, a weight-neutral approach is recommended for women with psychological co-morbidities.

Involving women with PCOS in the co-development of health interventions or decisions is key to addressing the gap in critical health literacy, as demonstrated in recent research [142]. Better partnership between health professionals and women with PCOS has been highlighted as one of the key tenets of PCOS management in the latest evidence-based guidelines [10]. Building capacity among health professionals to be better partners with women with PCOS is among the strategic activities in the translation of the guidelines.

Wider adoption of evidence-based tool such as the AskPCOS smartphone application could improve communication between women with PCOS and health professionals (thereby improving interactive health literacy), since it includes a question prompt list that enables women with PCOS to discuss targeted health concerns with their healthcare providers [143, 144]. Additionally, further strategies to support peer groups should be developed and sustained to improve interactive health literacy in women with PCOS.

Despite limited evidence, there is a clear need for increased education, awareness, and accuracy of risk perception among women with PCOS. Shared decision-making and an improved understanding of the features of risk (including individual responses to risk aversion, risk immediacy, perceived vulnerabilities, consequences and control) are important considerations for successfully implementing lifestyle change [148]. However, adequate risk perception is insufficient on its own, and must be coupled with appropriate tools and resources to enable individuals to take preventive action [109]. Focusing on the reported successes of weight loss interventions in women with PCOS and providing strong encouragement about health-related issues may represent important targets for health professionals when counselling women with PCOS about the benefits of lifestyle modification. Further effort is required to communicate risks of unhealthy lifestyles to women with PCOS. Consistent with this approach, lifestyle messages for women with PCOS should be tailored to reflect the unique risk profiles of PCOS in terms of cardiometabolic disease prevention.

Women should be encouraged to choose physical activities that they find enjoyable, rather than the ones they think they are expected to engage in (such as going to the gym). The use of mindfulness-based therapies is a potentially novel intervention that may help to enhance intrinsic motivation to exercise, and may have additional benefits for mental health [149].