Life after traumatic brain injury: A social media analysis revealing unmet needs.

Résumé

Traumatic brain injury (TBI) and concussion present ongoing challenges in symptom management and care continuity. Traditional clinical methods may overlook key patient concerns during recovery. Social media platforms such as Reddit provide unsolicited, real-world accounts of the TBI experience, offering insights underexplored in clinical research. We conducted a cross-sectional analysis of 2,024 Reddit posts from r/TBI and r/Concussion between January 2020 and May 2025. Posts were analysed using natural language processing (NLP) to identify themes related to symptoms, treatment experiences, healthcare interactions, and follow-up challenges. Statistical analyses examined discussion patterns and symptom co-occurrences. Information gaps were noted in 47.7% of posts, most often involving symptom interpretation (34.6%) and recovery timeline confusion (23.5%). Red flag symptoms, including worsening neurological deficits, were frequently reported without appropriate clinical guidance. Persistent symptoms such as mood changes (41.2%), memory issues (30.4%), and headaches (19.3%) often extended beyond the acute phase. Patients frequently described difficulty accessing appropriate care or specialist consultations. Reddit narratives reveal substantial unmet needs in post-TBI care. Leveraging social media content through NLP offers valuable insights into patient concerns, highlighting the need for improved education, follow-up, and patient centered communication in neurotrauma care.