Lessons Learned from Building a Pediatric-to-Adult Sickle Cell Transition Program

South Med J. 2019 Mar;112(3):190-197. doi: 10.14423/SMJ.0000000000000950.

Abstract

Objective: More effective transitions and transfers of young people with sickle cell disease (SCD) into the adult healthcare setting is a focus of both primary care and specialty care medical organizations. Effective transition and transfer requires six core elements: establishing a policy, tracking progress, administering transition readiness assessments, planning for adult care, transferring to adult care, and integrating into an adult practice. We developed a program using these six core elements. The objective of our report was to assess the development and implementation of this program.

Methods: We used the six core elements to develop and implement a program at Virginia Commonwealth University for children and adolescents with SCD to transition to adult health care.

Results: We assessed individuals' differences by age and grade, their independent living skills, their feelings about moving to adult care; tallied and analyzed several assessment scales; and assessed transfer success and patient retention.

Conclusions: The principles and lessons we learned in developing and implementing this program over 5 years, accompanied by caring, flexible, and dedicated care team members, often can overcome even severe barriers to care transitions.

MeSH terms

  • Activities of Daily Living
  • Adolescent
  • Anemia, Sickle Cell / therapy*
  • Education
  • Employment
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Male
  • Organizational Policy
  • Patient Care Planning
  • Program Development
  • Program Evaluation
  • Retention in Care*
  • Self Efficacy
  • Social Support
  • Transition to Adult Care / organization & administration*
  • Young Adult