Multistate Analysis of Transfer to Adult Care in Sickle Cell Disease

Advancements in sickle cell disease (SCD) care have improved survival to adulthood in high-resource countries; however, a 20-year life expectancy gap persists compared with the general population. Transfer from pediatric to adult SCD care represents a vulnerable period, yet population-level data on transfer outcomes are limited. We evaluated rates and factors associated with successful transfer to adult care among youth with SCD across three US states and assessed associated health care utilization.

We used data from the Centers for Disease Control and Prevention's (CDC's) Sickle Cell Data Collection program from Alabama, Colorado, and Indiana and included individuals aged 15-20 years with confirmed or probable SCD and continuous insurance coverage for 12 months following their last pediatric encounter. Successful transfer was defined as ≥2 outpatient encounters with an adult provider within 12 months. Health care utilization, chronic transfusion therapy, and social vulnerability index (SVI) were analyzed by transfer status.

Among 205 individuals, 42.4% achieved successful transfer to adult care. Of these, 18.6% established care with an adult hematologist/oncologist, and 5.8% with an adult SCD specialist. Successfully transferred youth demonstrated higher acute care utilization with median emergency department visits increasing from 3.02 to 3.97 per person-year post transfer, compared with 1.25 to 1.12 among the unsuccessful group. Chronic transfusion therapy was more common among the successfully transferred (16.1% vs. 13.6%), whereas SVI was similar between groups.

Fewer than one-fifth of individuals with SCD successfully transferred to an adult hematologist/oncologist. Successful transfer was associated with higher acute and outpatient health care utilization, highlighting persistent gaps in continuity of care.