Healthcare Self-Management, Executive Functioning, and Social Determinants of Health in Young Adults with Pediatric-Onset Disabilities: a Pilot Study

Abstract

Objective: We examined the associations of executive functioning and social determinants of health with medical self-management skills in transition-age adults (TAA) with pediatric-onset disabilities.

Method: This cross-sectional pilot study included 47 young adults between the ages of 18-28 and their informants (e.g., parents, partners, siblings). Participants were followed by pediatric rehabilitation clinics for acquired brain injury (ABI = 16), neuromuscular disorders (NMD = 22), or spina bifida (SB = 9). Informants completed the Behavior Rating Inventory of Executive Functions - Adult Version, from which we reported the General Executive Composite. To assess medical self-management, young adult participants completed the Transition Readiness Assessment Questionnaire (TRAQ).

Results: Using generalized linear regression with the TRAQ as the dependent measure, better informant-rated executive functioning skills were associated with more favorable ratings of healthcare self-management with a large effect size (β = -0.62, p < .001). With a small effect size, there was also a main effect of participant race and ethnicity (β = 0.27, p = .049). Marginalized identities, specifically identification as of Indigenous and Black races, were associated with poorer ratings of healthcare self-management skills.

Conclusions: Lower executive functioning skills and some marginalized identities are linked to poorer healthcare self-management in this sample of TAA with pediatric-onset disabilities. These findings highlight the value of neuropsychologists in identifying cognitive challenges and implementing targeted interventions in the context of social determinants of health.

Keywords: Acquired brain injury; Independent living skills; Neurocognitive functioning; Neuromuscular disease; Spina bifida; Young adulthood.