Optimal self-management of a chronic illness results in minimizing its negative impact on life. Thus, it includes managing its effects on life as well as medical self-management. Yet self-management interventions typically focus only on medical management. This is a problem because 1) up to 35% of youth with IBD experience clinically significant difficulty in other areas of self-management, particularly in managing the social and overall impact of the disease on life (e.g., quality of life), even when the disease is inactive; and 2) these problems are predictive of occupational, social and emotional problems in adulthood. In IBD, $5.5 billion is lost each year in workforce nonparticipation alone. This suggests youth with IBD are at continued risk for inadequate self- management of the effect of IBD on their lives as adults. The objective of this study is to address these areas of impairment that persist even during remission with a multifaceted peer mentoring program. Mentoring programs are common in the general population and are well-known to improve a plethora of outcomes, including social, emotional and academic outcomes, all of which are necessary for successfully managing life with IBD. Peer mentoring programs in particular offer innovative advantages over other forms of intervention for youth with IBD: 1) A peer mentor is a role model who normalizes and de-stigmatizes the disease in a way that a professional cannot, and 2) With a peer mentor, self-management activities take place within the community, promoting generalization and independence in ways that traditional interventions do not. Despite widespread enthusiasm for peer mentoring in pediatric chronic illness, such programs have received little empirical attention. Our mentoring program was developed via focus groups, an NIH-funded pilot study, national mentoring resources, and the PI's 10 years of experience with Big Brothers Big Sisters. It consists of year-long, 1:1 mentee-mentor relationships with group self-management activities, a private online community, and a parent support component. Our pilot study demonstrates feasibility, satisfaction, and improvement in the areas of quality of life (QOL), functioning in typical life activities, IBD self-efficacy, and rates of remission. In the proposed study, 200 youth and their parents, and 100 mentors will be enrolled in this multisite, randomized controlled clinical trial comparing those in the Mentoring Program to an Educational Activity comparison group in the areas of QOL, functioning in typical life activities, and disease outcomes (e.g., biomarker and standardized indices). Mechanisms that contribute to outcomes, including perceived stigma, disease-related self-efficacy, coping and disease uncertainty will be examined as well. A mentoring program is an innovative self-management intervention with broad appeal and applicability across chronic illnesses that can help youth manage areas of impairment that persist even with inactive disease, and potentially into adulthood.

Public Health Relevance

Managing chronic illness is one of the most important challenges facing public health, as poor management can result in significant medical costs. This study evaluates a peer mentoring program to improve self- management in youth with inflammatory bowel disease so that they can learn to live with a challenging medical condition from a similar peer.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Huss, Karen
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Nationwide Children's Hospital
United States
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