News

New Initiative Spreads a Potential Innovation for Improving Sickle Cell Disease Outcomes

August 28th, 2019

BOSTON- Sickle cell disease (SCD), an inherited blood disorder that affects approximately 100,000 Americans and disproportionately impacts Black and African American individuals, causes severe pain episodes and can have significant health consequences, including organ damage and stroke. Ongoing clinical care and treatment have life changing and lifesaving benefits, but many adults and children living with SCD have missed clinical appointments. NICHQ is proud to announce a new initiative to spread recent research on a potential innovation for helping more patients with SCD access the care they need.

The research comes from a Mid-South Clinical Data Research Network study, funded by the Patient-Centered Outcomes Research Institute (PCORI), that found that addressing or adapting individual factors like age, health literacy, spirituality and financial security may help more SCD patients attend appointments. According to the Health Belief Model (HBM)—a widely used, theoretical model—these factors, among other psychological and demographic variables, affect health-related behaviors. The study’s findings suggest that acknowledging the role these factors play in missed SCD appointments can help health professional develop effective strategies to increase appointment attendance, such as by removing potential barriers for patients and motivating them to seek care.

NICHQ’s new initiative, Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model, seeks to disseminate these findings to a network of sickle cell disease stakeholders, including clinicians, families, and community advocates, so that more children and adults can receive clinical care. The initiative is funded by PCORI, the organization that also funded the original groundbreaking study.

“Patients with sickle cell disease already face so many challenges to their health—this study is momentous because it provides an opportunity to remove some of those barriers,” says NICHQ President and CEO Scott D. Berns, MD, MPH, FAAP. “After spending nearly a decade working to improve outcomes for children and families affected by sickle cell disease, NICHQ is incredibly energized by the potential impact of this initiative. We have a passionate and committed network of stakeholders, all of whom will be critical partners as we spread these findings across the nation.”

According to Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer, “This project was selected for Engagement Award funding because it will involve stakeholders in actively disseminating PCORI-funded research results to those who can use this information to inform healthcare decisions.  We look forward to working with NICHQ throughout the course of their two-year project.”

Over the course of the initiative, NICHQ will work with partners to disseminate the study’s findings through a series of webinars tailored to target audiences. NICHQ will also develop informative materials including an executive summary of the study’s findings and a video sharing stakeholder experiences. By tapping a diverse network of sickle cell disease stakeholders, many affiliated with the HRSA-funded Sickle Cell Disease Treatment Demonstration Regional Collaborative Program that NICHQ leads, NICHQ will ensure clinicians, community stakeholders, patients and families across the country learn about this critical new research.

“I am excited to partner with NICHQ and family partner Mrs. TaLana Hughes to disseminate this study’s findings and continue to work on efforts to ensure all individuals with sickle cell disease have access to high quality care,” says Suzette Oyeku, MD, MPH, NICHQ Medical Advisor and Division Chief, Academic General Pediatrics at Montefiore Health System/Children's Hospital at Montefiore.

For media inquiries, please contact:
Caitlin Forbes
Caitlin Forbes
NICHQ Communications Manager
cforbes@nichq.org or 617-391-2727