This subproject is one of many research subprojects utilizing theresources provided by a Center grant funded by NIH/NCRR. The subproject andinvestigator (PI) may have received primary funding from another NIH source,and thus could be represented in other CRISP entries. The institution listed isfor the Center, which is not necessarily the institution for the investigator.Background: Spina bifida (SB) remains a common birth defect in the United states, affecting approximately one in three thousand live births. Even with medical and surgical advances made in the treatment of SB over the past 3 decades, management of neurogenic bladder and bowel remains a major challenge. A significant proportion of individuals with SB fail to ever achieve bladder and bowel continence. Many adults with SB consider bowel and bladder incontinence to be their most significant problem medically, financially, and socially. The untimely embarrassing accidents and odor associated with incontinence negatively impacts interactions in academic, work and social environments. Medical complicatons of neurogenic bladder and bowel include urinary tract infections, skin breakdown, and bowel impaction. There are still individuals with SB who develop chronic renal insuffiency and eventually kidney failure.
Specific Aims : The overall goal of this research project is to systematically define and describe the physiological, behavioral and environmental variables that moderate interdisciplinary clinical practices for management of neurogenic bladder and bowel in children with SB. This study also aims to assess whether a state-of-the-art behavioral intervention in school-age and adolescent children with SB can supplement current bowel and bladder usual care practices to decrease medical complications and improve bowel and bladder continence, social relationships, and quality of life.Design: Both retrospective clinical data and prospective experimental data will be obtained and analyzed to address study aims. A retrospective chart review study will be done on about 100 individuals who were seen through the Kennedy Krieger Institute Spina Bifida Center in the past 3 years. The prospective study will utilize a two group experimental design with study participants randomized to an intervention group and a control group, with plans to enroll 30 subjects per group. The intervention group will receive Usual Care + Behavioral Intervention Protocol and the control group will receive Usual Care.Study Population: Study subjects will be individuals with spina bifida ages 5 to 18 years old. Subjects will be recruited through the KKI Spina Bifida Center, Johns Hopkins Pediatric Urology Clinic and from the surrounding area through the Chesapeake-Potomac Spina Bifida Association.Behavioral Intervention: The intervention group will participate in an 8-week behavioral intervention. A tool assessing barriers to medical adherence will be developed using our experience and findings of the retrospective study. Each subject in the intervention group will have an individualized assessment and development of a behavioral plan. Intervention will include antecedent management (a written daily schedule), pager prompting for medication and CIC, a behavioral incentive (positive reinforcement) program, coping skills training, and behavioral support therapy in clinic and by phone.Measurement: Measures will include a standard interview about medical and surgical history, current medical regimenand barriers to adherence. Baseline results of creatinine, BUN, GFR, kidney and bladder ultrasounds, and VCUG will be documented. Urodyanamic studies will be done at study entry and at one year. Measurement tools will include ratings of bladder and bowel continence, health-related quality of life, medical adherence, self-perception, and social support.
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