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

Abstract

Aim

To examine socioeconomic, condition-related, and neuropsychological predictors of self-management trajectories in adolescents and young adults with spina bifida.

Method

In 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.

Results

Participants (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).

Interpretation

On 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.