Secondary Conditions in Arkansas Children with Spina Bifida

January 31, 2004

Principle Investigator: Andrea Hart, PhD
Institution: University of Arkansas
Approximate Year 1 Funding: $271,600.00
RTOI #: 2003-02-04

Arkansas Spinal Cord Commission (ASCC) and Partners for Inclusive Communities (Partners) will develop a survey with input from a panel of health professionals, researchers, and parents. The proposed survey will draw from existing questionnaires in use by Partners and ASCC. These include the 1993 population survey of persons with spina bifida and a health and secondary conditions survey for adults used by Partners in a current CDC-funded research project.

The proposed survey will be pilot-tested on a sample of children and adults with spinal cord injury before being finalized and administered to the participants. The survey will be administered by the ASCC case managers in a face-to-face interview. A qualitative study of selected individuals who have achieved a high degree of success in mobility, weight control, and socialization will also be conducted.

All persons with spina bifida across the state of Arkansas will be surveyed who are ages 10-19 (n=146) in addition to all adults who were ages 10-19 in 1993 (n=141). For both groups, we will determine the prevalence of current secondary conditions using an individually-administered survey which will be checked for reliability by a review of available school and medical records for a subset of participants. The new data, which will include possible factors that may either increase or ameliorate the development of secondary conditions, will be linked to the survey data collected in 1993 to provide analysis of longitudinal data.

The research design enables the use of particularly powerful data analysis techniques because data will be gathered on the entire population of two cohorts of Arkansas children with spina bifida (the cohort currently ages 10-19, in addition to the cohorts ages 10-19 in 1993). This will allow for the statistical comparison of the prevalence of secondary conditions between the 1993 and 2004 cohorts. This population-based survey will also address the patterns of distribution of secondary conditions in Arkansas related to race, ethnicity, or socioeconomic factors.