Bowel and Bladder Continence Among Children with Spina Bifida: A Prospective Study

The lack of effective bladder and/or bowel control is a significant barrier to the normal social and emotional development of children and adolescents with Spina Bifida. The study proposed in this application will employ a standard, systematic protocol for assessing continence, bowel/bladder regimen performance, regimen adherence, and specific barriers to adherence. This protocol will result in the individually tailored use of a standard approach to continence training including:

1. Behavioral skills training (e.g., clean intermittent catherization (CIC), toilet schedule, medication and dietary regimen management) and timed toileting.
2. An individually programmed Medical Digital Assistant (pager system) for organizing and prompting critical bowel/bladder management and other medical self-care tasks.

The specific aims of the study are:

1. To determine the effects of a behavioral intervention protocol implemented to identify and modify barriers to neurogenic bowel/bladder management adherence for individuals with spina bifida.
2. To evaluate the effects of the behavioral intervention on adherence with the prescribed medical regimen.
3. To determine if a behavioral intervention can have a significant impact on measures of continence, quality of life, and secondary medical complications related to neurogenic bowel and bladder.

Hypothesis I: The provision of a state-of-the-art Behavioral Intervention Protocol for assessing and modifying barriers to medical regimen adherence will significantly increase rates of partial and complete continence in children with SB compared to a Usual Care control group.

Hypothesis II: The provision of a state-of-the-art Behavioral Intervention Protocol for assessing and modifying barriers to medical regimen adherence will significantly increase health-related quality of life in children with SB compared to a Usual Care control group.