Contextual predictors of self‐management and independence trajectories in adolescents and young adults with spina bifida

Abstract

AbstractAimTo examine socioeconomic, condition‐related, and neuropsychological predictors of self‐management trajectories in adolescents and young adults with spina bifida.MethodIn this longitudinal study, participants completed the Adolescent/Young Adult Self‐Management and Independence Scale interview. Socioeconomic status (SES), shunt status, lesion level, and executive functioning were assessed. Growth in self‐management was estimated using linear mixed‐effects models.ResultsParticipants (n = 99) were aged 18 to 27 years. Approximately half (52.5%) were female and White; 15.2% were Black; and 32.3% Hispanic or Latino. Although none of the predictors were associated with growth in self‐management from ages 18 to 27 years (p > 0.05), several factors were associated with the intercept at age 18 years for total self‐management. Higher SES at baseline predicted a higher total self‐management score at age 18 years (b = 0.03, standard error [SE] = 0.01; p < 0.001). On average, participants at age 18 years with a shunt scored lower than those without a shunt (b = −0.90, SE = 0.32; p = 0.01); those with a thoracic lesion scored lower than those with lower lesion levels (lumbar: b = −1.22, SE = 0.34; sacral: b = −1.20, SE = 0.36; p = 0.001 for both). Better parent‐reported and teacher‐reported executive functions predicted higher total self‐management (metacognitive: b = −0.03, SE = 0.01; behavioral regulation: b = −0.04, SE = 0.01; p < 0.05 for both).InterpretationOn average, all participants improved in self‐management over time. Additionally, baseline superiority in self‐management for adolescents and young adults without a shunt, less severe lesions, better executive functions, and higher SES persisted over time.What this paper adds Higher socioeconomic status at baseline predicted higher self‐management scores at age 18 years. Participants with a shunt scored lower than those without a shunt. Participants with a thoracic lesion scored lower than those with other, less severe lesions. Better parent‐reported and teacher‐reported executive functions predicted higher self‐management scores at age 18 years. Growth in self‐management was not moderated by socioeconomic, condition‐related, or neuropsychological variables.