Identification of risk factors for an unsuccessful transition from pediatric to adult sickle cell disease care

Authors

  • Biree Andemariam MD,

    Corresponding author
    1. Adult Sickle Cell Center, Division of Hematology-Oncology, University of Connecticut Health Center, Farmington, Connecticut
    • Correspondence to: Biree Andemariam, Assistant Professor of Medicine, Director, Adult Sickle Cell Center, Division of Hematology-Oncology, University of Connecticut Health Center, 263 Farmington Avenue, MC 1628, Farmington, CT 06030.

      E-mail: andemariam@uchc.edu

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  • Jasmine Owarish-Gross BA,

    1. Adult Sickle Cell Center, Division of Hematology-Oncology, University of Connecticut Health Center, Farmington, Connecticut
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  • James Grady DrPH,

    1. Department of Community Health and Health Care, University of Connecticut Health Center, Farmington, Connecticut
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  • Donna Boruchov MD,

    1. Department of Pediatrics, Connecticut Children's Medical Center, Hartford, Connecticut
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  • Roger S. Thrall PhD,

    1. Department of Research, Hospital for Special Care, New Britain, Connecticut
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  • J. Nathan Hagstrom MD

    1. Department of Pediatrics, Connecticut Children's Medical Center, Hartford, Connecticut
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  • Conflict of interest: Nothing to report.

Abstract

Background

A successful transition from pediatric to adult sickle cell disease (SCD) care is paramount to continued improvements in survival. In order to enhance transition success, our pediatric SCD transition process was modified to include combined adult and pediatric provider clinics that incorporated participation by our local SCD community-based organization. All children ages 16 and over participated in this newly-formed transition program.

Procedure

After 5 years of implementation of the modified SCD transition program, we retrospectively studied clinical and non-clinical risk factors for an unsuccessful transition. Risk factor categories studied included patient demographics, transition clinic attendance, and disease severity.

Results

Thirty-two percent of patients did not transition successfully. Demographic factors such as gender, race, and type of insurance did not influence transition outcome, although travel distance to the adult SCD center was an identifiable risk factor for an unsuccessful transition. While transition clinic attendance rate did not affect transition outcomes, older age at first modified combined transition clinic visit was a significant risk factor for lack of transition. Patients with clinical markers of milder disease severity (SC and Sβ+ genotypes and no chronic transfusion therapy) were at higher risk for an unsuccessful transition than patients with severe disease.

Conclusions

We have identified several risk factors for lack of transition success which will allow us to modify our transition efforts going forward to capture this highest risk subset. Pediatr Blood Cancer 2014;61:697–701. © 2013 Wiley Periodicals, Inc.

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