237163 Opportunities to improve quality of care for children born with spina bifida

Sunday, October 30, 2011

Elizabeth Radcliff, MSPH , College of Health & Human Services, University of North Carolina at Charlotte, Mooresville, NC
Cynthia Cassell, PhD , National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA
Sarah B. Laditka, PhD , Associate Professor and MHA Program Director, Department of Public Health Sciences, University of North Carolina at Charlotte, Charlotte, NC
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.

Learning Areas:
Provision of health care to the public
Public health or related research

Learning Objectives:
1.Discuss current trends in SB care. 2.Identify research priorities related to the provision of healthcare for children with SB.

Keywords: Birth Defects, Quality of Care

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a pediatic nurse and a doctoral student managing a grant related to children with birth defects.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.