Transition from pediatric to adult care in sickle cell disease: establishing evidence-based practice and directions for research

Abstract

Transition of young adults with sickle cell disease (SCD) from pediatric to adult medical care is an important priority, given medical advances that have transformed SCD into a lifelong chronic condition, rather than a disease of childhood. Successful transfer from pediatric to adult care has its foundation in collaboration among the young adult, the family, and the health care system to support building skills in positive disease management and independent living. Systemic issues in transition from pediatric to adult care for individuals with SCD include limited access to adult providers with the skills and/or interest in caring for people with SCD; poor communication and follow-up between pediatric and adult providers; and insurance coverage and reimbursement for care coordination. Family and patient issues in transition include lack of skill development for successful transition into adulthood; absence of financial independence; fear of the unknown; and increasing morbidity with age. The design and evaluation of successful transition programming in SCD requires clarity in conceptual frameworks and consistent measurement, both before and after transfer to adult care. Strategies used by three SCD transition programs and future directions for research and program development are presented.

Figure 1

Biosocial ecological model of health.

Figure 2

Stages of change adapted from Prochaska and DiClemente. [Color figure can be viewed in the online issue, which is available at wileyonlinelibrary.com.]

Figure 3

Conceptual model of the tasks of transition. There are many overlapping tasks as youth assume the adult medical model and transition to independence in other areas.