Medical Insights from Posts About Irritable Bowel Syndrome by Adolescent Patients and Their Parents: Topic Modeling and Social Network Analysis

Background Adolescents with irritable bowel syndrome (IBS) are increasingly seeking and sharing information about their symptoms in web-based health care forums. Their posts and those from their parents contain critical insights that can be used by patients, physicians, and caregivers to manage IBS symptoms. Objective The aim of this study is to examine the posts from adolescent patients and their parents in a health forum, IBS Group, to better understand the key challenges, concerns, and issues of interest to young patients with IBS and their caregivers. Methods Using topic modeling and social network analysis, in this study, we analyzed all the messages (over 750 topics and 3400 replies) posted on the IBS Group forum from 2010-2019 by adolescents with IBS aged 13-17 years and parents having children with IBS. We first detected 6 major topics in the posts by adolescent patients and parents on teenagers’ IBS symptoms and the interaction between the topics. Social network analysis was then performed to gain insights into the nature of web-based interaction patterns among patients and caregivers. Results Using the Latent Dirichlet Allocation algorithm and a latent Dirichlet allocation visualization tool, this study revealed 6 leading topics of concern in adolescents with IBS: school life, treatment or diet, symptoms, boys’ ties to doctors, social or friend issues, and girls’ ties to doctors. The top 6 topics in the parents’ discussions were school life, girls’ issues, boys’ issues, diet choice, symptoms, and stress. The analyses show that the adolescent patients themselves are most concerned about the effect of IBS on their everyday activities and social lives. For parents having daughters with IBS, their top concerns were related to the girls’ school performance and how much help they received at school. For their sons, the parents were more concerned about the pain and suffering that their sons had to endure. Both parents and adolescents gained social support from the web-based platform. Topic modeling shows that IBS affects teenagers the most in the areas of pain and school life. Furthermore, the issues raised by parents suggest that girls are bothered more by school performance over pain, whereas boys show exactly the opposite: pain is of greater concern than school performance. Conclusions This study represents the first attempt to leverage both machine learning approaches and social network analysis to identify top IBS concerns from the perspectives of adolescent patients and caregivers in the same health forum. Young patients with IBS must face the challenges of social influences and anxiety associated with this health disorder in addition to physical pain and other symptoms. Boys and girls are affected differently by pain and school performance and view the IBS impacts differently from the parents.