Online Discourse of Deep Brain Stimulation for Movement Disorders: A Content Analysis of Reddit

As patients seek health information online, platforms such as Reddit may offer insight into common questions and claims regarding deep brain stimulation (DBS). We evaluate Reddit to identify the types of questions users ask and the commentary they share, which may influence ways DBS is understood by patients and caregivers using Reddit as a health information space.

We performed a qualitative analysis of Reddit posts from targeted subreddit communities. Python Reddit API Wrapper was used for data extraction. Posts were categorized by user perspective (eg, patient, provider, and family/friend) and DBS relationship (eg, after, expecting, and considering). Content was thematically coded into topics and subtopics, classified as either question or commentary, and analyzed for tone.

A total of 2176 posts were included: 556 were questions and 1620 shared experiences or information. Discussions primarily centered on amount of symptom relief (n = 603), surgical preparation and recovery (n = 176), candidacy (n = 183), surgical risks (n = 169), and timing of relief (n = 114). Topic distribution was similar across questions and commentary. Of inquiry posts with an identifiable user perspective (n = 375), most were posted by patients (61.7%), followed by friends/family (37.7%), and most often in a neutral tone (73.0%). Commentary showed more tone variation, with a positive tone toward the amount of symptom relief (65.2%), typically based on personal experience, and negative tone toward surgical risks and adverse events (55.5%), often shared on behalf of family/friends.

Our analysis identified areas in which educational efforts may be directed on social media. In addition, Reddit discussions may overrepresent significant symptom relief or adverse surgical events, potentially shaping skewed perspectives of DBS outcomes. As a source of questions and shared experiences, Reddit offers insight into patient perspectives and serves as a tool to improve patient engagement and education.