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Enhancing Use of Hydroxyurea in Sickle Cell Disease Using Patient Navigators

Enhancing Use of Hydroxyurea in Sickle Cell Disease Using Patient Navigators

For patients with Sickle Cell Disease (SCD), a large percentage may not be in specialty care and, furthermore, may face barriers to care. For adults, a lack of access to specialty care may be fatal as specialists can prescribe Hydroxyurea (HU), the first and only FDA-approved remittive drug for SCD. Additional barriers to HU include physician fears or misconceptions about its use, inconsistent determination of HU eligibility, inconsistent dose escalation and patient failure to take HU - due to ignorance or mistrust of relative benefits and harms, inconvenience associated with therapy, or poor medication access. To overcome these barriers, the state of Virginia, including the Virginia Department of Health, CHKD and VCU, has planned a two-phase demonstration. The first phase concerns improvement in the percentage of adults with SCD who are in SCD specialty care. Next, the second phase aims to improve adherence to HU of eligible SCD adults. Both phases will use existing academic SCD providers, and an innovative, multimodal strategy, featuring specially trained SCD Patient Navigators that addresses barriers to care and to HU use. In Phase I the program will demonstrate the feasibility of utilizing PNs to overcome patient access barriers to SCD care. In Phase II it will test the efficacy of PNs for overcoming barriers to acceptance of and adherence with HU therapy. Patients will be randomized to a PN or usual care arm. Providers will implement NIH guidelines for HU eligibility and prescribing in both arms. The specific aims of the study are to demonstrate the feasibility of a Patient Navigator-based program to improve the percentage of adult patients with sickle cell disease in the Richmond and Tidewater regions of Virginia who are in specialty care and to demonstrate the effectiveness of the program to improve hydroxyurea initiation and adherence among adult patients.


    • Administrative Location

    • EVMS Internal Medicine - Hofheimer Hall
      825 Fairfax Avenue, Suite 201
      Norfolk, VA 23507
    • Project Location

    • Southeastern Virginia
    • Project Partner(s)

    • CHKD, VCU
    • Grant(s)

    • Virginia Commonwealth University
    • Participant Eligibility

    • Faculty, Physicians
    • Project Categories

    • Community Service, Research Scholarship
    • Project Scope

    • Local
    • EVMS Department(s)

    • Internal Medicine
    • Points of Contact