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Insights from r/CleftLip: Patient Experiences and Advice.
Ashley Shin1, Riley Shin2, Nicholas S Hernandez3
1Department of Plastic and Reconstructive Surgery, Baylor Scott & White Medical Center, Temple, TX.
The Journal of Craniofacial Surgery
|January 20, 2026
Summary
Online cleft patient forums reveal key concerns, with negative sentiment often linked to self-esteem and aesthetic procedures. Understanding these discussions can improve patient-centered care.
Area of Science:
- Medical Informatics
- Natural Language Processing
- Patient-Reported Outcomes
Background:
- Online communities like Reddit are increasingly used by cleft patients and families for support and medical information.
- This highlights the need to understand online patient discussions to inform healthcare providers.
Purpose of the Study:
- To characterize the nature and sentiment of online discussions about cleft lip and palate.
- To identify leading patient and family concerns using Natural Language Processing (NLP).
Main Methods:
- Analysis of top "advice" posts from the r/cleftlip subreddit.
- Sentiment analysis using NLP to classify post tone (positive, negative, neutral).
- Line-by-line coding by researchers to identify prominent themes and subthemes.
Main Results:
- 141 posts analyzed; 46.1% negative, 30.5% positive, 23.4% neutral sentiment.
- Top themes: aesthetic procedures, self-esteem issues, seeking support, speech problems, surgeon recommendations.
- Subthemes identified within self-esteem, aesthetics, and support-seeking categories.
Conclusions:
- Awareness of online patient sentiments and concerns can enhance counseling and advice.
- This understanding supports improved, contemporary, patient-centric cleft care.
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