Abstract
Introduction While the definitive treatment of Cushing's disease (CD) is transsphenoidal surgery
(TSS), little is known about patients' perceptions of their treatment experience.
Reddit, an online forum, allows users to interact on “subreddits” specific to interests.
We aimed to assess patient sentiments regarding TSS for CD on the Cushing's subreddit.
Methods Cushing's subreddit posts were sorted by “top” of “all time” to evaluate those with
the most engagement throughout the site's history. Posts unrelated to surgical management
of CD were excluded. Descriptive statistics were performed to compare pre- and postoperative
posters. Sentiment analysis was performed using TextBlob, a Python library, and thematic
analysis was done using grounded theory qualitative methods.
Results From 68 entries, 53 (77.9%) were written by individuals who underwent TSS. Of posters
with a history of TSS, many (68%, n = 25/38) reported difficult recovery, but an overwhelming majority (91.3%, n = 42/46) also reported positive long-term outcomes. Posters who had undergone TSS
were more likely to post content with negative sentiment (p = 0.007), often regarding issues with access to the surgery. Thematic analysis revealed
general themes of seeking and sharing advice, healthcare access issues, excitement
for TSS, short-term symptoms postoperatively, and long-term outcomes.
Conclusion This study is the first to utilize Reddit to analyze patient perceptions of TSS for
CD. This analysis suggests that most posters feel positively regarding their long-term
outcome, while negative sentiments are often related to difficulties accessing care.
Further studies should assess access to care for those with CD.
Keywords
sentiment analysis - TSS - Cushing's disease - Reddit