Health literacy needs in weight management of women with Polycystic Ovary Syndrome
Open accessAbstract
Issue addressed: Lifestyle modification plays a key role in weight management and chronic disease prevention in polycystic ovary syndrome (PCOS). Women with PCOS experience challenges in adopting and maintaining healthy lifestyle behaviours, which may be related to health literacy. The aims of this study were to explore the health literacy needs of women with PCOS in lifestyle and weight management to inform research and practice. Methods: Ten women with PCOS participated in focus groups and semi‐structured telephone interviews on lifestyle and weight management in PCOS. Results: For functional health literacy, women with PCOS are highly motivated for lifestyle and weight management due to the long‐term consequences of PCOS. For interactive health literacy, barriers included delayed diagnosis and poor communication. Women with PCOS were resourceful in accessing a wide range of weight management services but some experience barriers such as costs or the feelings of embarrassment associated with accessing relevant services. For critical health literacy, no facilitators and barriers could be identified for the domain of participation in making decisions for health. Conclusions: Women with PCOS experience facilitators and barriers in functional and interactive health literacy in lifestyle and weight management. So what?: Future interventions should seek to further understand and address these gaps in health literacy by increasing weight management skills through behaviour change techniques, improving health professional‐patient communication through tools such as question prompt lists, enhancing peer support by increasing distributed health literacy in PCOS support groups and by providing opportunities for co‐design of interventions.
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Nine included papers report on patients' own preferences, views, and experiences of the IoT for PCOS-related reasons.
“Nine included papers report on patients’ own preferences, views, and experiences of the IoT for PCOS-related reasons [17,44,45,97,98,99,100,101,102] (Supplementary File S4).”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [44]
The Results and Interactive health literacy sections report women with PCOS describing positive and negative experiences of online support groups. The paper therefore supports the patient-experience aspect, but it does not study the Internet of Things as such. The count of nine included papers belongs to the citing review, not to this individual study. (LLM, conf=0.78)
Experimental — accuracy not yet measuredWomen with PCOS brought attention to the negative aspect of reading online comments and how it can lead to distress, feeling isolated, and anxiety, especially for those trying to get pregnant.
“Women with PCOS brought attention to the negative aspect of reading online comments and how it can lead to distress, feeling isolated, and even anxiety, especially for those trying to get pregnant [44,45,101].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [44]
The Interactive health literacy discussion (section 4.2; page unavailable) reports negative experiences with online PCOS support groups and cites a past study linking others’ negative posts to anxiety. It discusses isolation separately as a possible consequence of lacking peer support. It does not link online comments to isolation or distress specifically, or identify women trying to get pregnant as especially affected. (LLM, conf=0.85)
Experimental — accuracy not yet measuredPositive feedback regarding online forums as a place for support by connecting with others and finding anecdotal information was shared in three Australian studies, one UK study, and one Canada study.
“Nevertheless, positive feedback regarding how those with PCOS consider online forums to be a place where they can find support by connecting with others going through relatable struggles, finding anecdotal information was shared in three Australian studies [44,45,102], one in the UK [101], and one in Canada [98].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [44]
Publication dates of participant voices papers ranged from 2007 to 2023, with the majority from Australia (n = 6), two from the UK, and one from Canada.
“The publication dates ranged from 2007 to 2023, with the majority originating from Australia (n = 6) [17,44,45,97,99,102], while two originated from the UK [100,101], and one from Canada [98].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [44]
There has been very limited research on health literacy in women with PCOS.
“However, there has been very limited research on health literacy in women with PCOS, as discussed below [89,90].”
From Providing lifestyle advice to women with PCOS: an overview of practical issues affecting success (2021) · cites this paper as [90]
This results in an unstructured approach usually lacking in key behaviour change techniques such as goal setting and self-monitoring.
“This results in an unstructured approach usually lacking in key behaviour change techniques such as goal setting and self-monitoring such as keeping a food diary [90,96].”
From Providing lifestyle advice to women with PCOS: an overview of practical issues affecting success (2021) · cites this paper as [90]
In the authors' previous study on health literacy in women with PCOS, none of the participants attributed their past successes in lifestyle and weight management to a strong partnership with a healthcare professional.
“In our previous study on health literacy in women with PCOS, none of the participants attributed their past successes in lifestyle and weight management to a strong partnership with a healthcare professional [90], which is an essential component of critical health literacy [91,103,104].”
From Providing lifestyle advice to women with PCOS: an overview of practical issues affecting success (2021) · cites this paper as [90]
The omission of key behaviour change strategies could explain the lack of weight loss success frequently reported by women with PCOS.
“The omission of key behaviour change strategies could explain the lack of weight loss success frequently reported by women with PCOS [90].”
From Providing lifestyle advice to women with PCOS: an overview of practical issues affecting success (2021) · cites this paper as [90]
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Cited by
Sorted by citations
Providing lifestyle advice to women with PCOS: an overview of practical issues affecting success
Ee, C., Pirotta, S., Mousa, A., Moran, L., & Lim, S. (2021) · BMC Endocrine Disorders · doi:10.1186/s12902-021-00890-8 · Cited by 70 · see citing works
“professional [90], which is an essential component of critical health literacy [91, 103, 104].”
BackgroundInfluentialSelf-citationLau, G. M., Elghobashy, M., Thanki, M., Ibegbulam, S., Latthe, P., Gillett, C. D. T., O’Reilly, M. W., Arlt, W., Lindenmeyer, A., Kempegowda, P., et al. (2022) · Frontiers in Endocrinology · doi:10.3389/fendo.2022.1064937 · Cited by 36 · see citing works
“Barriers to management Although some literature has suggested that adherence to lifestyle modification advice is difficult for those with PCOS (50), others have found that in fact women with PCOS are more likely to attempt most weight loss approaches, such as “various dietary patterns, exercise, medication, meal repla…”
BackgroundMcGowan, M., Garad, R. M., Wadhwani, G., Torkel, S., Rao, V. S., Maunder, A., Osei‐Safo, E. K., Moran, L., & Cowan, S. (2024) · Obesity Reviews · doi:10.1111/obr.13854 · Cited by 26 · see citing works
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Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review
Graca, S., Alloh, F., Lagojda, L., Dallaway, A., Kyrou, I., Randeva, H. S., & Kite, C. (2024) · Healthcare · doi:10.3390/healthcare12161671 · Cited by 14 · see citing works
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“…criteria ( Avery and Braunack-Mayer, 2007 ), fi ve used Rotterdam criteria (Bazarganipour, 2017; Hadjiconstantinou et al., 2017 ; Kaur et al., 2021 ; Lim, Smith et al., 2021 ; Tomlinson et al., 2017 ) and fi ve did not specify the criteria used ( Crete, 2011 ; Hajivandi et al., 2022 ; Sharma and…”
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“22 23 However, the relationship between health literacy and health behaviours was not explored.”
BackgroundLim, S., Wright, B., Savaglio, M., Goodwin, D., Pirotta, S., & Moran, L. (2021) · Seminars in Reproductive Medicine · doi:10.1055/s-0041-1735575 · Cited by 10 · see citing works
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“A previous study suggests that the challenges and barriers to implementing life management in patients with PCOS may be related to health literacy (HL) [7].”
Background“I feel like it gets worse as I get older”: perspectives of peri-postmenopausal women with PCOS
Wright, P. J., Corbett, C. F., Dawson, R. M., & Burts, C. (2025) · Frontiers in Global Women s Health · doi:10.3389/fgwh.2025.1588505 · Cited by 3 · see citing works
“Findings from a qualitative study involving focus groups and interviews of women with PCOS revealed that both interactive (engagement with healthcare providers) and functional health literacy (skills to enact weight management) are problems (32).”
LIFE STYLE MODIFICATION FOR PCOS: SYSTEMATIC REVIEW AND META ANALYSIS
Kaleeswari, G., & Rajalakshmi, S. (2025) · International Journal of Innovative Research in Health Science · doi:10.63349/ijirhs.202469 · Cited by 1 · see citing works
“Polycystic Ovary Syndrome nis a complex endocrine condition characterized by irregular menses, clinical or biochemical hyperandrogenism, and polycystic ovarian morphology, affecting many women of reproductive age and leading to metabolic, reproductive, and psychological complications (1,3).”
- Authors
- Lim, S., Smith, C. A., Costello, M. F., MacMillan, F., Moran, L., Teede, H., & Ee, C.
- Affiliations
- Monash University (AU)
- Western Sydney University (AU)
- Royal Hospital for Women (AU)
- Monash Medical Centre (AU)
- Corresponding author
- Ee, Carolyn
- ORCID
- Venue
- Health Promotion Journal of Australia
- Publisher
- Wiley
- Published
- 2020-05-26
- Volume
- 32
- Issue
- S1
- Pages
- 41-48
- ISSN
- 1036-1073 (ISSN-L)
- 2201-1617
- OpenAlex
- W3020319353
- Cited by
- 14
- References
- 0
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 4 · 2023: 4 · 2022: 2 · 2021: 2
- FWCI
- 2.09
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Promotion Journal of Australia (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Medicine › Reproductive Medicine › Ovarian function and disorders
- Health Sciences › Health Professions › Pharmacy › Obesity and Health Practices
- Keywords
- polycystic ovary syndrome, health literacy, weight management, lifestyle modification, functional health literacy, interactive health literacy, critical health literacy, barriers to health services, health professional-patient communication, peer support, behaviour change techniques, women's health
- MeSH terms
- Female, Humans, Life Style, Polycystic Ovary Syndrome, Health Literacy
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