Insights from r/CleftLip: Patient Experiences and Advice

Online community forums, like Reddit, are increasing in use by cleft patients and families as both an avenue for support and a source of medical information. This study seeks to leverage Natural Language Processing (NLP) tools to characterize the nature and sentiment of the online discussion regarding clefts, providing treatment teams with improved anticipation and focus on the leading patient and family concerns.

Top, "all time," original posts with an "advice" flair from the r/cleftlip subreddit were analyzed. Sentiment analysis was performed using NLP to determine the overall tone of each post (positive, negative, neutral). Sentiments assigned were given a confidence score from 0 to 1, where scores closer to 1 represented a higher confidence. Then, line-by-line coding was done by 2 researchers to determine prominent themes and subthemes.

The text of 141 original top posts was allocated and analyzed during the specified period. In all, 30.5% of posts had overall positive sentiments, 46.1% negative, and 23.4% neutral. Nine themes were identified: (1) advice on procedures to improve aesthetics (21.3%), (2) issues with self-esteem (21.3%), (3) seeking support (14.9%), (4) problems with speech (10.6%), (5) surgeon recommendations (9.2%), (6) advice on nutrition (6.4%), (7) breathing issues (6.4%), (8) dental problems (6.4%), and (9)insurance issues or financial stress (3.6%). Subthemes were further identified within the "issues with self-esteem," "advice on procedures to improve aesthetics," and "seeking support" categories.

Surgeon and cleft provider awareness of patient sentiments and questions in online forums will allow for improved anticipation of patient counseling and advice concerns, leading to enhanced, contemporary patient-centric care.