Effectiveness of Bowel and Bladder Techniques in Children with Spina Bifida

PI: Robert Jacobs, MD, MPH, Co PI:Stacey Mizokawa, PhD, Co PI:Ann Neville-Jan, PhD, OTR/L (2005-2008)

Urinary incontinence, constipation and bowel incontinence are nearly universal in individuals with spina bifida. Left untreated, incontinence leads to significant limitations of activity and participation in life. Achievement of bowel and bladder continence enables full participation in typical vocations and avocations, and significantly affects self-esteem and quality of life.

This study, conceptually guided by the International Classification of Function, Disability and Health (ICF), 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 physiologic outcomes and quality of life measures. Data will be gathered through chart reviews, through a preexisting longitudinal database, and through child and parent surveys and child, parent and practitioner focus groups.

The objectives of the project are as follows:

1. Identify commonly used intervention strategies for promoting bowel and bladder continence in children, ages 5-12 years, across three large, geographically diverse centers and a military health facility caring for children with spina bifida.
2. Evaluate reliable and valid outcomes using both physiologic (body structure and function) as well as quality of life (social participation and environment) measures, in a socio-economically and racically-diverse population.
3. Determine the most effective intervention strategies by:
   1. Assessing the effects of various intervention strategies on selected body structure and function measures using quantitative methods.
   2. Assessing the effects of various intervention strategies on selected social participation and environment measures using quantitative and qualitative methods.

The length of the project is three years. The first six months of the project will be spent obtaining Institutional Review Board (IRB) approval from participating organizations, finalizing the research design, developing recruitment and other project materials, and planning for surveys and focus groups. The next 18 months of the project will be spent conducting the research, including conducting chart reviews for physiologic outcomes, distributing parent surveys and conducting focus groups to collect qualitative and quantitative data. The final 12 months will be utilized to complete data collection, conduct the data analysis, and develop presentations, reports and papers in order to disseminate the results.

PARTICIPATING INSTITUTIONS & CROSS DISCIPLINARY PARTNERS:

University of Southern California (USC), Division of Occupational Science & Occupational Therapy (OS & OT) at the School of Dentistry; University Center for Excellence in Developmental Disabilities (UCEDD), Leadership Education in Neurodevelopmental and Related Disorders (LEND), Childrens Hospital Los Angeles (CHLA)

• PI: Robert Jacobs, MD, MPH (General Pediatrics)
• Co PI: Stacey Mizokawa, PhD (Psychologist)
• Co PI: Ann Neville-Jan, PhD, OTR/L (Occupational Therapist)
• Project Director: Kathryn Smith, RN, MN (Nurse)

University of Washington Leadership Education in Neurodevelopmental and Related Disorders (LEND), Center on Human Development and Disability (CHDD), and Children’s Hospital and Regional Medical Center (CHRMC), Seattle and Madigan Army Medical Center (MAMC), Tacoma, WA

• PI: William Walker, MD (Pediatrics)
• Co PI: Brian Dudgeon, PhD, OTR (Occupational Therapist)
• Co PI: Richard Grady, MD (Urologist)

Child Development and Rehabilitation Center (CDRC), Doernbecher Children's Hospital (DCH), Oregon Health and Science University, Portland, OR

• PI: Mark Merkens, MD (Pediatrics)
• Co PI: Kurt Freeman, PhD (Psychologist)
• Co-PI: Liz Adams, PhD, (Nutritionist, Epidemiologist
• Co-PI: Peter Blasco, MD, (Developmental Pediatrician)