Implementation of Medical Homes for Evidence Based Care of Adolescents and Adults with Sickle Cell Disease

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Problem. Suboptimal adherence to medications and treatment is associated with increased morbidity and mortality, with associated health care costs estimated between 100 - 300 billion dollars, nationally. Adherence to hydroxyurea (HU) is a problem for persons with sickle cell disease (SCD). A landmark double-blind randomized, controlled trial demonstrated the benefits of HU use by adult patients with SCD. Participants taking HU experienced a reduction in the frequency of vaso-occlusive crises, hospitalizations, and the need for blood transfusions. HU is a fetal hemoglobin (HbF) inducer that mitigates many of the chronic complications in persons with SCD and is the principle U.S. FDA approved medication for adults (1998) and children (2017) with SCD. HU also reduces the episodes of acute chest syndrome, number of hospitalizations, and mortality. Known. Poor adherence to HU is associated with lower fetal hemoglobin and the protective factors associated with the treatment. Adherence strategies include treatment simplification and decreased dosing (1 or 2 times per day), behavioral interventions given 1 to 1, and linking adherence to routine habits. Proposed Solution. The Hydroxyurea Adherence Project (HAP) is a behavioral pilot intervention study. It can be summarized as a project using a set of behavioral intervention strategies to improve adherence to hydroxyurea (HU) and health outcomes in persons with sickle cell disease. This project is based on the findings from HU adherence literature to determine strategies that may promote HU adherence. The Parent Grant title: Implementation of medical homes for evidence-based care of adolescents and adults with sickle cell disease. The parent grant authors identified substantial study evidence that supports the benefit of HU. Currently, acceptance of HU is inadequate, given the considerable disease burden and early mortality associated nonadherence. Strategies to increase adoption of the SCD clinical practice guidelines13 including HU use within a Patient-Centered Medical Neighborhood model is an important goal. HU adherence can change the course of disease progression in persons with sickle cell disease and thus result in a healthier life. The goal of this project is to improve adherence to HU therapy by empowering the person with SCD in behavior change that supports adherence to hydroxyurea for the person’s health benefit.