Developing a Transition Care Coordination Program for Youth With Spina Bifida

This quality improvement pilot study focused on developing and facilitating readiness for transition in youth with spina bifida. The results contribute to a broader institution-wide initiative at a subspecialty pediatric organization.

The clinical roles of six nurse care coordinators were restructured to add responsibility for transition care coordination. Together, parents, youth, and nurse transition care coordinators created and implemented individualized family-centered care plans focused on improving self-management and readiness for transition to adulthood. The Transition Readiness Assessment Questionnaire was administered before and after intervention initiation.

Fourteen youth-parent pairs participated in this study. Postintervention Transition Readiness Assessment Questionnaire results indicated that both parents and youth perceived improvement in transition readiness. Youth perceived more improvement than did parents.

This pilot study showed that budget-neutral processes can be systematically implemented to facilitate transition preparation from pediatric to adult health care services for youth with spina bifida and their families.