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.