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.

Figure 1.

Proportion of deaths among individuals with SCD by age group. Adapted from Hassell (source: wonder.cdc.gov) with permission.

Figure 2.

Health deterioration multifactorial model during health care transition years for young adults with SCD.

Figure 3.

Map of the St. Jude Transition to Adult Care Program for SCD. Interventions within the program follow the Six Core Elements of Health Care Transition and occur according to age. Numbers next to the interventions correspond to one of the Six Core Elements of transition as follows: (1) transition policy, (2) tracking and monitoring progress, (3) assessing transition readiness, (4) planning for adult care, (5) adult care transfer, and (6) integration into adult care.

Figure 4.

Adult care engagement and care abandonment. Since program implementation in 2007, there has been a decrease in the number of patients who have abandoned pediatric care (β = −2.91; P = .002) (blue line), an increase in completion of transition (green line), and an increase in completion of the first visit with the adult provider after leaving pediatric care (β = 4.82; P ≤ .001). A gradual decline in care abandonment (red line) after transfer to adult care is shown from 2003 to 2017 (β = −1.91; P = .004).

Figure 5.

Transfer latency time from pediatric to adult care. With the implementation of the St. Jude Transition to Adult Care Program in 2007, mean latency time to the adult provider after the last visit at St. Jude has significantly decreased, from 64 months (range, 1-162 months) pretransition program to 1 month (range, 0-111 months) posttransition program (P < .001).