Over 90% of children with spina bifida will have a significant urologic impairment that, left untreated, can lead to serious renal complications and significant limitations of activity and participation in life. This occurs regardless of other neurologic impairments such as the level of lesion.

Successful theraputic intervention requires a working knowledge by health professionals of the pathophysiology, effective treatments, normal developmental processes, and effective means of empowering children to master social continence as a means to greatly improve activity and participation in typical societal roles as adults.

Social continence is a significant factor in estimating the quality of life for children with spina bifida and their families. A child who has spina bifida is at risk for teasing, feeling self-conscious about their bodies and physical appearance, and social isolation. As their children struggle with such issues, parents often experience frustration with their child's bladder and bowel mangement programs that may result in tension between themselves and their children or their child's medical team. Siblings may also experience frustration with their brother or sister's bladder or bowel management programs, especially if they attend the same school or share mutual friends. Thus, it is impotant to overall family functioning and quality of life to identify the factors that promote successful bladder and bowel continence programs for children who have spina bifida.

The goal of this project is to add to the body of knowledge about the care of children with spina bifida, and improve the health and well being of these children, by identifying the most effective intervention strategies for preventing and/or managing associated urinary and bowel problems, using a multi-center, multidisciplinary approach.

This study will include two components, a longitudinal retrospective study and a cross-sectional observational study using both quantitative and qualitative methods to assess the effectiveness of selected bowel and bladder interventions on both the physiologic outcomes, and quality of life measures.

Project partners include the Child Development and Rehabilitation Center at Orgegon Health & Science University, Madigan Army Medical Center in Tacoma, WA, the University of Washington and Childrens Hospital ad Regional Medical Center in Seattle, WA.