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Systematic Review of Self-Management Assessment Tools for Children With Inflammatory Bowel Disease
Angharad Vernon-Roberts1, Emma Rouse2, Richard B Gearry2
1From the Department of Paediatrics, Otago University, Christchurch, New Zealand.
Insights
Children with inflammatory bowel disease (IBD) need specific tools to assess self-management skills. Current assessment tools are not suitable for this population, highlighting a gap in care for pediatric IBD patients.
Area of Science:
- Pediatric Gastroenterology
- Chronic Disease Management
- Health Outcomes Research
Background:
- Children with inflammatory bowel disease (IBD) face challenges in developing self-management skills due to the relapsing nature of their illness and varied treatment approaches.
- Effective interventions for enhancing self-management in pediatric IBD require validated, population-specific outcome measures.
- Existing assessment tools for self-management skills may not adequately address the unique needs of children with IBD.
Purpose of the Study:
- To conduct a comprehensive review of available self-management skills assessment tools for children with IBD.
- To identify tools targeting key self-management processes and behaviors crucial for pediatric IBD patients.
- To evaluate the suitability, validity, and reliability of existing assessment tools for this specific population.
Main Methods:
- A systematic literature search was performed across seven health databases using keywords related to self-management, transition, IBD, and pediatric populations.
- Studies were screened through title and full-text review, with data extraction focusing on quality assessment criteria for self-management skills, health literacy, and population suitability.
- Ten studies met the inclusion criteria for final analysis after an initial identification of 523 papers.
Main Results:
- The review identified a diverse range of self-management assessment tools with varying development approaches, content, rigor, and health literacy considerations.
- Commonly assessed self-management skills included adherence, communication, clinic attendance, and disease/treatment knowledge.
- Critically, none of the reviewed assessment tools met the selection criteria for effective use in the pediatric IBD population.
Conclusions:
- Inflammatory bowel disease presents unique challenges for self-management skill development in children compared to other chronic childhood diseases.
- There is a significant need for the development and validation of assessment tools specifically designed for children with IBD.
- Appropriate assessment tools are vital for supporting successful disease management and addressing the diverse needs of pediatric IBD patients.
Abstract:
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.
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