Inflammatory Bowel Diseases (IBD) are chronic and unpredictable disorders of the gastrointestinal tract associated with significant morbidity, intrusive medical and surgical interventions, and disability. Incidence of IBD, especially among children and adolescents is markedly increasing. Biological indicators of IBD do not adequately account for nor predict IBD severity, course, or treatment response. There is a strong association between IBD and psychosocial distress. Adolescence is associated with poor medical adherence and high rates of health risk behaviors that can lead to negative medical outcomes over time. The proposed project is designed to establish a multicenter behavioral health registry of newly diagnosed children and adolescents with IBD. The unique focus of the Pediatric IBD Behavioral Health Registry will be on measuring psychosocial and behavioral factors, such as medication adherence, and assessing the influence of such factors on IBD status and disease course. This Registry will be integrated with the Pediatric IBD Consortium Registry that collects complementary data on biomedical factors in IBD. We will evaluate multiple methods of assessing patient and family psychosocial and behavioral functioning which may affect IBD status and progression. Adherence to medications will be assessed through electronic monitoring, biological specimens, and self-report. We will administer the protocol to 3 cohorts of participants who will be co- registered in the biomedically-focused Pediatric IBD Consortium Registry. All participants will be followed for 6 months. In our own IBD center we will enroll 40 newly-diagnosed patients aged 8:0-17:6 years old and 40 previously-diagnosed patients who will be matched to the newly-diagnosed patients on age and gender but who will be more than one year from the time of diagnosis. Finally, we will export and pilot the protocol with a multi-center pilot cohort of 10 newly-diagnosed patients at two collaborating IBD Centers;these subjects will serve to demonstrate that the Pediatric IBD Behavioral Health Registry can be established across multiple sites. Public Health Implications: Prevalence of Pediatric IBD is rapidly increasing. This project will enhance our capacity to study the interface of biomedical and behavioral aspects of IBD and will lead to the development of improved medical and behavioral interventions.
Inflammatory Bowel Diseases (IBD) are chronic and unpredictable disorders of the gastrointestinal tract associated with significant morbidity, intrusive medical and surgical interventions, and disability. Incidence of IBD, especially among children and adolescents is markedly increasing. There is a strong association between IBD and psychosocial distress. Adolescence is associated with poor medical adherence and high rates of health risk behaviors that can lead to negative medical outcomes over time. The current application proposes to establish the first multi-center, prospective behavioral health registry of newly-diagnosed children and adolescents with IBD. The unique focus of the Pediatric IBD Behavioral Health Registry will be on measuring psychosocial and behavioral factors, such as medication adherence, and assessing the influence of such factors on IBD status and disease course. This Registry will collaborate with the Pediatric IBD Consortium Registry that focuses on biological and medical factors. The long-term goal of the Pediatric IBD Behavioral Health Registry is to identify biological and behavioral markers of pediatric IBD status, disease course, and medical treatment outcome. This project will enhance our capacity to study the interface of biomedical and behavioral aspects of IBD and will lead to the development of improved medical and behavioral interventions.
| Reed-Knight, Bonney; Lobato, Debra; Hagin, Sarah et al. (2014) Stability of Emotional and Behavioral Functioning in Youth with Inflammatory Bowel Disease. Child Health Care 43:151-168 |
| Reed-Knight, Bonney; Lobato, Debra; Hagin, Sarah et al. (2014) Depressive symptoms in youth with inflammatory bowel disease compared with a community sample. Inflamm Bowel Dis 20:614-21 |
| LeLeiko, Neal S; Lobato, Debra; Hagin, Sarah et al. (2013) Rates and predictors of oral medication adherence in pediatric patients with IBD. Inflamm Bowel Dis 19:832-9 |
| LeLeiko, Neal S; Lobato, Debra; Hagin, Sarah et al. (2013) 6-Thioguanine levels in pediatric IBD patients: adherence is more important than dose. Inflamm Bowel Dis 19:2652-8 |
| Morgan, Xochitl C; Tickle, Timothy L; Sokol, Harry et al. (2012) Dysfunction of the intestinal microbiome in inflammatory bowel disease and treatment. Genome Biol 13:R79 |
