A Concurrent and Longitudinal Examination of a Bio-Neuropsychosocial Model for Predicting Medical Adherence and Responsibility in Youth with Spina Bifida

Objective: The purpose of this multi-source, multi-method study was to examine biological, neuropsychological, and social (i.e., family dynamics and social adjustment) predictors of medical adherence and responsibility in a pediatric spina bifida (SB) sample. Methods: One hundred forty youth with SB (53.6% female; M age = 11.40 at Time 1) and their caregivers participated in two study time points (Time 2 occurred two years after Time 1). Youth and their caregivers completed several questionnaires regarding medical self-management, family functioning, child social adjustment, and child executive functioning. Teachers completed a parallel measure of child executive functioning. Children completed a brief battery of neuropsychological tasks assessing IQ and executive functioning. Observational assessments of family and peer dynamics were also utilized. Results: Multinomial logistic regressions were employed to test predictors of self-management group membership (i.e., adherent/nonadherent and child responsible/not responsible with SB medical tasks; four groups total). Characteristics of more severe SB (e.g., higher spinal lesions and lower gross-motor functioning) related to low child medical responsibility at Time 1 and Time 2. A child’s neuropsychological functioning (e.g., executive dysfunction and low IQ) emerged as the strongest predictors of poor medical adherence and low child responsibility across both time points. Higher levels of family cohesion related to high medical adherence at Time 1, but only when parents maintained responsibility for the regimen. Family stress was a risk factor for poor adherence and limited child responsibility at Time 1, and approached significance at Time 2. Conclusions: Several risk factors emerged as important considerations for medical self-management in youth SB, including disease severity as barrier to child medical responsibility, and family stress and neuropsychological deficits as barriers to adherence and child responsibility with medical management. This study offers ...