Health Literacy Trends and Associations With Transition Readiness in Youth with Spinal Dysraphism

To assess whether health literacy (HL) changes over time are associated with transition readiness among young people with spinal dysraphism (SD), given that coordinating transition from pediatric to adult care for individuals with SD is vital.

We performed a retrospective longitudinal study of prospectively collected patient-reported outcomes from patients> 12 years old between May, 2019 and February, 2024 in a multidisciplinary spina bifida clinic. Our primary exposure was HL, measured with the BRIEF questionnaire. Our primary outcome was transition readiness, assessed with the Transition Readiness Assessment Questionnaire (TRAQ). Linear mixed effects models with repeated measures were used to assess trends in HL over time and their association with TRAQ score at each time point, adjusting for relevant variables and an interaction term between HL and time.

Among 248 patients (baseline median age 15.6 years, 60% with myelomeningocele), median follow-up was 2.6 years. Improved HL was positively associated with time (β = 0.02 [95%CI 0.01-0.03]) and older baseline age (β = 0.12 [95%CI 0.01-0.1]). Older age at baseline and better baseline HL were significantly associated with higher TRAQ score (β = 0.1 [95%CI 0.08-0.12] and β = 0.06 [95%CI 0.04-0.08], respectively). The interaction term between adequate HL and time was significant, suggesting that those with adequate HL had a faster rate of TRAQ improvement over time compared to patients with inadequate HL (β = 0.01 [95%CI 0.004-0.02]).

Among young people with SD, improved HL was associated with time, and those who achieve adequate HL may experience faster rates of improvement in transition readiness over time. Further research is required to establish a causal relationship.