Opportunities to improve quality of care for children born with spina bifida

Background: Spina bifida (SB) is a complex, serious birth defect, requiring lifelong multidisciplinary healthcare. Annually, about 1,500 infants are born with SB in the U.S. Advances in clinical treatment have improved survival rates and quality of life. This study reviews the current state of SB care using the Institute of Medicine's quality of care framework and identifies areas for improvement in technical excellence for safe and effective care. Methods: A literature review from 2000-2010 was conducted to capture current trends in SB care. Additional information was collected from national and state health care and public health organizations. Results: Three areas for improvement were identified. First, SB care needs more standardized, evidenced-base guidelines. Second, development of evidence-based clinical standards warrants increased collaborative, outcome-based research. Third, enhanced sharing of SB knowledge and data across disciplines could improve progress of research efforts. Conclusions: Opportunities remain to improve quality of care for children with SB. Findings of this literature review support two priorities: (1) to promote the development of standardized, evidence-based clinical care guidelines for SB; and (2) to initiate more collaborative SB research (e.g. across clinical sites and disciplines). Findings also support the use of population-based registries to help identify “best practices” in clinical care, conduct longitudinal analyses, and explore health disparities. Analyses of population-based registry data could inform continued development of evidenced-based clinical guidelines for treatment and care of children with SB.