Life expectancy for patients with sickle cell disease (SCD) has increased from teens to late forties over the last 30 years. The increase in the number of adults with the disease has created new unmet needs, due to the heavy disease burden and organ damage which increase with age. This is confounded by the inability of the health care system to adequately meet the needs of this population, and thus has resulted in disparities and increase in health care costs. This project attempts to address these problems by creating medical homes and medical neighborhoods in four different settings throughout rural Georgia, which has the fourth largest population of patients with SCD in the country. This will be achieved by building on the GRU Sickle Cell Center's experience in taking care of SCD patients through its outreach clinics, and more recently through its partnership with primary care practices and Hematology/Oncology practices at different locations in the state. In the first two years of the project (Phase I) a needs assessment of patients, communities, and providers will be carried out and a Community Advisory Council will be established. The results of this needs assessment will be used to develop and implement interventions to establish medical homes and neighborhoods to improve evidence-based care for SCD patients in Phase II.
Advances in the diagnosis and care of infants and children with sickle cell disease (SCD) has led to an increase in life expectancy of this population and an increase in the number of adults with the disease. Chronic organ damage associated with the natural history of the disease on one hand, and challenges imposed by the health care system (large number of uninsured/underinsured patients, stigmatization, paucity of adult providers with expertise in the care of SCD) on the other, have created unmet needs. This project, in response to RFA HL- 16010, builds on the 30-year experience of the GRU Sickle Cell Center in providing care to patients with SCD in rural Georgia through its extensive outreach clinics and proposes to address these unmet needs by the creation of patient-centered medical homes and neighborhoods in four diverse health care settings.
|Baumann, Ana A; Belle, Steven H; James, Aimee et al. (2018) Specifying sickle cell disease interventions: a study protocol of the Sickle Cell Disease Implementation Consortium (SCDIC). BMC Health Serv Res 18:500|