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

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 challeng...

Full description

Bibliographic Details
Main Authors: Sydney Sheppard, Julie Kanter
Format: Article
Language:English
Published: Cambridge University Press 2021-03-01
Series:Journal of Clinical and Translational Science
Online Access:https://www.cambridge.org/core/product/identifier/S2059866121007263/type/journal_article
_version_ 1811155299113893888
author Sydney Sheppard
Julie Kanter
author_facet Sydney Sheppard
Julie Kanter
author_sort Sydney Sheppard
collection DOAJ
description 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 HbSß0) (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.
first_indexed 2024-04-10T04:31:59Z
format Article
id doaj.art-9ee61242954142bcb2a4f8360d018e1f
institution Directory Open Access Journal
issn 2059-8661
language English
last_indexed 2024-04-10T04:31:59Z
publishDate 2021-03-01
publisher Cambridge University Press
record_format Article
series Journal of Clinical and Translational Science
spelling doaj.art-9ee61242954142bcb2a4f8360d018e1f2023-03-10T07:52:03ZengCambridge University PressJournal of Clinical and Translational Science2059-86612021-03-01512712810.1017/cts.2021.72648847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition ProgramSydney Sheppard0Julie Kanter1University of Alabama at Birmingham School of MedicineHematology/Oncology, University of Alabama at BirminghamABSTRACT 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 HbSß0) (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.https://www.cambridge.org/core/product/identifier/S2059866121007263/type/journal_article
spellingShingle Sydney Sheppard
Julie Kanter
48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program
Journal of Clinical and Translational Science
title 48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program
title_full 48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program
title_fullStr 48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program
title_full_unstemmed 48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program
title_short 48847 Assessing Transition Outcomes in Sickle Cell Disease (SCD) Prior To Implementation of A Formal Transition Program
title_sort 48847 assessing transition outcomes in sickle cell disease scd prior to implementation of a formal transition program
url https://www.cambridge.org/core/product/identifier/S2059866121007263/type/journal_article
work_keys_str_mv AT sydneysheppard 48847assessingtransitionoutcomesinsicklecelldiseasescdpriortoimplementationofaformaltransitionprogram
AT juliekanter 48847assessingtransitionoutcomesinsicklecelldiseasescdpriortoimplementationofaformaltransitionprogram