Improving Sickle Cell Disease (SCD) Care Using Web-based Guidelines
Improving Sickle Cell Disease (SCD) Care Using Web-based Guidelines
The overall goal of this proposed project is to 1) increase co-management between sickle cell
 specialists and primary care providers (PCP's); 2) increase the use of hydroxyurea (HU) which
 prevents Vaso-Occlusive Episode (VOE), EDs and subsequent hospitalizations, and death; 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. Many
 persons with SCD experience a poor quality of life, serious medical complications and
 frequent painful events that require treatment from SCD specialty care, primary care and
 emergency department (ED) providers. There are two dominating models of care in the United
 States; neither are ideal. Many people with SCD have all of their healthcare needs addressed
 by sickle cell specialists who do not typically provide primary care and are often
 geographically distant from the patients' home. Other sickle cell patients receive all of
 their care in EDs. Both models are inadequate and result in an alarmingly high number of ED
 visits for many patients. Current care models are neither cost efficient nor promoting
 optimal patient outcomes. To improve outcomes, the investigators will implement a new model
 of care for SCD using nurse care managers, web based-interactive algorithms, and test if
 additional patient provided coaching can improve outcomes.
To inform the model, the investigators will conduct an initial in-depth multi-level
 assessment of the barriers to care and implementation of the NHLBI "Evidence-Based Management
 of Sickle Cell Disease". With barriers and facilitators identified at the patient, provider,
 healthcare organization and community levels, the investigators will develop another study
 evaluation interventions that may improve the barriers.
Inclusion Criteria:

 - SCD patients in the 31 geographic counties surrounding Duke with genotypes Hemoglobin SS,
 SC, Sβ° or, Sβ+.

 and -Parents of 15-20 year old SCD patients in the 31 geographic counties surrounding Duke
 with genotypes Hemoglobin SS, SC, Sβ° or Sβ+.

 and

 -Healthcare providers of sickle cell patients in the 31 geographic counties surrounding
 Duke

 Exclusion Criteria:

 -  Non-English speaking