Developing a Transition Care Coordination Program for Youth With Spina Bifida.

Area of Science:

• Pediatric Healthcare Quality Improvement
• Transition of Care Research
• Adolescent Health Management

Background:

• Youth with spina bifida require specialized care coordination during their transition from pediatric to adult healthcare.
• Existing healthcare systems often lack structured support for this critical transition period.
• A proactive approach is needed to ensure continuity of care and promote self-management skills.

Purpose of the Study:

• To develop and pilot a quality improvement initiative to enhance transition readiness in youth with spina bifida.
• To evaluate the impact of restructured nurse care coordinator roles on transition preparation.
• To assess perceived improvements in self-management and readiness for adult healthcare.

Main Methods:

• Restructured clinical roles of six nurse care coordinators to include transition care coordination.
• Developed and implemented individualized, family-centered care plans with youth and parents.
• Utilized the Transition Readiness Assessment Questionnaire (TRAQ) pre- and post-intervention.

Main Results:

• Fourteen youth-parent pairs completed the study.
• Post-intervention TRAQ scores indicated improved transition readiness for both youth and parents.
• Youth reported a greater perceived improvement in transition readiness compared to parents.

Conclusions:

• Budget-neutral processes can be systematically implemented to facilitate transition preparation.
• This model effectively supports youth with spina bifida and their families in transitioning to adult healthcare.
• Quality improvement initiatives involving nurse care coordinators can enhance patient outcomes during care transitions.