Spina Bifida: Costs and Outcomes Associated with Different Models of Health Care for Adolescents and Young Adults

January 31, 2003

Principle Investigator: Tari Topolski, PhD
Institution: University of Washington
Approximate Year 1 Funding: $291,000.00
RTOI #: 2003-03-02

Children with spina bifida who are cared for at the Children's Hospital and Regional Medical Center (CHRMC) in Seattle, WA, are transitioned to adult health care services when they are no longer eligible for pediatric services. After leaving CHRMC many patients are seen by community health care providers who may be unfamiliar with the special issues associated with spina bifida. Others may be referred to a specialized clinic for adults with spina bifida located at the University of Washington Medical Center. The long-term objectives of this study are: To (1) increase our understanding of the issues related to access to health care and (2) determine the most effective model of health care delivery for persons with spina bifida.

The specific aims of the research proposal are:

  1. To compare the status of young adults followed in an organized program, the Adult Spina Bifida Clinic, to those followed in a community setting two to ten years after leaving organized care in the pediatric setting.
  2. To determine the costs and outcome relationships for medical care provided by standard medical care compared to that provided by the Adult Spina Bifida Clinic while describing access and utilization of each model of care.

The potential subjects will be the cohort of persons with spina bifida in the CHMRC database born between 1977 and 1988 (approximately 700 persons). The study will be a cross-sectional observational study and data will be obtained by questionnaire and from the state Medicaid database.

Since children born with spina bifida cared for at CHMRC are enrolled in a longitudinal database which includes demographics, level of lesion, cognitive status, and functional status, such data will be used to control for baseline differences in subjects. Variables of interest will include: demographics; general health status; the Functional Independence Measure; SF-36; Perceived Quality of Life Scale; the type, number, and severity of secondary conditions; number of health care episodes/visits; duration of acute health episodes; number of days in hospital; costs; consumer and family satisfaction; and current health preference assessments. We plan to conduct multivariate analysis on cost and outcomes measures and use descriptive statistics to describe demographics.