Improving Sickle Cell Disease (SCD) Care Using Web-based Guidelines
| Status: | Completed |
|---|---|
| Conditions: | Anemia |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 15 - 45 |
| Updated: | 8/10/2018 |
| Start Date: | May 31, 2017 |
| End Date: | December 7, 2017 |
Improving Sickle Cell Disease (SCD) Care Using Web-based Guidelines, Nurse Care Managers and Peer Mentors in Primary Care and Emergency Departments in Central North Carolina
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.
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.
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
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