Barriers to Hematopoietic Cell Transplantation Clinical Trial Participation of African American and Black Youth With Sickle Cell Disease and Their Parents

• Type of Material: Article
• Authors: Nancy Atieno Omondi, National Marrow Donor Program; Stacy E. Stickney Ferguson, National Marrow Donor Program; Navneet S. Majhail, National Marrow Donor Program; Ellen M. Denzen, National Marrow Donor Program; George R. Buchanan, University of Texas; Ann Haight, Emory University; Richard J. Labotka, University of Illinois; J. Douglas Rizzo, Medical College of Wisconsin; Elizabeth A. Murphy, National Marrow Donor Program
• Language: English
• Date: 2013-05-01
• Publisher: Lippincott, Williams & Wilkins
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2013 by Lippincott Williams & Wilkins.
• Final Published Version (URL): http://dx.doi.org/10.1097/MPH.0b013e31828d5e6a
• Title of Journal or Parent Work: Journal of Pediatric Hematology/Oncology
• ISSN: 1077-4114
• Volume: 35
• Issue: 4
• Start Page: 289
• End Page: 298
• Grant/Funding Information: This study was funded by the National Marrow Donor Program; No honorarium, grant, or other form of payment was given to anyone to produce the manuscript.
• Keywords: clinical trial participation; hematopoietic cell transplantation; HYDROXYUREA; SATISFACTION; Science & Technology; Life Sciences & Biomedicine; TRUST; Pediatrics; ADULTS; MISTRUST; ANEMIA; Oncology; mistrust; sickle cell disease; Hematology; focus groups; MARROW TRANSPLANTATION
• Research Categories: Health Sciences, Oncology; Sociology, Ethnic and Racial Studies; Health Sciences, Pathology

Abstract

African Americans and Blacks have low participation rates in clinical trials and reduced access to aggressive medical therapies. Hematopoietic cell transplantation (HCT) is a high-risk but potentially curative therapy for sickle cell disease (SCD), a disorder predominantly seen in African Americans. We conducted focus groups to better understand participation barriers to HCT clinical trials for SCD. Nine focus groups of youth with SCD (n=10) and parents (n=41) were conducted at 3 sites representing the Midwest, South Atlantic, and West South Central US. Main barriers to clinical trial participation included gaps in knowledge about SCD, limited access to SCD/HCT trial information, and mistrust of medical professionals. For education about SCD/HCT trials, participants highly preferred one-on-one interactions with medical professionals and electronic media as a supplement. Providers can engage with sickle cell camps to provide information on SCD/HCT clinical trials to youth and local health fairs for parents/families. Youth reported learning about SCD through computer games; investigators may find this medium useful for clinical trial/HCT education. African Americans affected by SCD face unique barriers to clinical trial participation and have unmet HCT clinical studies education needs. Greater recognition of these barriers will allow targeted interventions in this community to increase their access to HCT.