AIM

Transition from pediatric to adult healthcare is a critical period. Recommendations have pointed to greater preparation of youths and families and better coordination. Considerations such as patient values and preferences may - if not taken into consideration - impede uptake of clinical recommendations. This survey-based study aimed to better understand challenges, needs, and intervention preferences of youths and parents during transition.

METHODS

Two online surveys were designed to investigate challenges, needs, and intervention preferences of youths with a chronic or rare condition and parents during transition. The youth survey included the French translation of the Transition Readiness Assessment Questionnaire (TRAQ). Additional questions were derived from an interview-based study and aimed to grasp issues related to human flourishing in addition to more conventional clinical issues related to the transition process. Descriptive statistics were used and ANOVAs to detect differences between the groups when applicable.

RESULTS

86 youths and 94 parents completed the survey. Average scores for TRAQ subscales were high except for "Tracking health issues" and "Appointment keeping". Youths and parents reported being able to give their opinion. Parents were judged to be slightly over-involved. Ongoing involvement of parents in health management was desired. Awareness of differences between pediatric and adult healthcare was high, but a source of notable concern (e.g., accessibility of different medical and professional services). Information on transition was lacking. Installing a pivot-person, visits to the adult hospital, meeting other youths, and accessing transition videos were supported interventions.

CONCLUSION

Transition readiness can be high, but significant challenges can still be present and salient. Youths and adults want to be involved and informed to prepare actively for transition through meetings or adapted materials.