Sociodemographic Factors and Health-Related, Neuropsychological, and Psychosocial Functioning in Youth With Spina Bifida

Objective: Past research suggests that certain sociodemographic factors may put youth with spina bifida (SB) at risk for poor outcomes. The aims of this study were to examine (a) associations between ten sociodemographic factors and health-related, neuropsychological, and psychosocial functioning among youth with SB,(b) cumulative sociodemographic risk as a predictor of youth outcomes as moderated by age, and (c) SB-related family stress as a mediator of longitudinal associations between cumulative sociodemographic risk and youth outcomes. Method: Participants were youth with SB (N = 140 at Time 1; M-age at Time 1 = 11.43, 53.6% female) recruited as part of a larger, longitudinal study. The study included questionnaire (parent-, teacher-, and youth-report), neuropsychological testing, and medical chart data across three time points, spaced 2 years apart. Results: A subset of the sociodemographic factors and their cumulative risk were associated with study outcomes. Specifically, youth characterized by sociodemographic risk had greater pain and lower academic achievement, but also fewer urinary tract infections and fewer attention and executive function problems. Age did not moderate the association between cumulative risk and outcomes. Cumulative risk predicted lower SB-related family stress, which, in turn, predicted several outcomes. Conclusions: Examining a range of sociodemographic factors is warranted. Sociodemographic risk is linked to poorer outcomes for some risk indicators but similar or better outcomes for others. Results have implications for delivering evidence-based, diversity-sensitive clinical care to youth with SB.