Barriers to hematopoietic cell transplantation clinical trial participation of african american and black youth with sickle cell disease and their parents.

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.

Allogeneic transplant physician and center capacity in the United States.

Shortage of manpower and center capacity is expected to be a major challenge to the anticipated future growth in the utilization of allogeneic hematopoietic cell transplantation (HCT) in the United States. Using data from the National Marrow Donor Program's Transplant Center Network Renewal Survey, we describe transplant center and transplant physician capacity in the United States from 2005 to 2009. Over this 5-year period, the number of allogeneic transplants increased by 30%, bed capacity increased by 17%, and physician full-time equivalents increased by 26%. The number of related donor HCT increased by 15% and unrelated donor HCT increased by 45%. In addition to large centers, small- and medium-sized centers also made a major contribution to overall national transplant volumes for both related and unrelated donor HCT. Increase in utilization of unrelated donor HCT occurred in centers irrespective of their size. The majority of transplant centers were performing more transplantations using existing physician and bed capacity. Our study provides important descriptions of allogeneic transplant activity and capacity of U.S. centers, and our data will assist policy makers plan for the projected growth in the use of transplantation.

Evaluating patient satisfaction with the Office of Patient Advocacy.

Patient satisfaction is an important indicator of healthcare quality. Blood and marrow transplantation is a complex but potentially curative procedure for patients with life-threatening hematologic disorders. The Office of Patient Advocacy provides services and health education materials to transplant patients, caregivers, and family members. Satisfaction surveys help identify the specific needs of patients. This article reports findings from surveys administered to patients and family members. Key evaluation areas included: helpfulness of information and services provided and overall satisfaction with Coordinator services. Respondents were asked to describe follow-up actions taken as a result of the information/services provided and to recommend ways to improve these services. Transplant patients face complex treatment with high risks of morbidity, which may impact likelihood of survey response. The findings indicate that satisfied respondents were more likely to self advocate through follow-up actions. Respondent feedback was useful for improving Office of Patient Advocacy services.

Access to hematopoietic cell transplantation in the United States.

Hematopoietic cell transplantation (HCT) is a highly specialized and resource-intense medical procedure that can be associated with disparities in access to transplantation. Barriers to access to HCT are multifactorial, complex, and interrelated. Our current knowledge of specific barriers that prevent access to HCT is very limited. As the utilization of HCT increases, it is imperative that underserved populations receive the benefit of this life-saving procedure. We review the prevailing literature on access to HCT and describe research priorities for eliminating disparities in transplantation. Better understanding of these complex barriers will minimize inequities, inform health policy, guide development of interventions targeted to eliminate disparities, and continue the expansion of HCT in the future.