A program of transition to adult care for sickle cell disease

Abstract

Most children with sickle cell disease (SCD) today survive into adulthood. Among emerging adults, there is a marked increase in acute care utilization and a rise in mortality, which can be exacerbated by not establishing or remaining in adult care. Health care transition programs are therefore essential to prepare, transfer, and integrate emerging adults in the adult care setting. The Six Core Elements of Health Care Transition, created by the Center for Health Care Transition Improvement, define the basic components of health care transition support as follows: (1) transition policy, (2) tracking and monitoring progress, (3) assessing transition readiness, (4) planning for adult care, (5) transferring to adult care, and (6) integrating into adult care. Programs that implement the Six Core Elements have experienced significant declines in care abandonment during adolescence and young adulthood and higher early adult care engagement. Most of the core transition activities are not currently reimbursable, however, posing a challenge to sustain transition programs. Ongoing studies are investigating interventions in comparative effectiveness trials to improve health-related quality of life and reduce acute care utilization among emerging adults with SCD. Although these studies will identify best practices for health care transition, it is also important to define how the transition outcomes will be measured, as no consensus definition exists for successful health care transition in SCD. Future research is needed to define best practices for health care transition, systematically assess transition outcomes, and revise payment models to promote sustainability of health care transition programs.

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

“…Beyond the areas mentioned above, our review highlighted the limited use of international 11 and national transition program frameworks 10 to guide the development of transition programs for individuals with SCD. Only three of the identified programs used the Got Transition framework to design their programs 4,22,39 . Additionally, our review highlighted the need for better collaboration across sites to facilitate multisite studies.…”

Progression of central nervous system disease from pediatric to young adulthood in sickle cell anemia

“…Interruptions of care are relatively common in the transition from pediatric to adult care. 26,27 Possibly, challenges related to adolescence and continuity of care may also have contributed to this increased risk of progressive CNS disease.…”

Cognitive performance as a predictor of healthcare transition in sickle cell disease

“…All participants, or their legal guardians, provided informed consent. SCCRIP participants receive the same transition preparation services regardless of neurocognitive ability through the St. Jude Transition to Adult Care Program 21 . Our transition programme has been described in detail previously 21 .…”

“…SCCRIP participants receive the same transition preparation services regardless of neurocognitive ability through the St. Jude Transition to Adult Care Program 21 . Our transition programme has been described in detail previously 21 . In brief, our programme spans the ages of 12–25 years, prepares, tracks transition readiness and completes transfer to adult care at age 18 years in >90% of participants within six months 21 .…”

“…Our transition programme has been described in detail previously 21 . In brief, our programme spans the ages of 12–25 years, prepares, tracks transition readiness and completes transfer to adult care at age 18 years in >90% of participants within six months 21 . The transition policy is presented to the patient at age 12.…”