The lived experience of social anxiety disorder: A conceptual model focused on adolescents and young adults based on published literature and social media listening.

Social anxiety disorder (SAD) affects up to 1 in 8 individuals over their lifetime and is characterized by an intense fear of social situations involving unfamiliar people or possible scrutiny. This retrospective observational study reviewed published literature from PubMed and analyzed data from Reddit using social media listening (SML) to understand the lived experience of individuals with SAD. SML offers a complement to traditional methods such as semi-structured interviews, particularly for individuals for whom interacting with strangers is challenging. A stepwise analysis, aligned with US Food and Drug Administration Patient-Focused Drug Development guidelines, was performed to develop a conceptual model for SAD focused on adolescents and young adults. A conceptual model provides a visual overview of the interrelationships between disease-related symptoms and their impact from patients' perspective. Natural language processing techniques and machine learning approaches were employed to extract symptoms and impacts from SML posts. After a targeted literature search, eleven qualitative research publications and 535,544 posts from 118,040 Reddit users were included. Clinical and patient experts then confirmed the content in the conceptual model covering three key symptom domains (physical, negative automatic thoughts, and emotions) and two impact domains (social functioning and occupational/educational functioning). This study captures the value of SML by eliciting spontaneous insights that may not emerge in traditional approaches and proposes a comprehensive conceptual model to support future research and the optimization of Clinical Outcome Assessments in SAD clinical trials.