Ellen M. Denzen

Costs of autologous and allogeneic hematopoietic cell transplantation in the United States: a study using a large National Private Claims Database

There is a lack of multi-center cost-identification studies for hematopoietic cell transplantation (HCT). We used a single longitudinal administrative claims database representing a national, commercially insured population to evaluate the feasibility of identifying HCT recipients and to establish a cohort of autologous and allogeneic HCT recipients to study inpatient and outpatient direct medical costs from transplant hospitalization through first 100 days post-transplantation. Using ICD-9 procedure and diagnosis codes, we identified 3365 patients who had received their first transplant in the United States between 2007 and 2009 (autologous, 1678, allogeneic, 1320, graft source not specified, 367). The median 100-day total costs for autologous HCT were

Costs and Cost-Effectiveness of Hematopoietic Cell Transplantation

99 899 (interquartile range (IQR),

Access to Hematopoietic-cell Transplantation in the United States

73 914–140 555), and for allogeneic HCT were

Racial disparities in hematopoietic cell transplantation in the United States

203 026 (IQR,

Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation

141 742–316 426). The majority of costs (>75%) occurred during the initial transplant hospitalization for both autologous and allogeneic HCT recipients. Costs were greater among pediatric (⩽20 years) compared with adult (>20 years) recipients and this difference was more pronounced with allogeneic HCT. Using a claims database representing a national HCT population, we highlight the high costs associated with autologous and allogeneic HCT. Our study lays the foundation for using claims data for future research on economic aspects of HCT.

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report

Interest is growing in economic and comparative effectiveness analyses, with increasing emphasis on optimizing healthcare resources and costs. Limited information is available on the economic aspects of hematopoietic cell transplantation (HCT). We review contemporary literature on the costs and cost-effectiveness of HCT in the United States and worldwide. Published studies confirm the high costs associated with HCT, although the reported costs are highly variable, related to the differing methodologies used across studies. We examine the challenges in reviewing costs and cost-effectiveness across studies specific to HCT and highlight factors identified as associated with higher costs of HCT. We also discuss opportunities for future research in this area.

National Survey of Hematopoietic Cell Transplantation Center Personnel, Infrastructure, and Models of Care Delivery

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.

Easy-to-Read Informed Consent Forms for Hematopoietic Cell Transplantation Clinical Trials

Hematopoietic cell transplantation (HCT) is a highly specialized, expensive and resource-intense medical procedure that can be associated with racial disparities. We review the prevailing literature on racial disparities in HCT in the United States and describe areas for future research and interventions. We discuss the complexity of interpreting race as a biological and social determinant of disease in biomedical research, especially as it relates to HCT. In the United States, race is often a surrogate for socioeconomic, education and health insurance status. We also discuss some of the nuances to consider while reviewing the literature on racial disparities. Disparities by race exist in three areas related to HCT: donor availability, access to HCT and outcomes of HCT. African-Americans/Blacks have a lower likelihood of finding an unrelated donor. Race and ethnicity definitions are country-specific and reconciling race data can represent significant challenges to unrelated donor registries worldwide. African-Americans/Blacks do not have the same access to autologous and allogeneic HCT as Whites. Racial disparities in outcomes of HCT are more prevalent among allogeneic HCT than autologous HCT recipients. More research is required to understand the biological, social, cultural, medical and financial aspects of race that may influence access to HCT and survival after transplantation. Better understanding of racial disparities will minimize inequities, inform health policy, guide development of interventions targeted to eliminate disparities and ensure equitable access to HCT for all populations.

Barriers to hematopoietic cell transplantation clinical trial participation of African American and black youth with sickle cell disease and their parents

Patient/caregiver out-of pocket costs associated with hematopoietic cell transplantation (HCT) are not well known. We conducted a pilot study to evaluate patient/caregiver out-of-pocket costs in the first 3 months after allogeneic HCT. Thirty patients were enrolled at three sites. Before HCT, participants completed a baseline survey regarding household income and insurance coverage. Subsequently, they maintained a paper-based diary to track daily out-of-pocket expenses for the first 3 months after HCT. Telephone interviews were conducted to follow-up on the missing/incomplete diaries and on study completion. Twenty-five patients/caregivers completed the baseline survey. Among these, the median pre-tax household income was

Variation in Medicaid Coverage for Hematopoietic Cell Transplantation

66 500 (range,