How Do Youth with Cystic Fibrosis Perceive Their Readiness to Transition to Adult Healthcare Compared to Their Caregivers' Views?

Purpose: To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider.

Design And Methods: The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed.

Results: Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p < .001). Sixteen was the average age of transition discussion for both youth and caregiver. Reported frequency of discussion varied considerably.

Conclusions: Although increasing age predicts perception of self-care management, many youth age 18-22 were still only contemplating or starting to learn skills. Skill level perceptions between youth and caregiver differed, but scores from all self-care management domains followed a similar trend. Discussions with providers began later than guidelines recommend and were often not recognized as such by youth.

Practice Implications: Results underscore the importance of beginning transition discussion and skill evaluation in youth with cystic fibrosis at an early age, incorporating caregivers' perception in the process.