Secondary Conditions and Adaptation in Spina Bifida

January 31, 2003

Principle Investigator: Timothy Brei, MD
Institution: Indiana University School of Medicine
Approximate Year 1 Funding: $288,800.00
RTOI #: 2003-02-01

Adolescents with spina bifida (SB), the second most common cause of disability in children, are an understudied, vulnerable population who are at risk for multiple negative secondary outcomes resulting in tremendous personal and societal costs. To date, the knowledge developed about adolescents with SB has focused on predictor variables in isolation, used small samples, or have used parents as the primary source of data. The aim of this study is to test a model that integrates three domains-neurological severity, neuropsychological deficits, and protective process in the prediction of secondary conditions and adaptation outcomes (i.e., physical health, mental health, social competency, health-related quality of life, and academic achievement).

This multi-site, cross-sectional descriptive study will enroll 140 adolescents with SB, 140 matched peers, and their primary caregiving parent. Data will be collected by interviews and neuropsychological testing.

The impact of SB neurological variables (level of lesion, hydrocephalus status, and neurological complications) is proposed to be mediated by the adolescent's neuropsychological deficits. In addition, protective processes (adolescent resilience, family resourcefulness, perceived health-care adequacy, and demographic characteristics) are proposed to influence neurological and neuropsychological factors on outcomes.

Adolescent resilience variables include decision-making, responsibility, attitude, hope, coping, sexuality beliefs, communication efficacy, and future expectations. Family resourcefulness includes cohesion, satisfaction, level of protection, mastery, and family activity.

Perceived health-care adequacy includes SB needs and family centered care. Demographic characteristics includes age, gender, and SES.

Data analysis will be conducted using the structural equation modeling (SEM) technique. Two phases of the confirmatory approach will be used: First, the validation of measurement models of both exogenous and endogenous latent variables and, second, SEM of the relationship delineated by the study model.

The use of this large sample from multiple sites will allow for testing of study variables and address limitations of previous studies. The proposed study is part of a program of research aimed at producing evidence-based knowledge that leads to more effective interventions.