Spina bifida is a common congenital defect of the spine occurring early in gestation. Since 1998, theprevalence of spina bifida has been significantly reduced in some areas of the US with mandatory fortificationof grains. In Utah, despite mandatory fortification, we have not seen any significant reduction in spina bifidaprevalence. As a result of improved medical care, these children are living longer and have an increased riskfor many health and psychosocial issues. Few studies have been done to understand the quality of life offamilies and their children with spina bifida. More importantly, few population-based studies have been carriedout to provide a complete picture of the impact spina bifida has on infants, toddlers, children, adolescents, andtheir families. Our understanding of the families and their children's needs is critical to minimize theirsecondary disabilities associated with the primary defect, spina bifida. We are well positioned in Utah toparticipate in this project because of our comprehensive statewide population-based surveillance system forspina bifida (Utah Birth Defect Network) and the centralized health care for children with spina bifida (SpinaBifida Program at Primary Children's Medical Center) serving Utah and surrounding states. Utah is also hometo a healthcare agency (Intermountain Healthcare) that owns 48% of the delivery hospitals and the children'stertiary hospital (Primary Children's Medical Center) that provides insurance/medical coverage for four millionin 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 ofthe 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 interventionsaimed at minimizing or preventing these secondary disabilities and improving the quality of life of children withspina bifida.
/RELEVANCE TO PUBLIC HEALTH Due to medical advances, children born with spina bifida are living longer and face many challenges regarding the secondary conditions related to their birth defect. Understanding these challenges and their impact on the health and well-being of the children and their families is important in order to develop appropriate interventions aimed at minimizing or preventing the occurrence of secondary conditions. Findings from this study will be of benefit to all children born with spina bifida and their families in the United States.
