Peer-reviewed article

48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program

Sheppard S, Kanter J · 30 Mar 2021

Summary

Written by AI, not yet AICS's view · claude-haiku-4-5-20251001

This study examined how well young adults with sickle cell disease transition from pediatric to adult healthcare at a large US medical center. Researchers reviewed records of 544 patients aged 18-24 to understand which factors help or prevent successful transition to adult care. They found that geography, disease severity, and specific treatments influenced whether young people successfully moved to adult care or were lost to follow-up.

Key points

Of 544 patients meeting inclusion criteria, 189 successfully transitioned to adult care, 234 were lost to follow-up, 36 moved, and 15 died
68% of patients who successfully transitioned had their last pediatric visit in Birmingham, compared to 32% from outreach sites
Patients with more severe sickle cell disease (HbSS or HbSβ0 genotype) were more likely to successfully transition
Patients receiving hydroxyurea or chronic transfusion therapy were more likely to successfully transition
Geography, genotype, and disease therapy are potential drivers of successful transition outcomes

Limitations

This is a retrospective chart review from a single healthcare system in Alabama, so findings may not generalize to other regions or healthcare settings. The study identifies associations but cannot establish causation, and does not explain the mechanisms behind why these factors influence transition.

Abstract

ABSTRACT IMPACT: To identify potential facilitators and barriers to a successful transition in care. OBJECTIVES/GOALS: Improvements in care for children with sickle cell disease (SCD) have increased survival into adulthood. However, mortality rates are increasing in young adults. One of the challenges is providing appropriate care during transition from pediatric to adult care. The goal is to identify facilitators and barriers to a successful transition in care. METHODS/STUDY POPULATION: The UAB SCD Center serves a large area of Alabama. The pediatric program is in Birmingham and has outreach clinics in three other cities. The adult program only has one clinic located in Birmingham. With IRB approval, we performed a retrospective chart review of individuals with SCD (all genotypes) aged 18-24 (as of 1/31/2019) who were seen at least twice prior to age 18 (in pediatrics) and have confirmed SCD. Charts were reviewed for demographics, genotype, last known insurance, SCD therapy, clinic location, and transition status. Analyses were undertaken to determine predictors of successful transition (defined as coming to an appointment with an adult hematologist) and unsuccessful transition (defined as lost to follow-up (LTFU) without transfer of care). RESULTS/ANTICIPATED RESULTS: There were 544 individuals meeting inclusion criteria. Of this group, 234 were LTFU, 189 transitioned, 36 moved, and 15 died. Seventy patients are still under pediatric care and were excluded. Sixty-eight percent of patients that transitioned had their last pediatric visit in Birmingham, compared to only 32% of those that transitioned from outreach sites (p<.01). Patients were more likely to successfully transition if they had sickle cell anemia (HbSS or HbSÃŸ0) (p<.01) and if they were receiving hydroxyurea or chronic transfusion therapy (p<.01). DISCUSSION/SIGNIFICANCE OF FINDINGS: Geography, genotype, and SCD therapy are potential drivers for transition. Genotype in pediatrics likely confers disease severity, suggesting patients with worse SCD may be more likely to successfully transition. Novel strategies are needed to improve transition of care for patients outside of Birmingham and those with less severe disease.

Findings the Hub has extracted

Each claim below is labelled by its type of design and links back to this report.

SurvivalDevelopment

Problem

Young adults with sickle cell disease experience increasing mortality during transition from pediatric to adult healthcare, with many lost to follow-up

Intervention: Assessment of factors associated with successful transition prior to implementing a formal transition program
Population: Individuals with sickle cell disease aged 18-24 seen at least twice in pediatric care prior to age 18 at UAB SCD Center in Alabama

Key finding

234 of 544 patients (43%) were lost to follow-up without transfer of care

Practitioner