Beyond the Clinic: A Social Media Network Analysis of 5466 Posts Reveals the Interconnected Challenges Facing Sarcoma Patients.

Abstract

Objectives: Social media platforms have increasingly been investigated as a source of patient perspectives that may not emerge in clinical settings. This study aimed to explore how disease status, treatment, and the patient experience interconnect for sarcoma patients posting on a major social media platform.

Methods: We conducted a systematic thematic analysis of 5466 posts across 7 health-related subreddits using a framework of 6 major categories: physical symptoms, disease status, treatments, psychosocial impact, support systems, and daily life impact. Theme detection utilized regular expression matching across 27 subthemes, while VADER sentiment analysis assessed emotional valence. The statistical analysis examined theme co-occurrences using Fisher exact tests and sentiment patterns using Mann-Whitney U tests.

Results: Treatment-related discussions dominated the discourse, with chemotherapy (65.6%) and radiation therapy (60.2%) strongly associated with work-related impacts (OR=2.85 and 2.47, respectively; all OR P<0.001). Financial discussions and work-related posts demonstrated the highest user engagement. Disease progression was a critical transition point, demonstrating robust relationships with treatment modalities (chemotherapy: OR=3.12; radiation: OR=4.09), anxiety (OR=2.23), and uncertainty (OR=2.13). Support-seeking behavior (34.9%) was positively associated with medical team interactions (OR=2.16). Physical symptoms exhibited negative sentiment (-0.331±0.154), particularly discussions of weakness (-0.589) and breathing difficulties (-0.308). Hope-related discussions showed more positive sentiment than other psychosocial themes (Cohen d=-0.595, P<0.001).

Conclusions: This network analysis reveals critical intersections between treatment decisions, financial concerns, and work impact within sarcoma care. Integrated support interventions that address both clinical and practical challenges-particularly treatment transitions and financial toxicity-may improve patient care.