Improving SCD Care using Web-based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central North Carolina

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Abstract - The overall goal of the proposed project is to implement and evaluate a co-management model of care for persons with sickle cell disease in central North Carolina. Many patients with sickle cell disease (SCD) receive care primarily from specialty physicians and emergency departments (EDs), thus resulting in a lack of primary care, a high number of ED visits and hospitalizations, and ultimately poor health outcomes. Prior to model implementation, a comprehensive assessment of barriers to evidence based care will be conducted with all key stakeholders. We will enroll patients from Community Care North Carolina (CCNC, NC’s solution to managed care for Medicaid patients), and Duke University Sickle Cell program to: 1) increase co-management between sickle cell specialists and primary care providers (PCP’s); 2) increase the use of hydroxyurea (HU); 3) identify and link patients not receiving primary or SCD specialty care to care; and 4) shift healthcare use from EDs and hospitalizations to primary and specialty co-management. We will also partner with several EDs. All patients will be assigned a SCD nurse case manager (low level intervention). Patients, PCP’s and ED providers will be encouraged to contact and collaborate with the nurse case manager. Patients will be randomly assigned to receive monthly patient/peer coaching sessions for 12 months (high level intervention). Patients will consent to participate in the consortium registry and clinical trial. To facilitate HU therapy and best practice, as well as willingness to care for SCD patients, PCP’s and ED providers will receive education and decision aids (paper and web-based apps) adapted from the NHLBI recommendations. Project aims are to: 1. Identify patient, provider, healthcare organization, and community barriers to SCD co-management (primary and specialty care); HU prescription and adherence; accessing care; and reduction in ED use and hospital admissions. We will use these findings to modify the trial (Aim 2b). 2. Enroll 300 patients, including patients not connected to a SCD center, into the consortium SCD registry and pragmatic clinical trial. a. Collect clinical data (HU prescriptions and adherence), health services utilization (number of ED visits, hospital admissions, and re-hospitalizations) for the length of the project. Collect patient reported outcomes for 12 months (pain interference, physical function (adult)/mobility (adolescents), fatigue and sleep (adults only). All data will be entered in the registry. b. Compare the effect of low and high level patient focused interventions on pain interference (primary study outcome). Secondary outcomes include clinical (HU prescription and adherence), health services utilization (number of ED visits hospital admissions, and re-hospitalizations), and patient reported measures for physical function (adult)/mobility (adolescents), fatigue and sleep (adults only) over 12 months.