Improving Sickle Cell Disease (SCD) Care Using Web-based Guidelines

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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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

Conditions
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Sickle Cell Disease

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 15 Years
Maximum Age: 45 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| SCD Adult Patients<br>Focus group or individual interview and survey | |
| SCD Adolescent Patients<br>Focus group or individual interview and survey | |
| SCD Healthcare Providers<br>Focus group or individual interview and survey | |
| Parents of SCD Adolescents<br>Focus group or individual interview and survey | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Barriers to primary care as measured by Focus Groups./interviews | Qualitative analysis will be used to analyze interviews and focus groups. | 60 Minutes after focus group or interview | 
| Barriers to specialty care as measured by Focus Groups./interviews | Qualitative analysis will be used to analyze interviews and focus groups. | 60 Minutes after focus group or interview | 
| Barriers to ED care as measured by Focus Groups./interviews | Qualitative analysis will be used to analyze interviews and focus groups. | 60 Minutes after focus group or interview | 
| Barriers to primary care as measured by Survey | Descriptive statistics will be used to summarize the survey data. | Approximately 30-45 minutes | 
| Barriers to specialty care as measured by Survey | Descriptive statistics will be used to summarize the survey data. | Approximately 30-45 minutes | 
| Barriers to ED care as measured by Survey | Descriptive statistics will be used to summarize the survey data. | Approximately 30-45 minutes | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Sickle Cell Disease, Needs Assessment, Barriers to care, Access to care, Primary care