“Just Got Diagnosed; What Worked for You?”: A Mixed-Methods Analysis of Treatment Experiences in the Prolactinoma Subreddit

Abstract

Introduction With improvement in complication and remission rates, recent studies have suggested the viability of transsphenoidal surgery as first-line management for prolactinomas. Reddit, an online forum, allows posters to interact with one another, and discuss symptoms, treatments, and disease courses through specialized forums known as “subreddits.” Given the lack of research comparing patient experience on pharmacotherapy versus surgery, we sought to assess the sentiment of treatment within the “r/Prolactinoma subreddit” community.

Methods A search was done by filtering the r/Prolactinoma subreddit. Posts were sorted by “top” of “all time,” meaning entries with the most engagement throughout the site's history. Welch's t-test was used to analyze treatment type, while sentiment regarding treatment was analyzed using grounded theory qualitative methods.

Results From 189 total entries, 82 were included; 33% (n = 27/82) were posts. Of posters disclosing their treatment, 11% underwent surgery (n = 9/79), while 76% received medication (n = 60/79). The proportion of positive:negative sentiment and level of engagement on posts regarding pharmacotherapy versus surgical treatments were not significantly different (p > 0.05). Qualitative analysis showed themes of changes after medical treatment, immediate changes postsurgery, and online community.

Conclusion Our mixed-methods study found statistically nonsignificant differences in sentiment when comparing Reddit posts from patients who underwent medical and surgical management. Qualitative analysis revealed several themes regarding patients' perceptions of medical and surgical management and the benefits of an online community. The qualitative themes brought to light by this study may serve to inform future studies examining the patient experience with prolactinoma care.

Keywords

prolactinoma - social media - sentiment analysis - reddit

Ethical Approval

This study is an analysis of publicly available information on Reddit and does not qualify as human subjects research.

Authors' Contributions

Conception and design were done by R.D., D.F., S.T., S.C., C.R.R. while data acquisition was done by R.D., S.T., S.C. Analysis and interpretation was completed by R.D., S.T., D.F., S.C., R.N. C.R.R. whereas R.D., S.T., D.F., S.C., C.R.R. drafted the manuscript. Critical revision was performed by R.D., S.T., D.F., S.C., S.P.P., P.M.H., P.D. C.R.R. and C.R.R. is the Guarantor of the work.

Data Availability Statement

Data collected from this study may be made available upon request from the corresponding author. Reddit posts collected are publicly available through the social media platform.

^* These authors should be considered co-first authors.

Publication History

Received: 19 March 2024

Accepted: 29 June 2024

Accepted Manuscript online:
02 July 2024

Article published online:
23 July 2024

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