Patient Perceptions of Retinal Detachment Management and Recovery through Social Media

ABSTRACT

Purpose

Social media support groups can provide accessibility to advice and emotional regarding medical topics, such as retinal detachment repair, but this is almost universally provided by laypersons. We sought to determine how topics related to retinal detachment repair are associated with various emotional responses and the spread of misinformation, as identified through an online social media support group.

Methods

Retrospective observational study of the largest Facebook support group for retinal detachment from 03/19/2021 to 07/19/2021. Members of the support group that posted during the study period. Comments were coded by content (Pre-procedural, Peri-procedural Post procedural, Repeat procedures) and participant response (Emotional responses, Asking for medical advice, and Misinformation). Associations between content and responses were examined using Pearson’s chi-squared test, two-sample t-test, and linear regression.

Results

Posts that included written comments from the study period were analyzed. Negative emotional responses appeared in 30% of posts and positive emotional responses were in 16% of posts. Misinformation was more likely to appear in pre-procedure posts (5.3% versus 1.4%, p = .03). Negative emotional responses trended towards being more common in topics related to repeat procedures (40% vs 28%), although this did not reach statistical significance (p = .06).

Conclusions

Surgeons should be aware that patients frequently express negative experiences on this forum, asked for medical advice, even in the post-operative period, and that these posts generated high engagement. Misinformation may be propagated in support groups, though less commonly with regard to post-procedural questions.

KEYWORDS:

• Emotional responses
• retina
• retinal detachment
• social media

ACKNOWLEDGMENTS

Retinal Detachment/and/or Vitrectomy Facebook Support Group Administrator, Amy Saftko provided de identified member comments. Social Media to Improve Retinal Care (Smirc, Incorporated)

DISCLOSURE STATEMENT

No potential conflict of interest was reported by the author(s).

DATA SHARING STATEMENT

De identified data is available upon request.

FINANCIAL SUPPORT

WP was supported by an NIH mentoring award K-24 AI 106822. R.C.R. was supported by the National Eye Institute (NEI) (R01EY030989), Research to Prevent Blindness (RPB), the Beatrice & Reymont Paul Foundation, March Hoops to Beat Blindness, and Leonard G. Miller Endowed Professorship and Ophthalmic Research Fund at the Kellogg Eye Center. Additional support for R.C.R. was provided by Grossman, Elaine Sandman, Marek and Maria Spatz (endowed fund), Greenspon, Dunn, Avers, Boustikakis, Sweiden, and Terauchi research funds. During the time of the study, R.C.R. was supported by the A. Alfred Taubman Medical Research Institute. BKY was supported by a Heed Ophthalmic Foundation Fellowship grant.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/08820538.2023.2168492

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

The research was funded in part by NIH K24 AI 106822 and U01 AI 110397.