Background: Health literacy has previously been demonstrated to be significantly associated with transition readiness among young people with spina bifida (SB). However, no prior studies have examined how health literacy changes over time in SB. We sought to assess if health literacy changes over time and whether such changes were associated with transition readiness among young people with SB.
Methods: We performed a retrospective longitudinal study of prospectively collected patient-reported outcome (PRO) data from patients ≥12-years-old between May 2019 and March 2024 in a multi-disciplinary SB clinic. PROs were completed at each regular ambulatory visit in English or Spanish independently by the patient or with caregiver assistance. Our primary exposure was health literacy, measured with the 4-item BRIEF Health Literacy Screening Tool, with higher scores signifying better health literacy (score of 4-12=inadequate health literacy, 13-16=marginal health literacy, 17-20=adequate health literacy). Our primary outcome was transition readiness, measured with the 20-item Transition Readiness Assessment Questionnaire (TRAQ). Patients who had at least one repeat visit and were not missing data were included. Repeated measures linear mixed effects models with specified covariance structures were fit to assess whether health literacy changed over time and whether health literacy trends were associated with most recent TRAQ score, adjusted for demographic and clinical baseline characteristics. An interaction term between health literacy and time was included in the latter model to examine if increasing rates of health literacy over time are associated with increases in transition readiness.
Results: 292 patients completed repeat PRO measures of which 248 patients (85%) were included (baseline mean age 16.4 years, 52% female, 60% with myelomeningocele diagnosis). Median follow-up was 2.6 years (IQR 1.5-3.6). Overall, health literacy score improved significantly over time, with higher health literacy scores being associated with higher baseline age, adjusted for covariates. In examining the outcome of TRAQ score, older baseline age and better baseline health literacy were significantly associated with higher TRAQ score (Table). The interaction term between adequate health literacy and time was significant, suggesting that TRAQ scores increased at faster rates over time for those who achieve adequate health literacy, compared to inadequate health literacy.
Conclusions: Among young people with spina bifida, health literacy is a significant and potentially modifiable factor for increasing transition readiness. Health literacy increased with time and age. Patients with spina bifida who achieve higher health literacy can achieve faster increases in transition readiness. Further research is needed to develop and implement interventions targeting health literacy.
