Introduction: Patients with spina bifida (SB) often have cognitive impairments making the difficult transition process to adult care even more challenging. Objective: The objective of this study was to identify what patient factors impact transition readiness in this population. It is hypothesized that young adults with SB with more healthcare exposure were more likely to report readiness to transition. Methods: Consecutive patients ≥18 years old in the adult SB clinic were evaluated using the validated Transition Readiness Assessment Questionnaire (TRAQ, 8/17-5/18). Five TRAQ domains assess 20 skills necessary to transition. Responses are 1 No, I do not know how"; 2 No, but I want to learn"; 3 No, but I am learning how to do this"; 4 Yes, I have started doing this"; 5 Yes, I always do this when I need to" (considered “fully transitioned”). Demographics, ambulatory status, shunt status, shunt revisions, number of medications, and prior bladder augmentation were assessed. Domain and total TRAQ scores were analyzed using non-parametric statistics and linear regression. Results: Ninety-six patients (60.4% females, 70.8% shunted) participated at median age 25.5 years. Overall median TRAQ score was 4.0/5.0, indicating that patients were starting to transition. On univariate analysis, age >25 years was associated with higher TRAQ scores across every domain and overall (P ≤ 0.01). Female gender was also associated with higher TRAQ scores for “Appointment Keeping,” "Tracking Health Issues" and overall (P ≤ 0.03). Race, ambulatory status, shunt status, number of shunt revisions, number of medications, and prior bladder augmentation were not associated with TRAQ scores (P ≥ 0.12). After adjusting for gender on bivariate analysis, age >25 years was associated with higher TRAQ scores for “Appointment Keeping,” "Tracking Health Issues," “Talking with Providers,” and “Managing Daily Activities” domains and overall (P ≤ 0.03), but not the “Managing Medications” domain (P = 0.07). Female gender was not independently associated with higher domain or overall TRAQ scores (P≥0.10). Discussion: The transition readiness of young adults with SB compared based on demographic factors and factors increasing healthcare exposure is described. Limitations include the small sample size, potentially limiting generalizability, as well as cross-sectional nature. Conclusion: Transitioning adults with SB had TRAQ scores indicating that they were not yet fully transitioned in terms of their healthcare-related behavior. Older age was the only factor associated with transition readiness, which was not impacted by other demographics. Increased attention to transition readiness and consideration of a longer transition process in this population is necessary.
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health