PROJECT SUMMARY/ABSTRACT
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.