“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.

Publikationsverlauf

Eingereicht: 19. März 2024

Angenommen: 29. Juni 2024

Accepted Manuscript online:
02. Juli 2024

Artikel online veröffentlicht:
23. Juli 2024

• References

• 1 Yatavelli RKR, Bhusal K. Prolactinoma. In: StatPearls. [Updated July 31, 2023]. Treasure Island (FL): StatPearls Publishing; 2024. . Accessed July 4, 2024 at: https://www.ncbi.nlm.nih.gov/books/NBK459347/
• 2 Chanson P, Maiter D. The epidemiology, diagnosis and treatment of Prolactinomas: the old and the new. Best Pract Res Clin Endocrinol Metab 2019; 33 (02) 101290
• 3 Rutkowski MJ, Aghi MK. Medical versus surgical treatment of prolactinomas: an analysis of treatment outcomes. Expert Rev Endocrinol Metab 2018; 13 (01) 25-33
• 4 De Sousa SMC. Dopamine agonist therapy for prolactinomas: do we need to rethink the place of surgery in prolactinoma management?. Endocr Oncol 2022; 2 (01) R31-R50
• 5 Castinetti F, Albarel F, Amodru V. et al. The risks of medical treatment of prolactinoma. Ann Endocrinol (Paris) 2021; 82 (01) 15-19
• 6 Business of Apps. “Reddit Revenue and Usage Statistics (2024).” Accessed February 20, 2024 at: www.businessofapps.com/data/reddit-statistics/
• 7 Silberman WR, Record RA. We post it, U Reddit: exploring the potential of reddit for health interventions targeting college populations. J Health Commun 2021; 26 (06) 381-390
• 8 Park A, Conway M. Tracking health related discussions on reddit for public health applications. AMIA Annu Symp Proc 2018; 2017: 1362-1371
• 9 Reddit. Medical Questions. Accessed February 25, 2024 at: www.reddit.com/r/AskDocs/
• 10 Yarris LM, Chan TM, Gottlieb M, Juve AM. Finding your people in the digital age: virtual communities of practice to promote education scholarship. J Grad Med Educ 2019; 11 (01) 1-5
• 11 Microsoft Corporation. Microsoft Excel. 2018 . Accessed July 4, 2024 at: https://office.microsoft.com/excel
• 12 R Core Team. R: A language and environment for statistical computing. Published online 2022. Accessed July 4, 2024 at: https://www.R-project.org/
• 13 Heinzen E, Sinnwell J, Atkinson E, Gunderson T, Dougherty G. arsenal: An Arsenal of 'R' Functions for Large-Scale Statistical Summaries. 2021 . R package version 3.6.3
• 14 Wickham H. ggplot2: Elegant Graphics for Data Analysis. New York: Springer-Verlag; 2016
• 15 Centrum voor Wiskunde en Informatica (CWI). G. van Rossum, Python tutorial, Technical Report CS-R9526. 1995
• 16 Loria S. textblob Documentation. Release 0.15, 2. 2018
• 17 Charmaz K. Constructing Grounded Theory. Sage Publications; 2006
• 18 O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med 2014; 89 (09) 1245-1251
• 19 Fusch P, Ness L. Are we there yet? Data saturation in qualitative research. Qual Rep 2015; 20 (09) 1408-1416
• 20 Ioachimescu AG, Fleseriu M, Hoffman AR, Vaughan Iii TB, Katznelson L. Psychological effects of dopamine agonist treatment in patients with hyperprolactinemia and prolactin-secreting adenomas. Eur J Endocrinol 2019; 180 (01) 31-40
• 21 Swift L. Online communities of practice and their role in educational development: a systematic appraisal. Community Pract 2014; 87 (04) 28-31
• 22 Li LC, Grimshaw JM, Nielsen C, Judd M, Coyte PC, Graham ID. Evolution of Wenger's concept of community of practice. Implement Sci 2009; 4: 11
• 23 Aveling EL, Martin G, Armstrong N, Banerjee J, Dixon-Woods M. Quality improvement through clinical communities: eight lessons for practice. J Health Organ Manag 2012; 26 (02) 158-174
• 24 Wenger E.. Communities of Practice and Social Learning Systems. Organization 2000; 7 (02) 225-246 Accessed February 5, 2024 at: https://doi.org/10.1177/135050840072002