Symptom Clusters and Self-Management in Adolescents with Inflammatory Bowel Disease

Abstract

Inflammatory bowel disease (IBD) encompasses a range of chronic conditions, including Crohn’s disease and ulcerative colitis, that cause intestinal inflammation and wide-ranging, debilitating symptoms. Adolescents and young adults represent the peak age group diagnosed with IBD. For individuals with IBD, engaging in effective disease self-management and symptom management is crucial to supporting quality of life. However, youth are often ill-equipped to handle the challenges of managing a chronic condition in the context of the typical developmental challenges of adolescence and young adulthood. This dissertation explored self-management challenges and symptoms in adolescents and young adults with IBD. First, an integrative review of the literature on symptom clusters in individuals with IBD was conducted. Results revealed that symptom clusters remain an understudied phenomenon in IBD research, illuminating a gap in current understanding of the symptom experience of individuals with IBD. Second, the self-management challenges of adolescents with IBD were explored in a thematic analysis of 83 posts made in an online IBD support community. Six emerging themes about self-management challenges were identified: Desire for Normalcy; Dietary Changes; Education and Career; Healthcare System; Relationships with Others; and Symptoms and Complications. Results underscored the ways in which IBD self-management challenges permeate every aspect of life for adolescents living with the condition. Finally, a cross-sectional survey of symptoms and self-management was conducted in 105 adolescents 13-17 years old with IBD. Through latent class analysis, three symptom cluster profiles were identified: a high symptom burden profile, a low symptom burden profile, and a low energy profile. Regression analysis revealed significant demographic and self-management predictors of symptom profile membership. The results of these studies will guide future research to develop and test theoretically grounded, tailored self-management interventions aimed at promoting effective symptom management and enhancing quality of life in adolescents with IBD.