Volume 6 Supplement 1

52nd Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida

Open Access

Young adults with spina bifida: does a specialized outpatient program make a difference in functional status and quality of life?

  • Vijaya M Vemulakonda1Email author,
  • John F McLaughlin2,
  • William O Walker2,
  • Diana Cardenas3 and
  • Tari Topolski4
Cerebrospinal Fluid Research20096(Suppl 1):S16


Published: 3 February 2009


Patients born with spina bifida have increasingly longer life expectancies. However, little is known of the health outcomes for young adults transitioning to adult health services. We sought to compare the status of young adults followed with a multidisciplinary approach in an Adult Spina Bifida Clinic (ASBC) to those followed in a community setting two to ten years after leaving a pediatric specialty clinic (PSC).

Materials and methods

The cohort included persons with spina bifida born in the Washington area between 1968 and 1988 and enrolled in a longitudinal database. Outcome data included demographics, general functional status, and secondary conditions. The Functional Independence Measure, SF-36, and Perceived Quality of Life Scale were administered. Descriptive statistics were used to summarize demographics. Multivariate analyses were conducted on outcome measures.


Young adults utilizing the ASBC and adolescents utilizing the PSC were significantly more likely to have more severe primary impairments, more prevalent secondary conditions, poorer functional status, and lower quality of life compared to patients in the community. Overall, young adults have more secondary conditions, poorer functional status, and lower quality of life compared to adolescents with similar primary impairments.


Adolescents and young adults who are seen in the community setting tend to have less severe primary and fewer secondary conditions. Regardless of care setting, young adults with spina bifida have poorer functional and quality of life outcomes than adolescents with similar primary conditions. More robust transitioning from pediatric care to an integrated adult care system may alleviate these differences.

Authors’ Affiliations

Division of Pediatric Urology, Children's Hospital and Regional Medical Center
Department of Pediatrics, Children's Hospital and Regional Medical Center
Department of Rehabilitation Medicine, University of Miami
Seattle Quality of Life Group, Department of Health Services, University of Washington


© Vemulakonda et al; licensee BioMed Central Ltd. 2009

This article is published under license to BioMed Central Ltd.