Social Media, Endometriosis, and Evidence-Based Information: An Analysis of Instagram Content

doi:10.3390/healthcare12010121

. 2024 Jan 4;12(1):121.

doi: 10.3390/healthcare12010121.

Social Media, Endometriosis, and Evidence-Based Information: An Analysis of Instagram Content

Hannah Adler¹, Monique Lewis¹, Cecilia Hoi Man Ng^{2

3

4}, Cristy Brooks^{5

6}, Mathew Leonardi^{7

8}, Antonina Mikocka-Walus⁹, Deborah Bush¹⁰, Alex Semprini^{11

12

13}, Jessica Wilkinson-Tomey⁵, George Condous^{14

15}, Nikhil Patravali^{15

16

17

18}, Jason Abbott^{2

3

4}, Mike Armour^{6

13}

Affiliations

¹ Centre for Social and Cultural Research, Griffith University, Gold Coast, QLD 4215, Australia.
² Division of Obstetrics and Gynaecology, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, NSW 2052, Australia.
³ Gynaecological Research and Clinical Evaluation (GRACE) Unit, Royal Hospital for Women, Sydney, NSW 2031, Australia.
⁴ National Endometriosis Clinical and Scientific Trials (NECST) Network, University of New South Wales, Sydney, NSW 2052, Australia.
⁵ School of Health Sciences, Western Sydney University, Sydney, NSW 2751, Australia.
⁶ Translational Health Research Institute, Western Sydney University, Sydney, NSW 2751, Australia.
⁷ Department of Obstetrics and Gynecology, McMaster University, Hamilton, ON L8S 4LB, Canada.
⁸ Robinson Research Institute, University of Adelaide, Adelaide, SA 5006, Australia.
⁹ School of Psychology, Deakin University, Melbourne, VIC 3125, Australia.
¹⁰ World Endometriosis Organisations (WEO), Christchurch 8013, New Zealand.
¹¹ Medical Research Institute of New Zealand, Wellington 6021, New Zealand.
¹² School of Biological Sciences, Victoria University of Wellington, Wellington 6021, New Zealand.
¹³ NICM Health Research Institute, Western Sydney University, Sydney, NSW 2145, Australia.
¹⁴ Endometriosis Ultrasound and Advanced Endosurgery Unit, Sydney Medical School Nepean, Sydney, NSW 2747, Australia.
¹⁵ Nepean Hospital, University of Sydney, Sydney, NSW 2747, Australia.
¹⁶ School of Medicine, University of Sydney, Sydney, NSW 2747, Australia.
¹⁷ Monash IVF, Sydney, NSW 2747, Australia.
¹⁸ Mildura Private Hospital, Mildura, VIC 3500, Australia.

PMID: 38201027
PMCID: PMC10778603
DOI: 10.3390/healthcare12010121

Social Media, Endometriosis, and Evidence-Based Information: An Analysis of Instagram Content

Hannah Adler et al. Healthcare (Basel). 2024.

. 2024 Jan 4;12(1):121.

doi: 10.3390/healthcare12010121.

Authors

Affiliations

¹ Centre for Social and Cultural Research, Griffith University, Gold Coast, QLD 4215, Australia.
² Division of Obstetrics and Gynaecology, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, NSW 2052, Australia.
³ Gynaecological Research and Clinical Evaluation (GRACE) Unit, Royal Hospital for Women, Sydney, NSW 2031, Australia.
⁴ National Endometriosis Clinical and Scientific Trials (NECST) Network, University of New South Wales, Sydney, NSW 2052, Australia.
⁵ School of Health Sciences, Western Sydney University, Sydney, NSW 2751, Australia.
⁶ Translational Health Research Institute, Western Sydney University, Sydney, NSW 2751, Australia.
⁷ Department of Obstetrics and Gynecology, McMaster University, Hamilton, ON L8S 4LB, Canada.
⁸ Robinson Research Institute, University of Adelaide, Adelaide, SA 5006, Australia.
⁹ School of Psychology, Deakin University, Melbourne, VIC 3125, Australia.
¹⁰ World Endometriosis Organisations (WEO), Christchurch 8013, New Zealand.
¹¹ Medical Research Institute of New Zealand, Wellington 6021, New Zealand.
¹² School of Biological Sciences, Victoria University of Wellington, Wellington 6021, New Zealand.
¹³ NICM Health Research Institute, Western Sydney University, Sydney, NSW 2145, Australia.
¹⁴ Endometriosis Ultrasound and Advanced Endosurgery Unit, Sydney Medical School Nepean, Sydney, NSW 2747, Australia.
¹⁵ Nepean Hospital, University of Sydney, Sydney, NSW 2747, Australia.
¹⁶ School of Medicine, University of Sydney, Sydney, NSW 2747, Australia.
¹⁷ Monash IVF, Sydney, NSW 2747, Australia.
¹⁸ Mildura Private Hospital, Mildura, VIC 3500, Australia.

PMID: 38201027
PMCID: PMC10778603
DOI: 10.3390/healthcare12010121

Abstract

Social media platforms are used for support and as resources by people from the endometriosis community who are seeking advice about diagnosis, education, and disease management. However, little is known about the scientific accuracy of information circulated on Instagram about the disease. To fill this gap, this study analysed the evidence-based nature of content on Instagram about endometriosis. A total of 515 Instagram posts published between February 2022 and April 2022 were gathered and analysed using a content analysis method, resulting in sixteen main content categories, including "educational", which comprised eleven subcategories. Claims within educational posts were further analysed for their evidence-based accuracy, guided by a process which included fact-checking all claims against the current scientific evidence and research. Of the eleven educational subcategories, only four categories (cure, scientific article, symptoms, and fertility) comprised claims that were at least 50% or greater evidence-based. More commonly, claims comprised varying degrees of evidence-based, mixed, and non-evidence-based information, and some categories, such as surgery, were dominated by non-evidence-based information about the disease. This is concerning as social media can impact real-life decision-making and management for individuals with endometriosis. Therefore, this study suggests that health communicators, clinicians, scientists, educators, and community groups trying to engage with the endometriosis online community need to be aware of social media discourses about endometriosis, while also ensuring that accurate and translatable information is provided.

Keywords: Instagram; advocacy; endometriosis; pelvic pain; social media.

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Conflict of interest statement

Cecilia Ng receives research funding from the Australian Federal Government, Medical Research Future Fund (MRFF), is a former employee of CSL Vifor, and manages research funding outside the submitted work. Mathew Leonardi reports grants from Australian MRFF, AbbVie, CanSAGE, Hamilton Health Sciences, Hyivy, Pfizer; honoraria for lectures/writing from AIUM, GE Healthcare, Bayer, AbbVie, TerSera, consultancy work with Hologic, Chugai, Roche Diagnostics, AIMA, and affiliations with Imagendo, outside the submitted work. Mike Armour receives research funding from various philanthropic donors including the Wilson Foundation, the Victorian Government, Medical Research Future Fund (MRFF), is a scientific advisory board member for Evolv Therapeutics, and is the chair of Endometriosis Australia’s Clinical Advisory Committee, outside the submitted work. Jason Abbott is the Chairman NECST network (MRFF funded), Endometriosis Advisory Group Member to Australian government, Chair of the Gynaecology group for MBS review Federal Government, and Chair of the expert endometriosis working group RANZCOG. He is also a FIGO member of the Menstrual Health and disorders group, on the steering committee for Endometriosis National Action Plan, Co-chair of the CCS for ACSQHC in HMB, Co Editor-in-Chief of Journal of Minimally Invasive Gynecology, Consultant/MAB for Hologic, Bayer, MSD, Stryker, Storz, Allergan, Vifor, Gideon Richter, and the former Medical Director and Chair, Endometriosis Australia, outside the submitted work. D.B. has received travel and expense grants and speaking fees from Myovant Sciences and Guerbet, outside of the submitted work.

Figures

**Figure 1**
Total number of posts per content category.

**Figure 2**
Total number of posts per Educational and Information-Sharing content category.

See this image and copyright information in PMC

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References

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1. Armour M., Sinclair J., Ng C.H.M., Hyman M.S., Lawson K., Smith C.A., Abbott J. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Sci. Rep. 2020;10:16253. doi: 10.1038/s41598-020-73389-2. - DOI - PMC - PubMed
1. O’Hara R., Rowe H., Fisher J. Managing endometriosis: A cross-sectional survey of women in Australia. J. Psychosom. Obstet. Gynaecol. 2022;43:265–272. doi: 10.1080/0167482X.2020.1825374. - DOI - PubMed
1. Leonardi M., Rocha R., Tun-Ismail A., Robledo K., Armour M., Condous G. Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. BJOG Int. J. Obstet. Gynaecol. 2021;128:2084–2090. doi: 10.1111/1471-0528.16865. - DOI - PubMed

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[1] Shafrir A.L., Farland L.V., Shah D.K., Harris H.R., Kvaskoff M., Zondervan K., Missmer S.A. Risk for and consequences of endometriosis: A critical epidemiologic review. Best Pract. Res. Clin. Obstet. Gynecol. 2018;51:1–15. doi: 10.1016/j.bpobgyn.2018.06.001. - DOI - PubMed

[2] Shafrir A.L., Farland L.V., Shah D.K., Harris H.R., Kvaskoff M., Zondervan K., Missmer S.A. Risk for and consequences of endometriosis: A critical epidemiologic review. Best Pract. Res. Clin. Obstet. Gynecol. 2018;51:1–15. doi: 10.1016/j.bpobgyn.2018.06.001. - DOI - PubMed

[3] Rowlands I.J., Abbott J.A., Montgomery G.W., Hockey R., Rogers P., Mishra G.D. Prevalence and incidence of endometriosis in Australian women: A data linkage cohort study. BJOG Int. J. Obstet. Gynaecol. 2021;128:657–665. doi: 10.1111/1471-0528.16447. - DOI - PubMed

[4] Rowlands I.J., Abbott J.A., Montgomery G.W., Hockey R., Rogers P., Mishra G.D. Prevalence and incidence of endometriosis in Australian women: A data linkage cohort study. BJOG Int. J. Obstet. Gynaecol. 2021;128:657–665. doi: 10.1111/1471-0528.16447. - DOI - PubMed

[5] Armour M., Sinclair J., Ng C.H.M., Hyman M.S., Lawson K., Smith C.A., Abbott J. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Sci. Rep. 2020;10:16253. doi: 10.1038/s41598-020-73389-2. - DOI - PMC - PubMed

[6] Armour M., Sinclair J., Ng C.H.M., Hyman M.S., Lawson K., Smith C.A., Abbott J. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Sci. Rep. 2020;10:16253. doi: 10.1038/s41598-020-73389-2. - DOI - PMC - PubMed

[7] O’Hara R., Rowe H., Fisher J. Managing endometriosis: A cross-sectional survey of women in Australia. J. Psychosom. Obstet. Gynaecol. 2022;43:265–272. doi: 10.1080/0167482X.2020.1825374. - DOI - PubMed

[8] O’Hara R., Rowe H., Fisher J. Managing endometriosis: A cross-sectional survey of women in Australia. J. Psychosom. Obstet. Gynaecol. 2022;43:265–272. doi: 10.1080/0167482X.2020.1825374. - DOI - PubMed

[9] Leonardi M., Rocha R., Tun-Ismail A., Robledo K., Armour M., Condous G. Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. BJOG Int. J. Obstet. Gynaecol. 2021;128:2084–2090. doi: 10.1111/1471-0528.16865. - DOI - PubMed

[10] Leonardi M., Rocha R., Tun-Ismail A., Robledo K., Armour M., Condous G. Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. BJOG Int. J. Obstet. Gynaecol. 2021;128:2084–2090. doi: 10.1111/1471-0528.16865. - DOI - PubMed

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Social Media, Endometriosis, and Evidence-Based Information: An Analysis of Instagram Content

Affiliations

Social Media, Endometriosis, and Evidence-Based Information: An Analysis of Instagram Content

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Conflict of interest statement

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