Variability in Health Outcomes According to Pediatric to Adult Transfer-of-Care Status Among Young Adults With Sickle Cell Disease.

Purpose: Transitioning from pediatric to adult care is critical for young adults with sickle cell disease. While the transfer typically occurs at age 18, some pediatric providers continue care into adulthood. This study evaluates whether remaining in pediatric care versus transferring to adult care affects health outcomes. We hypothesized that those who remain in pediatric care after age 18 would experience fewer acute health-care events and better outcomes than those who transfer to adult care.

Methods: A retrospective cohort study was conducted at HEMORIO, a blood center in Rio de Janeiro, Brazil. Health-care utilization (outpatient visits, emergency department visits, hospitalizations), hydroxyurea use, care abandonment, and mortality were compared among young adults with sickle cell disease aged 18-23 under pediatric or adult care. Wilcoxon rank sum tests and Fisher's exact tests were used for statistical analysis.

Results: Among 472 eligible patients (50% female, 71% Hb SS or Hb Sβ0 thalassemia), 81 (17%) remained in pediatric care, while 391 (83%) transferred to adult care. After age 18, patients in pediatric care had fewer emergency visits and hospitalizations compared to those in adult care. Transferred patients showed increased emergency visits and hospitalizations relative to their adolescent period, whereas those remaining in pediatric care experienced reduced rates of these events.

Discussion: Transitioning to adult care is associated with increased adverse outcomes despite more frequent ambulatory visits. Enhancing transition programs to improve adult care integration and engagement is essential to address these disparities.