Systematic Review of Self-Management Assessment Tools for Children With Inflammatory Bowel Disease

The relapsing pattern of illness and diverse management strategies for children with inflammatory bowel disease (IBD) may inhibit their opportunities to develop self-management skills. Interventions focused on the development of these skills require population-specific outcome measures. We provide a comprehensive overview of self-management skills assessment tools that are available for children with IBD that target processes and behaviors outlined as beneficial for the development of these skills. Seven health literature databases were searched using terms related to self-management, transition, IBD, Crohn’s disease, ulcerative colitis, and children. Identified studies underwent a process of title and then full text review. Included studies underwent data extraction using a priori quality assessment criteria related to self-management skills, health literacy, suitability for the target population, validity and reliability testing. The searches identified 523 papers, 123 of which underwent full-text review and 10 included in the final analysis. The assessment tools identified showed great diversity in their development approach, content, methodological rigor, and health literacy considerations. The most frequently included self-management skills were related to adherence, communication, attending clinic, and disease/treatment knowledge. None of the tools satisfied the criteria of selection for use in the target population. While many chronic diseases of childhood follow a predictable disease course with established treatment pathways, IBD presents a unique set of challenges. The development of self-management skills is vital for successful disease management, but these skills should be assessed by a tool appropriate for the population and their diverse needs.