Poor disease self-management is a significant issue in pediatric IBD, with up to 88% of adolescent's non adherent to medication. Self-management is a significant concern given that 1) the risk of relapse in IBD is 5.5 times greater in non adherent patients than in adherent patients, 2) the annual costs of health care in non adherent IBD patients are 12.5% higher, and 3) the estimated annual cost of no adherence in US health care is $100-300 billion. We have identified numerous factors that interfere with adolescents'ability to adhere to treatment including treatment burden, forgetting, negative beliefs about treatment efficacy, and lack of parental support/monitoring. Although these barriers are amenable to behavioral intervention, many adolescents lack the self-management skills to overcome them on their own, and clinic-based self- management efforts have proven inadequate. Through our intervention research in pediatric IBD, we have developed and demonstrated the efficacy of a multi-component self-management intervention. However, the proportion of the IBD population that could receive this type of treatment is restricted due to limited access (e.g., lack of available trained clinicians, distance between patient homes and treatment facility). These accessibility barriers could be overcome, however, with the development of a web-based self-management portal designed to assess barriers and deliver interventions. Preliminary portal efficacy has been demonstrated in adult populations. However, the lack of a guiding theoretical framework and a failure to engage patients and clinicians during portal development has led to an underutilization of this technology. Additionally, given that the conceptual framework in which pediatric chronic illness is managed (i.e., collaboration between patients, parents, and clinicians) and issues salient to self-management in adolescence (e.g., treatment responsibility) differ significantly from adults, it would be inappropriate to apply existing adult portals to pediatric patients. Development of the first IBD-specific self-management portal that can be used by key stakeholders would be a critical advancement in this line of research. Adolescents are the ideal consumers of web portals as they are early adopters and frequent users of technology. The proposed project aims to develop and optimize the Self- Management Assistance for Recommended Treatment (SMART) portal to address the self-management needs of patients, parents, and clinicians. We will do this via an iterative process with repeated input from each group of users. This will impact public health by providing an evidence-based resource to a large proportion of patients who otherwise would not receive treatment, thereby reducing health care disparities for families that have limited access to services. Given the health and economic impact of poor self-management in IBD, this study is timely and important, as it has the potential to positively impact IBD health outcomes, and serve as a model for self-management intervention in other pediatric populations.

Public Health Relevance

Although a large number of adolescents with inflammatory bowel disease (IBD) have difficulties managing their illness, access to effective self-management programs is extremely limited. In addition, clinicians'ability to address the self-management needs of their patients is hampered by inadequate resources, time, and training in this specialized area. This study proposes to develop and optimize an innovative, empirically-based self- management web portal to address the self-management needs of underserved patients, parents, and clinicians in the IBD community with the ultimate goal of expanding the portal to additional chronic conditions.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Exploratory/Developmental Grants (R21)
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Behavioral Medicine, Interventions and Outcomes Study Section (BMIO)
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Haverkos, Lynne
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United States
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