Sickle Cell Disease Implementation Consortium

Advances in care delivery and treatment have more than doubled the life expectancy of individuals with sickle cell disease (SCD) since 1972. Beginning in the 1970s, measures such as newborn screening and prophylactic administration of penicillin decreased complications and morbidity, increasing the length and quality of life of children with SCD. More recently, the use of hydroxyurea as a therapeutic agent to increase fetal hemoglobin has been shown to further reduce the debilitating symptoms of and improve survival in SCD. However, many of these advances have not translated into an increase in longevity or quality of life for adolescents and adults because of disparities in access to routine primary health care.

The Sickle Cell Disease Implementation Consortium (SCDIC) is the first research program to use Implementation Science to identify and address barriers to quality care in Sickle Cell Disease (SCD).  Implementation science promotes the adoption of research findings into healthcare.  Therefore, Implementation science methods are particularly suited to address the gap in the use of evidence-based practices in care for patients with SCD.

SCDIC is a cooperative research program that includes:

1. Conducting a needs-based community assessment of the barriers to care for patients with SCD
2. Designing 3 implementation research studies that address identified barriers to care for patients with SCD
3. Helping to design and develop a SCD patient registry, in collaboration with clinical centers and The National Heart, Lung, and Blood Institute (NHLBI)

The 8 clinical centers participating in the SCDIC represent academic and medical institutions and research teams that are multi-disciplinary in sickle cell disease, pediatrics and adult care, hematology, community-based research, and implementation science. Each clinical center enrolled and is following over time at least 300 adolescents and adults with SCD.

The end products of this research will identify barriers to care and evidence-based practices that will improve patient access to care, sustainability of care, and quality of life for those with SCD.

SCDIC conducts implementation-science based research studies to understand different aspects of how people are affected by a SCD.

We conducted a needs assessment, which used interviews, focus groups, and surveys to determine and address the needs of people with SCD. We discovered that pain was the most common problem for patients and that patients had trouble controlling their pain because of the current opioid crisis. In addition, patients were frustrated with care they got in the emergency department, and patients avoided the emergency department because they felt disrespected. We also asked primary care providers to tell us about their experiences caring for patients with sickle cell disease. Providers expressed concerns about side effects and that they were uncomfortable prescribing opioids.

Other studies conducted include:

• a patient registry of over 2,400 participants that obtains medical information and patient reported outcomes at several points in time
• A study examining the implementation and effectiveness of mobile health apps for improving hydroxyurea adherence for patients with SCD
• a study to identify reasons individuals with SCD might not be affiliated with health care
• a study aimed at implementing individualized pain plans with patient and provider electronic health record access for SCD patients in the emergency department.

SCDIC continues to publish papers based on our findings. Recent examples include a needs assessment of barriers to SCD care in the emergency department and effective recruitment strategies for a SCD registry.