Population Assessment of Young Children with Spina Bifida in Utah

University Of Utah, Salt Lake City UT

Investigators

Abstract

PROJECT SUMMARY/ABSTRACT Spina bifida is a common congenital defect of the spine occurring early in gestation. Since 1998, the prevalence of spina bifida has been significantly reduced in some areas of the US with mandatory fortification of grains. In Utah, despite mandatory fortification, we have not seen any significant reduction in spina bifida prevalence. As a result of improved medical care, these children are living longer and have an increased risk for many health and psychosocial issues. Few studies have been done to understand the quality of life of families and their children with spina bifida. More importantly, few population-based studies have been carried out to provide a complete picture of the impact spina bifida has on infants, toddlers, children, adolescents, and their families. Our understanding of the families and their children's needs is critical to minimize their secondary disabilities associated with the primary defect, spina bifida. We are well positioned in Utah to participate in this project because of our comprehensive statewide population-based surveillance system for spina bifida (Utah Birth Defect Network) and the centralized health care for children with spina bifida (Spina Bifida Program at Primary Children's Medical Center) serving Utah and surrounding states. Utah is also home to a healthcare agency (Intermountain Healthcare) that owns 48% of the delivery hospitals and the children's tertiary hospital (Primary Children's Medical Center) that provides insurance/medical coverage for four million in Utah, and the Utah Population Database for linkage of hospital data. Our goal is to develop a longitudinal, population-based cohort of children with spina bifida born in Utah in order to contribute to the understanding of the type and prevalence of secondary conditions impacting their health and well-being. The specific aims of this proposal are: Aim 1: Finalize the protocol for data collection. Aim 2: Recruit and gather data on children with spina bifida and their families. Aim 3: Determine the progression of development and health among children with spina bifida and make recommendations for a future longitudinal study. Such a comprehensive, population-based evaluation is required to develop evidence-based interventions aimed at minimizing or preventing these secondary disabilities and improving the quality of life of children with spina bifida.