Background: Healthcare transition (HCT) is the establishment of adolescents and young adutlts (AYA) as independent stakeholders in their own healthcare. Consensus statements and limited data indicate that transition can be a challenging process for adolescents with chronic illnesses or disabilities. The aims of this study were to identify any risk factors for challenges with HCT and to assess whether there is a correlation between transition readiness and psychosocial concerns, namely anxiety and worry, surrounding HCT.
Methods: A query in EPIC was run for adolescent patients seen at a single institution over a five-year span (2017-2022) with complex congenital urologic diagnoses. These patients were electronically administered demographic questions, the validated Transition Readiness Assessment Questionnaire (TRAQ) and a created ADHERENT survey, which assesses anxiety and worry surrounding HCT.
Associations between categorical variables and TRAQ and ADHERENT scores were assessed using the Wilcoxon rank sum test and Spearman correlations for continuous variables. A linear regression, with robust standard errors, was utilized to gauge multivariable associations between covariates of clinical interest and TRAQ and ADHERENT outcomes. All analyses were conducted using SAS v 9.4 (Cary, NC).
Results: A total of 69 patients completed all portions of our surveys. Participants who were older, had higher educational degrees, and were in stable relationships had significantly higher TRAQ scores. On multivariate analysis, the youngest subgroup (14-17 years of age) compared to the oldest subgroup (21-25 years of age) demonstrated strong evidence towards lower TRAQ scores (mean difference = -14.4; 95% CI: -24.7, -4.1; p=0.006). A Spearman correlation plot demonstrated a relationship between higher TRAQ scores and lower ADHERENT scores (Figure 1).
Conclusions: Age-appropriate developmental readiness for transition seems to be the most important predictor for higher TRAQ scores, representing increased readiness. Transition programs that prepare patients at younger, albeit developmentally appropriate, ages might help mitigate some of these differences. Given the relationship between more transition readiness and increased anxiety or worry about transition, creation of formalized programs that address both logistical and psychosocial aspects of transition are critical to patient safety and well-being. Focus groups have been completed and will be analyzed qualitatively to further understand the experience of AYA and to utilize their recommendations in future programming.
