Qualitative study of self-reported experiences of infertile women with polycystic ovary syndrome through on-line discussion forums
Open accessAbstract
OBJECTIVES: To highlight the self-reported experiences and disease perceptions of infertile women with polycystic ovary syndrome (PCOS). METHODS: A qualitative study using an inductive method was conducted on infertile women with PCOS who shared their self-reported experiences on French-speaking on-line forums. RESULTS: 785 comments by 211 women on 7 forums were analyzed. Women complained of late diagnosis and lack of information regarding PCOS. PCOS and infertility showed negative psychological impact on daily life. This impact appeared to be alleviated by the sharing of knowledge and experience enabled by these forums. CONCLUSION: The self-reported experience of infertile women with PCOS is interesting for health practitioners. The psychological impact of PCOS and perceptions of illness appear to be improved by sharing experiences between women with PCOS, suggesting a beneficial support role of online discussion forums.
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Women with PCOS felt overwhelmed by the amount of information and doubted the information's reliability.
“women with PCOS felt overwhelmed by the amount of information and doubted the information’s reliability [3840]”
From Availability and Use of Digital Technology Among Women With Polycystic Ovary Syndrome: Scoping Review (2025) · cites this paper as [38]
Section 3.1 says infertile women with PCOS found the quantity and complexity of information at medical consultations difficult to absorb. Section 3.3 reports that conflicting medical opinions led some to question physicians’ assessments and even their diagnosis, while section 4.1 discusses variable reliability of online information. The paper does not clearly report that the women doubted the reliability of the information as a whole. (LLM, conf=0.82)
Experimental — accuracy not yet measuredDiscussion forums appear beneficial by providing a source of support and sharing of empirical knowledge between those with PCOS.
“Nevertheless, the results from this study show how discussion forums appear to be beneficial by providing a source of support and sharing of empirical knowledge between those with PCOS [90].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [90]
Eight included studies in the scoping review related to PCOS content on websites.
“Eight included studies related to PCOS content on websites [46,47,90,91,92,93,94,95] (Supplementary File S3).”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [90]
One website study looked at French language internet forums.
“The majority (n = 5) involved analysis of content from search engine results [46,47,91,94,95], while one each looked at content in teen and women’s digital magazines [93], French language internet forums [90], and a specific PCOS-related website [92].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [90]
Content analysis of French language internet forums revealed anxiety and psychological distress are frequently omitted by health practitioners.
“Content analysis of French language internet forums revealed how those with PCOS perceive the medical information provided to them as inadequate or insufficient, as well as how anxiety and psychological distress are frequently omitted by their health practitioners [90].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [90]
Content analysis of French language internet forums revealed those with PCOS perceive medical information provided to them as inadequate or insufficient.
“Content analysis of French language internet forums revealed how those with PCOS perceive the medical information provided to them as inadequate or insufficient, as well as how anxiety and psychological distress are frequently omitted by their health practitioners [90].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [90]
The eight website studies originated from France, USA, Australia, Croatia, Greece, and the UK, with specified publication years.
“Regarding publication date and country of origin, two studies published in 2020 were from France [90] and USA [92], two in 2018 from Australia [46,47], one in 2016 from the USA [93], one in 2023 from Croatia [91], one in 2012 from Greece [94], and another in 2010 from the UK [95].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [90]
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References 37 · Cited by 23
- Authors
- Authier, M., Normand, C., Jego, M., Gaborit, B., Boubli, L., & Courbiere, B.
- Affiliations
- Aix-Marseille Université (FR)
- Inserm (FR)
- Hôpital de la Conception (FR)
- Corresponding author
- Authier, Magali
- ORCID
- Gaborit, Bénédicte
- Venue
- Annales d'Endocrinologie
- Publisher
- Elsevier BV
- Published
- 2020-10
- Volume
- 81
- Issue
- 5
- Pages
- 487-492
- ISSN
- 0003-4266 (ISSN-L)
- OpenAlex
- W3064485967
- Cited by
- 23
- References
- 37
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 3 · 2023: 8 · 2022: 4 · 2021: 1 · 2020: 1
- FWCI
- 3.08
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Annales d Endocrinologie (acceptedVersion, other-oa)
- PubMed (publishedVersion)
- HAL (submittedVersion, other-oa)
- Topics
- Health Sciences › Medicine › Reproductive Medicine › Ovarian function and disorders
- Health Sciences › Medicine › Reproductive Medicine › Reproductive Health and Technologies
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Keywords
- polycystic ovary syndrome, infertility, patient experience, online forums, illness perception, psychological impact, delayed diagnosis, lack of information, peer support, knowledge sharing
- MeSH terms
- Online Social Networking, Adult, Female, France, Humans, Infertility, Female, Middle Aged, Polycystic Ovary Syndrome, Quality of Life, Self-Help Groups, Patient Satisfaction, Internet, Information Dissemination, Qualitative Research, Young Adult, Self Report, Patient Outcome Assessment
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