Abstract
Keywords
Introduction
Polycystic ovary syndrome (PCOS) is the most common female endocrine disorder, affecting up to 20% of females worldwide.1,2 PCOS is diagnosed by the presence of two of three criteria: menstrual irregularities, hyperandrogenism, or polycystic ovaries on ultrasound. 1 If ultrasound is not available, serum anti-Mullerian hormone can be used as an alternative diagnostic option. 2 The condition is lifelong and multifaceted with reproductive, metabolic, and psychological presentations.2–4
PCOS is the most common cause of anovulatory infertility, presenting in approximately 75% of individuals with PCOS.5,6 Additionally, individuals with PCOS present with higher prevalence of cardiometabolic risk factors, including dyslipidemia,7–10 hypertension,10–12 chronic inflammation, impaired glucose tolerance,13,14 as well as overweight and obesity.15,16 While an association between body weight and PCOS has been noted, cardiometabolic risk factors are prevalent in individuals with PCOS across varying body weights.16,17 Thus, PCOS is a significant risk factor for cardiovascular disease and type 2 diabetes regardless of weight and body mass index (BMI). 16 The higher prevalence of cardiometabolic risk factors is compounded by poor psychological well-being in individuals with PCOS. 18 Anxiety, depression, and diminished quality of life have been reported in the population,19–21 along with a higher prevalence of eating disorders.22–29 A recent systematic review found individuals with PCOS had 53% higher odds of any eating disorder, 34% higher odds of bulimia nervosa; and double the odds of binge eating disorder compared to individuals without PCOS. 30 Unfortunately, other reviews have found similar findings.16,17,28,31,32
Lifestyle management is considered the first line of treatment for PCOS. 2 Many of the current recommendations for PCOS center around weight loss for individuals with overweight and obesity. 33 Yet, a distinct proportion (approximately 20%) of individuals with PCOS have a healthy body weight16,17,34 and are often not included in the research. Only individuals with PCOS with an overweight or obese phenotype are typically included as study participants in the research literature. 33 Additionally, the focus on weight loss may perpetuate the poor body image and disordered eating behaviors noted in the population.22–29 The 2023 International Evidence-Based Guidelines for the Assessment and Management of PCOS differ from previous guidelines by recognizing that lifestyle interventions can offer health benefits for individuals with PCOS, even in the absence of weight loss. 2
The sustainability of weight loss interventions has been questioned, as emerging research indicates that at least one third of dieters regain more weight than is lost during weight loss attempts.35,36 For example, a meta-analysis in the United States reported that participants in a structured weight loss program regained 77% of their initial weight loss after 5 years. 37 The phenomenon of weight cycling, or repeated weight loss and regain, is associated with poor cardiometabolic health.38,39 Weight cycling is also associated with lower psychological well-being,40,41 thus, potentially aggravating the comorbidities already commonly seen in PCOS. Moreover, individuals attempting to achieve and maintain weight loss are at a higher risk of eating disorders, including binge eating disorder and bulimia nervosa. 40 Furthermore, the act of dieting itself has also been associated with the onset of eating disorders.40,41
A review of dietary and lifestyle interventions to manage cardiometabolic risk in PCOS reported that weight loss interventions had high attrition rates, 33 suggesting they are not sustainable in the long term. Additionally, weight loss interventions with long-term follow-up (1 year) found that the initial benefits seen in cardiometabolic risk were not maintained during the follow-up period.33,42 Yet, interventions that focused on improvements in dietary patterns, rather than weight loss, reported similar benefits to cardiometabolic risk profiles. 33 Therefore, interventions that focus on dietary patterns, such as low glycemic index, high protein, and modified meal timings, should be explored.
Intuitive eating may be a suitable treatment approach for individuals with PCOS, as it is a weight-neutral, or non-weight-focused, intervention associated with improvements in cardiometabolic risk and psychological well-being. Intuitive eating is a weight-neutral, mind-body health approach originally developed in 1995 by two registered dietitians in their book,
Ten principles of intuitive eating. 44
Although a weight-neutral intervention, intuitive eating has been associated with improved cardiovascular risk factors, irrespective of weight loss in other female populations, including female chronic dieters with obesity, and premenopausal females with obesity and metabolic syndrome.45,46 While not a goal of intuitive eating, evidence supports that intuitive eating practices may aid in weight loss47–53 and weight maintenance.45,54–60 Additionally, intuitive eating is associated with greater psychological well-being.61,62 For instance, intuitive eating is negatively associated with anxiety and depressive symptoms. 62 Moreover, the approach is positively associated with body appreciation, self-compassion, and self-esteem, and inversely associated with disordered eating behaviors, including dietary restraint, emotional eating, binge-purge symptoms, and body image dissatisfaction.61,62 Intuitive eating, while being a weight-neutral, anti-diet approach, underscores the importance of nutrition and movement for well-being. Intuitive eating may be complementary to current recommendations for PCOS, yet differs in that weight is not the sole focus. Thus, intuitive eating may be a suitable intervention for the PCOS population, which presents with higher cardiometabolic risk 16 alongside lower psychological well-being. 18 However, the acceptability of a weight-neutral intervention, such as intuitive eating, for individuals with PCOS has yet to be explored.
Currently, individuals with PCOS feel largely unsatisfied with the care they receive63–66 and believe that the psychological health of PCOS is largely ignored. 65 Recommendations from the 2023 International Evidence-based Guidelines for the Assessment and Management of PCOS state that lifestyle management priorities should be co-developed in partnership with individuals with PCOS. 2 Lifestyle management approaches will likely be more applicable and acceptable if individuals with PCOS are involved in the design of their care. 67 Through this shared participation, individuals with PCOS may develop increased skills for managing their condition. 67 Lastly, involving individuals with PCOS in the research design can help minimize the misalignment between their needs and researchers’ aims, which often ends up being a major cause of research waste. 67
To date, only two studies have explored the preferred intervention characteristics of a lifestyle intervention among individuals with PCOS. A study conducted in an Australian population with PCOS found that participants were interested in a lifestyle program that was low cost, evidence-based, PCOS-specific, and provided strategies for nutrition and physical activity changes. 68 Additionally, participants reported a desire for the psychological and mental health aspects of PCOS to be explored and to gain skills to navigate body image, weight stigma, and self-esteem. 68 Participants expressed a need for a holistic, multi-disciplinary approach to manage PCOS. Interestingly, an international study reported that 55%–56% of participants were not interested in ketogenic, paleo, or low glycemic index diets. 69 However, a majority of the participants supported content related to psychological well-being, such as getting sufficient sleep (81.2%), practicing stress reduction techniques (74.1%), and getting regular physical activity (65.0%). These results indicate the need to assess the acceptability of a less restrictive approach for PCOS that also promotes psychological well-being.
Additionally, an understanding of the acceptability of a weight-neutral intervention, such as intuitive eating, has yet to be explored in this population. Furthermore, the understanding of the preferred intervention characteristics in a US sample is currently lacking. To best create and tailor a weight-neutral intervention for individuals with PCOS in the United States, an understanding of the specific preferred intervention characteristics is needed. The primary objective of this study was to describe the preferred intervention characteristics of a weight-neutral lifestyle intervention for individuals with PCOS. The secondary objective of this study was to explore the acceptability of intuitive eating as a weight-neutral approach for individuals with PCOS.
Methods
Study design and sample
The current study was a convergent mixed methods analysis (quantitative + qualitative) conducted in individuals with PCOS residing in the United States. Quantitative and qualitative data were collected at the same time point. The findings were analyzed separately, and then both types of data were converged and compared. 70 A mixed methods design was selected to provide a deeper exploration of the preferred intervention characteristics of a lifestyle approach for PCOS than either quantitative or qualitative methodologies could provide alone. The quantitative data were prioritized, as quantitative data collection allowed for a larger sample size, providing more generalizability to the PCOS population at large. The qualitative data were used to explain and enhance findings from the quantitative data. 70 A comparison between the quantitative results and in-depth qualitative findings allowed for a more thorough understanding of the research question.
A convenience sample of participants were recruited for this study through online PCOS support groups (PCOS Support Challenge) and PCOS-specific forums on social media (Reddit, Instagram) between August 2023 and February 2024. Participants were eligible to participate if they had a self-reported PCOS diagnosis, were between the ages of 18 and 40 years, lived in the United States, were able to read and speak the English language, and had access to a smartphone/tablet/computer to complete the study procedures. Potential participants were excluded from the study if they were currently pregnant or breastfeeding. All interested individuals provided online, unsigned informed consent. After accessing the link to the survey, the consent form was the first page displayed. Participants were not allowed to begin the survey unless consent was obtained by clicking “yes” at the bottom of the informed consent page. As this was exploratory research, for the quantitative portion, we aimed to recruit a sample of 250 completed surveys, consistent with other research.68,69 Participants who completed the survey were eligible to enter a lottery for one of nine $25 Amazon gift cards. The study followed the Strengthening and Reporting of Observational Studies (STROBE) guidelines for cross-sectional studies 71 and the Standards for Reporting Qualitative Research checklist for qualitative research. 72
Quantitative data
Quantitative data were collected through an online survey. The survey queried the preferred intervention characteristics of a weight-neutral dietary intervention and assessed the acceptability and appropriateness of intuitive eating for individuals with PCOS. As part of the survey, participants were asked if they had heard about intuitive eating. Participants were then provided with a description of the principles of intuitive eating. This information allowed participants to answer questions regarding their perception of intuitive eating even if they were not previously familiar with the concept. Questions about preferred intervention characteristics were based on the Template for Intervention Description and Replication (TIDieR) checklist 73 and modeled after an Australian survey 68 that assessed preferred lifestyle intervention characteristics of participants with PCOS. The questions centered around “Why, What, Who, Where, When, How, and How Much” regarding a potential intervention. For example, questions included: “How many sessions would you want to attend as part of a lifestyle program?” Which health professional would you prefer to run the lifestyle session?” and “What format of sessions would you prefer?”
To assess the acceptability and appropriateness of an intuitive eating intervention, the psychometrically validated Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and Feasibility of Intervention Measure (FIM) tools were used. 74 The AIM measured acceptability of intuitive eating, or the belief among stakeholders that this particular intervention is agreeable or satisfactory (e.g., “intuitive eating meets my approval”).74,75 The IAM measured the appropriateness of intuitive eating, the perceived relevance, compatibility, or fit of the intervention or treatment for a given individual or population (e.g., “intuitive eating seems fitting for PCOS”).74,75 The FIM measured the feasibility of intuitive eating, the extent to which the intervention can be successfully used or carried out in a particular population or setting (e.g., “intuitive eating seems implementable”).74,75 Each tool contains four questions, measured on a 5-point Likert scale (“completely disagree” to “completely agree”). The average response for each scale was generated, with values ranging from 1 to 5. A higher score was indicative of greater acceptability, appropriateness, or feasibility. The scales have demonstrated strong internal consistency (Cronbach’s alpha: 0.85–0.91). 74 The Cronbach’s alpha for the acceptability, appropriateness, and feasibility measures in this study were 0.92, 0.96, and 0.90, respectively.
The survey also included questions related to the demographic characteristics of participants. The survey queried PCOS-related characteristics, including year of PCOS diagnosis and PCOS symptomology.
Detection of computer-generated responses
The survey included questions to aid in the detection of computer-generated responses. A reCAPTCHA was embedded twice within the survey. Additionally, participants who selected an option to the following question were removed from the analysis: “Please skip this question and move to the next section. Do not click on any of the choices that are labeled below. This question is used to filter random computer-generated responses.” Furthermore, the survey asked participants to report what year they were born and then later also asked their age. If their reported age did not match within 1 year of their estimated age, calculated based on the year they reported being born, the data were removed from analysis. Other open-ended questions, such as “what type of provider diagnosed your PCOS?” and “what is the most troubling symptom, for you, associated with your diagnosis?” were included to further filter out potential computer-generated responses. Inappropriate or illegible responses to these computer-generated response detection questions, as well as responses to questions about height and weight (e.g., >6.5 feet tall; BMI <14.0 kg/m2) resulted in responses being excluded from the analysis.
Qualitative data
For the qualitative portion, a subset of individuals who participated in the survey were invited to participate in a follow-up interview. Maximum variation sampling techniques identified a diverse sample of individuals, helping to ensure the qualitative analysis provided maximum heterogeneity on certain attributes that may have affected preferred intervention characteristics. All participants who completed a qualitative interview were provided a $25 Amazon gift card.
Semi-structured interviews took place over a remote video conferencing platform. The interview questions matched certain constructs being tapped in the survey to allow for convergence of results. After participants were asked, “Tell me what you know about a concept called intuitive eating,” they were given time to review a description of the principles of intuitive eating prior to answering the subsequent questions on intuitive eating. Thus, participants who were not previously familiar with the topic could still answer questions related to their perception of intuitive eating. The interview guide (Figure 1) also included questions related to participants’ knowledge of and acceptability of intuitive eating as a potential lifestyle approach for managing PCOS. The length of each interview was guided by the participant and ranged from 22 to 65 min (37 min on average). Data redundancy guided the qualitative data collection process.
Interview guide for a semi-structured interview exploring the preferred intervention characteristics of a weight-neutral intervention for PCOS.
Data analysis
Quantitative data
Quantitative data were analyzed using SPSS Statistics Version 29. 76 Descriptive statistics were calculated to summarize participant demographics, preferred intervention characteristics, and acceptability, appropriateness, and feasibility of an intuitive eating intervention. Categorical variables were reported as frequencies and percentages. Continuous variables were reported as means and standard deviations. Descriptive statistics for the subsample of participants who completed a qualitative interview were calculated for the variables used in the maximum variation sampling (gender, age, race, ethnicity, BMI, length of time since diagnosis, and acceptability, appropriateness, and feasibility of intuitive eating). Text responses to certain questions in the survey (e.g., “Are there any other topics you wish to be included?”) were coded categorically, and the findings were summarized.
Qualitative data
Interview audio recordings were transcribed verbatim, using a professional transcription service. Transcripts were reviewed for accuracy by a member of the research team. Qualitative data analysis was conducted in Atlas.ti Version 23. 77 Interview transcripts were analyzed utilizing the principles of reflexive thematic analysis,78,79 an interpretative approach to qualitative research used to generate patterns of shared meaning (i.e., themes). Reflexive thematic analysis was chosen as the qualitative approach, due to its theoretical flexibility to answer questions related to people’s experiences, views, and perceptions. 80 In this process, research is situated as a reflexive process, in which the subjective skills the researcher brings to the process are embraced.79,81
For this reflexive thematic analysis, a constructionist approach was utilized, in which meaning and experience were interpreted to be socially produced, and data were co-constructed between researcher and participant. 82 Additionally, an experiential orientation was utilized to emphasize meaning as ascribed by participants, 82 as the aim of the study was to explore the opinions of individuals with PCOS on their preferred intervention characteristics, rather than the socio-cultural factors that potentially underlie these attitudes. 82 A predominantly inductive approach to coding was adopted. Data were open-coded, and meanings were based on the data, rather than pre-existing theory.81,82 A combination of semantic and latent coding was utilized, with semantic codes being used when meaningful explicit information was stated by participants. Latent codes were utilized when underlying assumptions or ideas that shaped the content were inferred by the researcher. 82 This approach was in line with the underlying constructionist assumptions of the analysis, in that meaning was constructed by both the participant and interpretation of the researcher.
The complete interview transcripts were analyzed using the six steps of reflexive thematic analysis. 83 Initially, the first author (SH) familiarized herself with the data, reading through the transcripts, and noting initial ideas and insights. Next, an inductive approach was used to create initial codes that captured salient features of the data in answering the research question. After initial codes were identified, various codes were aggregated to generate themes and sub-themes. Themes were iteratively revised, refined, and checked against coded data and the entire dataset. The final phase in the process was to write up the results by weaving together the analytic narrative and data extracts. To protect their identities, participants’ initials were changed in the write-up of the results.
Mixed methods data integration
Integration of the data occurred at several levels throughout the study. Certain questions were matched across the quantitative questionnaire and semi-structured interview guide to enable a matching, merging, and weaving of quantitative and qualitative findings (Table 2). 70 Quantitative results were compared to qualitative themes regarding the preferred intervention characteristics. The data were integrated through the creation of joint displays, visual displays integrating both qualitative and quantitative findings.70,84–86 Mixed methods inferences were made to assess the fit between the quantitative and qualitative findings, such as convergence, expansion, or discordance. Concordance was achieved if the findings reinforced each other, expansion was achieved if the findings expanded insights, and discordance was achieved if the findings were contradictory. 85
Methodological triangulation of select online survey and semi-structured interview questions from a convergent mixed methods analysis exploring preferred intervention characteristics of individuals with polycystic ovary syndrome living in the United States (
PCOS: polycystic ovary syndrome.
Ensuring rigor
Credibility, or trustworthiness of the qualitative research findings, was enhanced with thick descriptions in the write-up of the work, descriptions rich in concrete details that show the complexity of the findings. 87 Credibility was also increased via triangulation during data integration.87,88 Self-reflexivity was incorporated throughout the study through reflexive journaling during data collection and memoing throughout data analysis to increase the sincerity of the work.81,87
Methodological rigor of this mixed method study was enhanced in several ways. First, parallel questions addressing the same concept were included in the quantitative and qualitative data collection. 70 Additionally, the sample for the qualitative data was taken from the sample of participants who completed the survey. 70 Joint display, a mixed methods convergent data analysis integration strategy, was used to integrate the data. 70
Results
Quantitative results
A total of 845 participants began the survey. Respondents were excluded for not meeting inclusion criteria (
Table 3 displays the demographic characteristics of participants who took the survey. A majority of participants identified as a cisgender woman (95.1%), White (77.7%), and not Hispanic or Latino (86.0%). The subset of the sample that participated in the interview was similar in regards to gender identity (95.7% identified as a cisgender woman), race (83.3% identified as White), and ethnicity (83.3% identified as not Hispanic or Latino). Just over half of the total survey respondents reported being married (52.5%). Nearly half of the participants (43.0%) reported a college degree, with 34.7% reporting earning a post-baccalaureate degree. Nearly a quarter of the sample (21.5%) were current students, with 70.2% of those participants being full-time students. A large majority of participants reported working (89.1%), with 80.3% working full-time. Nearly half of the participants (47.7%) self-described their weight status as “weight is stable, but would like to lose weight.” The average age of all participants was 29.7 ± 5.1 years (range 18–40 years), and the average BMI was 32.0 ± 9.2 kg/m2. The subsample of interview participants had the same mean age (29.7 ± 5.4), but had a slightly higher mean BMI (33.2 ± 8.7 kg/m2). Additionally, this study included participants across a range of BMI categories: 2.7% underweight, 22.5% normal weight, 21.8% overweight, 18.7% obese class I, 15.6% obese class II, and 18.7% obese class III.
Demographic characteristics of a sample of individuals with polycystic ovary syndrome living in the United States who participated in an online survey about their preferred characteristics of a lifestyle intervention (
Missing data from three participants.
Missing data from two participants.
Shown only to participants who reported being a student.
Shown only to participants who reported working.
Missing data from seven participants.
Missing data from five participants.
Table 4 displays the PCOS characteristics of individuals who participated in the survey. More than half of respondents (58.8%) were diagnosed by a gynecologist or obstetrician and gynecologist. Current PCOS-related health concerns included irregular periods (80.1%), anxiety (77.5%), weight gain or obesity (76.0%), excessive hair growth (68.5%), depression (63.3%), and acne (56.2%). When asked to report their most troubling PCOS-related health concern, weight gain/concerns (33.7%) and irregular periods/infertility (28.5%) were the most common responses. 66.8% of participants reported not having a regular (28–35 days) menstrual cycle. Additionally, nearly half of the participants (47.7%), reported having another medical condition in addition to PCOS, including mental health concerns (20.6%), thyroid disorders (11.6%), other cardiometabolic disease (9.7%), gastrointestinal disease (7.1%), and asthma (5.2%). The average age of onset of PCOS symptoms was 17.7 ± 5.6 years; the average age of diagnosis was 22.9 ± 6.3 years. Participants reported living with the diagnosis for an average of 7.5 ± 6.3 years. The subsample of participants who completed interviews had a similar age of onset of symptoms (18.1 ± 5.6 years), age of diagnosis (23.1 ± 6.7 years), and length of time since diagnosis (7.4 ± 6.9 years).
Polycystic ovary syndrome characteristics of individuals with the condition living in the United States who participated in an online survey about their preferred characteristics of a lifestyle intervention (
OBGYN: obstetrician and gynecologist; GP: general practitioner; PCOS: polycystic ovary syndrome.
Free-text response.
Select all that apply question.
Missing data from five participants.
Missing data from three participants.
Missing data from seven participants.
Missing data from two participants.
Table 5 displays the preferred intervention characteristics of a weight-neutral lifestyle intervention for individuals with PCOS. More than half of the surveyed participants expressed interest in taking part in a lifestyle program (66.3%). Only 13.9% reported willingness to attend a lifestyle program if they had to pay out of pocket, whereas 58.1% reported their willingness would depend. A majority of participants (52.6%) reported they would be willing to pay <$50 per session out of pocket.
Preferred intervention characteristics of a weight-neutral lifestyle intervention for individuals with polycystic ovary syndrome living in the United States (
PCOS: polycystic ovary syndrome.
Shown only to those that said yes or it depends.
Select all that apply question.
Free text response.
Missing data from two participants.
Missing data from three participants.
Missing data from one participant.
Coded responses for participants who responded to this question.
Score ranges 0–10, with a higher score indicating higher importance.
The most important lifestyle components included nutrition/diet (94.4%), mental health (90.3%), physical activity (88.8%), and social support (57.7%). Additionally, most respondents reported wanting to make changes to these areas of the lifestyle: nutrition/diet (83.5%), physical activity (72.3%), and mental health (61.8%). Only 34.1% of participants reported wanting to make changes to the social support aspect of the lifestyle.
When asked the number of sessions individuals would want to attend, 37.8% of participants reported five or more, 26.6% of participants reported three. Nearly half of the participants (43.1%) preferred sessions to be 30 min in length. The desired frequency of sessions was similar between every week (30.6%), every other week (34.0%), and every month (33.2%). Over half of participants preferred the sessions to be a mix of individual and group (57.7%) and live and recorded (54.0%). In regards to the delivery format of the intervention, participants were split between all online (46.2%) and a combination of face to face and online (46.2%). For format, participants preferred a discussion (82%), question and answer (73%), as well as lecture (60.3%). The top 3 health professionals preferred to run the lifestyle sessions included a registered dietitian (80.5%), a specialist physician (71.2%), and a psychologist (41.2%). Most participants reported preferring a different healthcare provider to lead each session (54.9%).
The study participants reported that recipes (86.5%), exercise plans (80.5%), presentations (70.8%), worksheets (64.4%), and take home information (76.7%) would be useful. Additionally, topics desired by study participants included education on PCOS (4.5%), dietary approaches for specific symptoms (4.1%), mental well-being/stress reduction/mindfulness (3.4%), hormonal testing/labs (2.2%), and supplements (2.2%). On a scale of 1–10, the average importance of lifestyle changes was 8.2 ± 1.7, with a higher score indicating higher importance. Although not summarized in the table, there were no notable associations among preferred intervention characteristics and BMI categories.
Table 6 displays the acceptability of intuitive eating among the survey participants. Seventy-six percent of participants reported that they had heard of intuitive eating. The average interest in learning more about intuitive eating, on a scale of 1–10, was 7.1 ± 2.7, indicating moderate-high interest. The average interest in incorporating principles of intuitive eating for managing PCOS, on a scale of 1–10, was 7.2 ± 2.7, again indicating a moderate-high interest. The average scores of the acceptability, appropriateness, and FIMs, on a scale of 1–5, were 3.7 ± 0.9, 3.3 ± 1.0, and 3.8 ± 0.8, respectively, with higher scores reflective of greater acceptability, appropriateness, and feasibility. The subsample of participants who completed interviews had similar scores for the acceptability (3.9 ± 0.7), appropriateness (3.4 ± 1.0), and feasibility (4.0 ± 0.7) of intervention measures. No associations were found between having heard of intuitive eating and BMI category. Furthermore, interest, acceptability, appropriateness, and feasibility were not different between BMI categories.
Acceptability of intuitive eating as a lifestyle intervention among a sample of individuals with polycystic ovary syndrome living in the United States (
PCOS: polycystic ovary syndrome.
Possible scores range from 1 to 10, with a higher score indicated higher interest.
Possible scores range from 1 to 5, with a higher score indicating higher acceptability, appropriateness, or feasibility.
Qualitative results
The qualitative data analysis provided insight into the acceptability and interest in adopting intuitive eating principles for the management of PCOS, as well as preferred intervention characteristics of a weight-neutral approach. Figure 2 provides a graphical summary of the main themes identified. The following sections provide detailed descriptions and illustrative quotes.
Themes regarding the acceptability of intuitive eating and preferred intervention characteristics of a weight-neutral lifestyle intervention for individuals with PCOS (
Intuitive eating as a holistic approach to PCOS
Intuitive eating was perceived by participants to be a well-rounded, “holistic” lifestyle approach that had many potential benefits. Participants perceived intuitive eating’s focus on listening to bodily signals, particularly around hunger and fullness, to be a benefit of intuitive eating over other dietary approaches for managing PCOS. Intuitive eating offers a way for individuals with PCOS to acknowledge their hunger and eat in accordance with their bodily cues. Listening to their bodies may offer a way to better understand what their bodies need and in turn respond to those needs. As explained by participant, DG: “I think you could definitely listen to your cravings a little bit more, and I don’t know, I feel, I mean, through my life, I’m kind of at a place where I’m like, I’m really craving almost what I need today. My body needs more fats and my body needs more, whatever. And I know that, again, that’s something, a skill that I’ve brought. I think intuitive eating can definitely be a piece of the puzzle with sort of the balance thing.”
By being in tune with bodily sensations, individuals with PCOS may be better equipped to respond nutritionally to what their bodies need. Rather than ignore their cravings, they can learn to listen and respond to them. This approach may improve symptom management, as explained by NE: “It’s something that I feel like would benefit me instead of trying to regulate myself but not my body, if that makes sense. I can only have meals at this time no matter how I’m feeling. So if I can listen more and I think it would give me more ability to listen to my symptoms. . . is that because of PCOS or is it because of what I’m eating or not eating? So I think intuitive eating may give me a better ability to be more aware of my symptoms.”
By fostering greater body awareness, intuitive eating may promote better symptom management for PCOS.
Additionally, intuitive eating was perceived to have benefits for body appreciation in individuals with PCOS. As the condition often affects physical symptoms, learning to respect one’s body through intuitive eating practices was perceived to have benefits. As LN shared: “Yeah I think generally just having a little more kindness and respect towards your body is definitely something that would be helpful for people with PCOS because I think it can make you feel like your body’s sort of revolting against you and you’re not at one, kind of working on the same team. So I think giving positive reinforcement to your body and how it’s functioning and how you are treating it would be healthy for PCOS.”
Respecting one’s body, as a part of intuitive eating, was identified as being an important factor in navigating some of the negative emotions that come with coping with the physical symptoms of PCOS, such as the “guilt, shame disgust, et cetera, surrounding some of like the outward appearance type things.” Intuitive eating appeared to offer “a plan that encourages you to make peace with your body, like as it is, is so important if you’re struggling with your appearance.” Intuitive eating was valued for its focus on improving body appreciation in individuals with PCOS.
Similarly, participants perceived intuitive eating to have large mental health benefits. The mental health benefits discussed included improvements in “self-esteem,” “depression,” “guilt,” “anxiety,” and “stress.” One participant, CQ, shared that the mental health benefits of intuitive eating would likely come from the principles related to rejecting the diet mentality and making peace with food. She shares: “I think there’s a lot of shame around the fact that, I don’t know, and I have this one friend, we talk about this a lot and she doesn’t have PCOS, but this idea of you should be eating a certain way and from the way that you look, you clearly aren’t eating that certain way, is associated with a lot of shame and I think a negative mental health outcome. And I think that this idea of rejecting diet culture and making peace with the food that you eat and the fact that food doesn’t have to be something that’s associated with guilt, I think is something that would support mental wellness, which I love.”
Intuitive eating’s rejection of diet culture and making peace with food are two components that may be beneficial in improving the guilt and shame that surrounds eating decisions for many individuals with PCOS.
Intuitive eating appeared to differ greatly from other dietary approaches individuals were offered to manage PCOS. As DG explained: “I think it could definitely be useful just because I think it could be a way to step away from this rigid, restrictive advice that we’re given, into something that’s a little bit more manageable and a little bit more balanced and not so exhausting. Because I remember when I was into the restrictive stuff, I would sit at restaurants and not eat and just be miserable all the time and spend all this time in the gym, and it wasn’t joyful, and it was just, yeah, my whole life revolved around my restrictive eating and intuitive eating can give you that freedom and that piece of your life back and the mental energy that most people already don’t have to give because they have jobs and kids and whatever.”
Most participants described being given restrictive dietary advice for the management of their PCOS and related symptoms. Yet, intuitive eating was identified as a different approach to eating, one that is less “rigid” or “restrictive,” and more “manageable,” as it fosters a greater connection with one’s body, rather than relying on external cues to eating, such as calorie counting. Participants described how intuitive eating could benefit their ability to listen to their body, without “harsh diet culture around it, and it’s just kind of about you know respecting your body and respecting the cues that it gives you and honoring that.” For many, this aspect was seen as a positive; “like the thing about eating when you’re hungry, that’s really good because like these restrictive diets that get proposed for PCOS, like you just end up being really hungry all the time and moody and crabby because you like don’t eat.” Overall, intuitive eating was perceived as way to “help people to not feel like they have to give up things as a whole, help it to be like a lifestyle practice that they could make work in their day to day and approach nutrition from an aspect of like okay, this is actually sustainable for me you know to see long-term success.” Intuitive eating was described as a “long term approach” to managing the relationship between food, body, and health in individuals with PCOS.
Concerns over applying intuitive eating principles to PCOS
Yet, concerns emerged about intuitive eating and its relationship to PCOS. These concerns mainly centered around fears of giving up the desire to lose weight, letting go of food rules/restrictions, and putting trust in one’s body. In regards to the desire to lose weight, LD, who shared that she had been struggling with her weight for most of her adult life, stated: “Honestly, candidly, the hardest part about intuitive eating for me is that one of the early idioms is you have to accept that you’re not going to try to lose weight for some period of time. And it’s so difficult to mentally get my head around that, that I’m like, I don’t know if I can do this.”
She expressed concerned over letting go of the desire to lose weight as it may affect her focus in achieving her goals, “it feels like having a tactic of weight loss and managing PCOS feels like a long-term battle and something for me psychologically feels important to have a strategy, a tactic to help keep me focused.” She fears that finding food freedom might interfere with her ability to see results quickly. She explains: “Something about, yeah, I think probably the biggest thing is the drive to see results and make progress. I think with PCOS and I’m in my late thirties, I’d like to conceive and it feels like there’s definitely a time clock, and so I think that one of the hardest parts is, or the biggest barriers is feeling like, this seems really nice, but it seems like an approach that might take many, many years that you would follow over a lifetime to get your health or to improve your health, and sometimes I feel like I don’t have that amount of time. It would’ve been great if I could have come across this in my teenage years actually.”
As a lifestyle approach, intuitive eating was perceived as a more long-term strategy, one that may require more “time and focus” to “rewire the way you eat.” Thus, participants who were eager to see results, expressed concern over the long-term nature of intuitive eating.
Furthermore, letting go of food rules and restrictions through making peace with food was a concern with intuitive eating for PCOS. The freedom to make food choices, rather than rely on food rules, was perceived to be “overwhelming” for participants. MB articulates it as: “So to have all the freedom could be a little overwhelming and could allow for eating a giant thing of M&M’s. If I went to Costco and saw it, because I saw one at Costco the other day and I was like, oh my god, I want that. But you know what I mean? Had I bought that, I am not the type of person that I could just grab a couple. Have one here or there. It would be like I would have to eat handfuls of them. I know they’re on my counter. I would have to just keep going back and going back. And again, a handful would be okay, but not the seven handfuls. So I think that amount of freedom would be a little detrimental also to making the right choices.”
The idea of having food freedom, in which participants can eat what they desire, in accordance with their taste buds and their health, was a worrisome concept, a “big, you know, ask,” and didn’t “feel as sort of like actionable in an obvious way like immediately.” Ultimately, making peace with food was perceived as a barrier to implementing intuitive eating principles.
Although, the primary barrier to intuitive eating was participants’ difficulty trusting their bodies and accurately interpreting hunger cues. Many participants discussed the cravings they have as part of their experience with insulin resistance. Due to these cravings, many struggle with trusting their hunger and satiety cues. BC describes: “Sometimes it’s hard to determine like, is this just insulin resistance or is it that my body is actually needing and wanting, you know, carbohydrates or sugar, whatever it is, um that the insulin resistant part is really hard to navigate, at least at the beginning. I’m still in the process of figuring out how, how that works, you know? But that’s what I think probably is to me, one of the biggest I could see as one of the biggest drawbacks is just, it’s hard to know what is like, almost true, like what is true, what your body is needing.”
Differentiating hunger, fullness, and cravings was perceived to be “difficult with insulin resistance in particular, that can make your body crave simple carbohydrates.” Due to these cravings, many participants expressed concern over being able to accurately trust their bodies to give them appropriate signals for hunger and satiety. Overall, concerns about applying principles of intuitive eating for PCOS were identified.
Need for an individualized approach for implementing intuitive eating principles
Individuals with PCOS felt that intuitive eating was a “holistic” and “sustainable” approach to managing their health, yet had concerns over their ability to “trust their bodies.” This understanding led to the identification of a theme regarding the need for more tailored and specific education around intuitive eating and lifestyle as it relates to PCOS. Participants expressed “frustration” over the lack of individualized guidance and “one size fits all” or “band-aid” care they have received.
Overall, participants expressed a need for support in incorporating intuitive eating principles. Many participants articulated the need actionable steps, “cause like if you gave me those 10 principles just on their own, I’d be like, okay now what?” Participants expressed that “some more information or some examples of putting this into practice would be helpful.” Additionally, participants provided suggestions on how to break down the principles, “just taking it section by section” would help it feel less “overwhelming.” When asked how comfortable she would feel in practicing intuitive eating for PCOS, CQ stated: “I feel like if it’s not surrounded by something, I would be nervous about my ability to actually engage in it, if that makes sense. I could put this up on my fridge, but I would love if somebody was like, okay, and here’s a packet of worksheets to work in it with or now I get to talk to somebody once a week about it, et cetera.”
In addition to working with a professional to support the adoption of intuitive eating principles, a strong desire for peer support was identified. IW expressed her desire for peer support as: “I really think just having the support of other people who are following it too can help. That’s really the one thing that comes to mind. Just having that support system and network of you know people enduring the same situation and just kind of keeping the checks and balances in place and holding each other accountable can be helpful.”
As the intuitive eating principles on their own can feel “overwhelming,” having professional and peer support was identified as necessary for the implementation of an intuitive eating intervention for PCOS.
Furthermore, a need to understand the benefits of intuitive eating specifically for PCOS was expressed by participants. CQ shared: “I want to know, oh, this helps balance your hormones or this helps you do whatever. I think that that would be cool information to understand because it’s hard to, and maybe it’s also just my own ignorance about my diagnosis, it’s hard to know how this would affect my PCOS because I don’t really a hundred percent know how diet can change my PCOS.”
Overall, the qualitative analysis identified that while intuitive eating offers many benefits to individuals with PCOS, concerns exist over implementing the principles, and individuals desire practical guidance and support.
Mixed methods integration
When quantitative and qualitative data were integrated, concordance was present among most of the findings. Table 7 displays the narrative joint displays with meta-inferences. Concordance between the quantitative and qualitative findings was seen for the priority of nutrition in the lifestyle, format of sessions (individual, group, or combination), delivery of sessions (in person, remote, or combination), preferred provider to administer sessions, and interest in an interdisciplinary team. The qualitative data supported the quantitative data in that nutrition was an important component of the lifestyle and participants preferred the format of intervention sessions to be a combination of individual and group, delivered in-person and remotely. Additionally, most participants preferred a registered dietitian to lead the lifestyle intervention, but were also interested in an interdisciplinary approach. Furthermore, concordance in the overall interest in the principles of intuitive eating for the management of PCOS was identified.
Narrative joint displays of quantitative and qualitative findings with meta-inferences from a convergent mixed method analysis of the preferred lifestyle intervention characteristics of individuals with polycystic ovary syndrome (
PCOS: polycystic ovary syndrome.
In regards to frequency of sessions for a lifestyle intervention, the qualitative findings expanded the quantitative findings. The quantitative findings demonstrated 30.6% of participants reported wanting to attend program sessions every week, whereas 33.0% reported wanting to attend sessions every month. Insights from the qualitative analysis highlighted that individuals with PCOS largely prefer sessions to start off at once per week, with the cadence decreasing to once per month as individuals became more comfortable with the concepts. Additionally, the qualitative findings expanded the quantitative findings on both the acceptability and appropriateness of intuitive eating. The quantitative analysis found the mean acceptability and appropriateness scores of intuitive eating to be 3.7 ± 0.9 and 3.3 ± 1.0, respectively, on a scale of 1–5, with a higher score reflective of greater acceptability and appropriateness. The qualitative findings found intuitive eating to largely be an acceptable intervention for PCOS, though intuitive eating may not be a one-size-fits-all approach. Results from the qualitative analysis highlighted specific concerns around intuitive eating’s appropriateness for PCOS, including the fears of letting go of restrictions and trusting one’s hunger signals. Discordance emerged between the quantitative and qualitative findings for the feasibility of intuitive eating. While the feasibility score was reported as 3.8 ± 0.8 (on a scale of 1–5, with a higher score reflective of greater feasibility), the qualitative findings indicated that intuitive eating principles would be challenging to implement without practical strategies and guidance.
Discussion
This convergent mixed methods study (quantitative + qualitative) found that individuals with PCOS were interested in a lifestyle program. Nutrition/diet, physical activity, and mental health were reported as the most important components to include. Scores for acceptability, appropriateness, and feasibility of intuitive eating were moderate. Participants reported concern over letting go of a diet mentality, letting go of food rules, and navigating insulin resistance through intuitive eating. Mixed methods integration revealed discordance between the feasibility of intuitive eating in the quantitative and qualitative data. For instance, although the feasibility of intuitive eating was reported as moderate in the survey, participants expressed the need for more practical guidance and support to assist in the implementation of intuitive eating in the qualitative interview. While individuals with PCOS are largely interested in a lifestyle approach, our findings indicate some trepidation surrounding a weight-neutral intervention. Thus, intuitive eating may not be an acceptable intervention for some individuals with PCOS.
As this study utilized an exploratory convergent mixed methods design, the impact of intuitive eating in PCOS was not collected. To date, intuitive eating has not yet been examined as an intervention in the PCOS population. Yet, throughout the research literature, nutrient-focused interventions have been explored for PCOS, including low glycemic index, high protein, and ketogenic diets.34,89 Additionally, different dietary patterns have also been examined, such as the dietary approaches to stop hypertension (DASH), Mediterranean, anti-inflammatory, and plant-based diets, as well as alterations in meal timings and frequency.33,89,90 Many of these interventions have shown similar improvements in PCOS-related cardiometabolic outcomes, including decreased weight, waist circumference, fasting glucose, fasting insulin, and lipid concentrations.33,89
Energy restrictions have also been included in several of these interventions.33,89 While interventions utilizing energy restriction have shown beneficial effects on cardiometabolic outcomes, PCOS affects individuals of all body shapes and sizes, and thus energy-restricted dietary approaches may not be universally applicable. Notably, lifestyle interventions without energy restriction have demonstrated comparable improvements in cardiometabolic risk. 33 This finding supports the use of weight-neutral or non-energy-restricted approaches, particularly for individuals across weight ranges and those with disordered eating history.
Despite PCOS affecting individuals across body weights, lifestyle interventions to date have typically only included individuals with overweight and obesity as participants. 33 Individuals with PCOS who are of healthy BMI have similar metabolic abnormalities, such as insulin resistance. 34 The present study included individuals with PCOS across BMI ranges. Acceptability of intuitive eating was similar across all BMI categories, indicating intuitive eating is of interest to individuals with PCOS regardless of body shape or size.
Although intuitive eating was found to be moderately acceptable by individuals in the present study, participants were not asked about acceptability of other dietary approaches (e.g., DASH, Mediterranean diet, low glycemic index). Thus, we cannot compare the acceptability of different dietary approaches for PCOS. However, an international survey of individuals with PCOS reported that 55%–56% were not interested in ketogenic, paleo, or low glycemic index diets. 69 In other research, individuals with PCOS have identified restrictive dieting as a barrier to engaging socially in their general life. 91 In the present study, participants reported intuitive eating to be less restrictive and more gentle compared to other approaches for PCOS. While an intuitive eating intervention has yet to be explored in PCOS, intuitive eating interventions have been studied in other disease states and have demonstrated benefits to cardiometabolic health and psychological well-being.45,46 Furthermore, non-dieting interventions, such as intuitive eating, have reported much lower attrition rates than dieting approaches.33,45
To date, two studies have explored the preferred intervention characteristics among individuals with PCOS. Similar to the current study, both studies consisted of a predominantly Caucasian, college-educated sample, with participants having a PCOS diagnosis for over 5 years.68,69 In an Australian study, participants identified registered dietitians as the preferred health professional to administer an intervention. 68 Similar to our findings, participants also expressed interest in a variety of disciplines being involved in an intervention. 68 Once again, participants from the Australian study and the present study, conducted in the United States, both reported a preference for a mix of individual and group sessions, with a combination of online and in person. 68 In the Australian study, participants desired PCOS-specific, long-term guidance, with a focus on the mental health effects of PCOS. 68 Similarly, the participants in the current study expressed the importance of practical, individualized healthcare, rather than a one-size-fits-all approach. In another study, participants with a higher body weight expressed more interest in losing weight, 69 which differs from the current findings. Interestingly, the mean BMI in that study 69 was 29.6 ± 9.7 kg/m2, while the mean BMI of the present study was 32.0 ± 9.2 kg/m2.
Our findings are in alignment with current clinical guidelines from the 2023 International Evidence-Based Guidelines for the Assessment and Management of PCOS and evidence-based practice, which recognizes weight stigma present in PCOS, and recommends that unduly restrictive diets are not recommended. 2 Furthermore, clinical guidelines highlight that improvements to health can be seen even in the absence of weight loss. 2 Participants in this study reported desiring individualized care, rather than one-size-fits-all approaches to manage PCOS. As the condition affects individuals in varied ways, an interdisciplinary, individualized approach that considers the whole person is of utmost importance in future interventions.
This study offers new insight into how individuals with PCOS view a weight-neutral intervention, such as intuitive eating. Our findings highlight that individuals with PCOS are open to non-weight-focused, individualized approaches that are centered around the whole person. Participants in this study also expressed a need for practical guidance in the implementation of intuitive eating. Future research should incorporate the preferred intervention characteristics identified in this study when implementing an intuitive eating intervention for PCOS.
Strengths and limitations
The mixed methods approach to data collection and analysis in this study, incorporating both quantitative and qualitative techniques, strengthens the findings of this study. Additionally, our sample included participants across all BMI categories, as underweight and normal weight individuals have not been historically included in this body of research. Intuitive eating was introduced to participants at two time points, during the online survey and during the interview. During both time points, participants were given a brief description of intuitive eating and its 10 principles. Additionally, intuitive eating was not part of the language on the recruitment materials for the study. Thus, participants did not self-select to participate due to their interest in intuitive eating. Despite this, bias may still be present.
Notable limitations include the self-report PCOS status from the convenience sample of participants. PCOS diagnosis was not verified using the Rotterdam criteria. Furthermore, the population was relatively homogenous (77.7% White, 86% Non-Hispanic, 95.1% cisgender) and highly educated. Participants were not asked if they were actively trying to conceive. Questions on the preferred intervention characteristics were modeled from the TIDieR checklist 11 and an Australian study. 9 As the questions were not validated in the format used in the present study, this presents a limitation and may have introduced bias.
Additionally, only 21.4% of the invited participants elected to participate in the semi-structured interviews. Thus, the findings may not be generalizable to all individuals with PCOS. The interview guide did not explicitly include questions related to systemic barriers that might hinder the adoption of intuitive eating, such as socioeconomic barriers or access to healthcare.
Furthermore, social media was the study recruitment method. These recruitment strategies may have biased the sample toward individuals already engaged in support communities with a higher interest in exploring alternative interventions. Data were collected virtually, thus, the study did not collect cardiometabolic measures, such as blood glucose, insulin, and lipid concentrations, and blood pressure. Lastly, the self-reported nature of height, weight, and other symptoms could be subject to reporting bias.
Implications for practice
As PCOS is present across all BMI categories, weight-neutral interventions, such as intuitive eating, could be tailored to individuals of all body shapes and sizes. Intuitive eating should not be applied as a one-size-fits-all approach, but rather the principles and practices should be utilized in a tailored manner to each individual. Furthermore, an understanding of the barriers to the implementation of intuitive eating should be considered in the design of future lifestyle interventions.
Healthcare providers should be aware of the preferred characteristics of a lifestyle intervention and model components of their care to match the desires of individuals with PCOS, such as in format and frequency of sessions. Additionally, physicians, nurses, nurse practitioners, and psychologists should consider referring patients to registered dietitians to provide nutrition and lifestyle counseling. Registered dietitians could consider intuitive eating as a possible approach to manage the multifaceted nature of PCOS. Adequate training of registered dietitians and other healthcare professionals in intuitive eating and weight-neutral care is necessary prior to the application of this approach. Resources for healthcare providers should be developed for use in visits with this population. In discussing intuitive eating to manage PCOS, potential concerns should be discussed and support given. Providers should also continue to recognize that there is no one-size-fits-all strategy for PCOS. Thus, similar to other treatment paradigms, intuitive eating is likely not a universally appropriate approach. Overall, informed clinical decision-making should be shared between patients with PCOS and their providers.
Implications for research
Future studies should consider these preferred intervention characteristics in the design and implementation of a lifestyle intervention for PCOS. Additionally, future work should explore the preferences of individuals from different racial, ethnic, and cultural backgrounds, as well as gender-diverse individuals to enhance representativeness and provide a more inclusive understanding of PCOS care preferences. Individuals across all BMI categories should be included in future work. Moreover, when feasible, research studies should incorporate clinical verification of PCOS diagnosis to improve data accuracy and validity.
Research exploring the hesitations around intuitive eating should be considered. Additionally, other systemic barriers, including socioeconomic factors and access to healthcare providers, that could interfere with adoption of intuitive eating should be explored. Moreover, an exploration of the perceptions of healthcare providers toward a weight-neutral approach should be undertaken. Longitudinal study designs should explore the sustainability of intuitive eating interventions and their long-term impact on PCOS management.
Conclusion
In summary, individuals with PCOS desire a multidisciplinary, biopsychosocial lifestyle approach to PCOS that combines individual and group perspectives, delivered through a combination of in-person and remote modalities. Furthermore, most individuals express interest in intuitive eating, as a weight-neutral lifestyle approach. Healthcare providers should be aware of the preferred intervention characteristics and implement them, when appropriate, in the care of individuals with PCOS.
Footnotes
ORCID iD
