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

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.

Implementing a Transition Program from Paediatric to Adult Services in Phenylketonuria: Results after Two Years of Follow-Up with an Adult Team

“…In one paper, all patients with type 1 diabetes remained in follow-up three years after transfer [ 34 ]. Other programs documented dropout rates of 9% (rheumatology [ 35 ]) and 22% (sickle cell disease [ 36 ]). We understand that, in some centres patients may continue to be under the care of paediatric teams, but adult service establishment will be in a better position to manage and monitor adult medical issues [ 7 , 9 ].…”

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

“…46,47 Furthermore, adult care providers were less willing to accept adults with SCD because of the complexity of their management, for which the providers did not have the necessary expertise. 3,[48][49][50] In addition, both adolescents and adults with SCD and primary care providers highlighted the inadequacies of the current system in addressing the chronic pain needs of this population. Linking back to the Solberg conceptual framework, our needs assessment results confirm the important role of establishing SCD care as a priority within a health care system-this requires leadership and vision.…”

A scoping review of transition interventions for young adults with sickle cell disease

“…32 Six studies assessed the impact of transition programs on psychosocial outcomes (self-efficacy, disease knowledge, transition readiness), [33][34][35][36][37][38] and one study looked at rate of transfer as a primary outcome. 39 Among the studies designed to test feasibility, four assessed the feasibility of electronic or mobile health-based programs, while the other two programs were conducted in person. Both electronic and in-person interventions demonstrated high acceptability among participants.…”