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Study Team

Stephanie Guarino, Center for Special Health Care Needs Sickle Cell Program, Christiana Care (PI); Vanessa Patel, ChristianaCare (Co-I); Charmaine Wright, Center for Special Health Care Needs, Christiana Care (Co-I); Peter Mende-Siedlecki, University of Pennsylvania (Co-I); Sophie Lanzkron (Mentor), Johns Hopkins University; Lee Pachter, ChristianaCare (Mentor)

What we wanted to learn and why it matters

Sickle cell disease impacts more than 100,000 Americans and about 400 patients, primarily African Americans, in Delaware. About a third of sickle cell patients have daily pain and about half have chronic pain. Both lead to poorer quality of life and higher health care utilization. Our research will adapt a peer-led curriculum for chronic pain self-management program for patients with sickle cell disease and assess its acceptability with adult sickle cell patients in Delaware. We will engage patients with sickle cell disease in the adaptation of the peer-led curriculum and as advisors throughout the research study. We will also survey adults patients with sickle cell about their experiences of racism, discrimination and examine relationships between these experiences and pain and disease manifestations and health care use.

What we did and learned

This study was recently funded and is in progress. We have established a Stakeholder Advisory Board of patients with sickle cell disease and caregivers of persons with sickle cell disease and health care providers and are interviewing patients with sickle cell disease about their needs and the acceptability of an existing pain self-management program. We have conducted our patient survey.

To read more about this study