Trends in HCT Equity, Access and Outcomes
NMDP Explore Cell Therapy podcast season 2, episode 10
In this two-part "NMDP Explore Cell Therapy" podcast episode, Rachel Phelan, MD, MPH, and Rafeek Yusuf, MD, PhD, discuss the latest trends in access and outcomes by race and ethnicity in allogeneic hematopoietic cell transplantation (HCT) according to their recent report conducted by CIBMTR® (Center for International Blood and Marrow Transplant Research®) a research collaboration between the Medical College of Wisconsin® and NMDPSM.
Listen as they illuminate significant strides in graft-versus-host disease (GVHD) prevention and the use of haploidentical and mismatched unrelated donor sources to close gaps in equity. Together, we explore the multifaceted barriers hindering equitable transplantation—from socioeconomic and health literacy challenges to donor availability. Our expert guests highlight the importance of holistic, personalized care throughout the patient journey as we navigate the complexities of transplantation, advocate for precision medicine, and envision a future with even more inclusive and effective health care solutions.
Key takeaways
- Trends and disparities in transplantation: There's an observed trend in the increasing use of haploidentical donors (from 6% in 2013 to 24% in 2020), highlighting advancements in transplantation. However, significant racial and ethnic disparities persist in donor accessibility and utilization, particularly for non-white patients.
- Barriers to access and utilization: Several factors hinder equitable access to transplantation, including HLA and non-HLA barriers (socioeconomic status, health literacy, insurance coverage), caregiver burnout, and the reluctance to refer older patients. These barriers complicate the referral process and affect patient enrollment in clinical trials and transplant programs.
- Improvements and continuing challenges in transplant outcomes: There has been progress in overall survival and GVHD prevention across all races and ethnicities. However, disparities in GVHD risk among different racial and ethnic groups still need to be addressed, underscoring the need for ongoing efforts to reduce inequities in transplantation outcomes.
- The importance of holistic and personalized care: Emphasis should be placed on the entire patient journey, from diagnosis to long-term post-transplant care. This approach includes considering patients' unique backgrounds and challenges, enhancing care coordination, and using telemedicine to improve access. Personalized care and comprehensive survivorship plans can help.
- Future directions and continuous improvement: The field is evolving with new clinical trials and research focusing on alternative donor sources and patient care strategies. There's a call for more regular and detailed analysis of transplant data, considering social determinants of health to better understand and address the disparities and gaps in transplant care. The importance of precision medicine and personalized care is vital for future advancements.
This episode's expert guests
Associate Professor of Pediatrics, Blood and Marrow Transplantation
Medical College of Wisconsin
Director, Health Services Research
NMDP
Dr. Phelan has an interest in late effects and survivorship care following childhood cancer and HCT. She is the director of the Next Steps Survivorship Program at Children’s Wisconsin and also serves as the scientific director of the Morbidity, Recovery and Survivorship Working Committee at the CIBMTR.
Dr. Yusuf serves as scientific director of the CIBMTR Donor and Recipient Health Services Working Committee and co-chair of the ACCESS Initiative Racial & Ethnic Inequities Committee. He has 20+ years combined health services, epidemiology, informatics, and clinical practice experience in academic medical centers, hospitals, long-term care facilities, and state and local public health departments.
Featured article discussed in this episode
- Real-World Data Showing Trends and Outcomes by Race and Ethnicity in Allogeneic Hematopoietic Cell Transplantation: A Report from the Center for International Blood and Marrow Transplant Research (Transplantation and Cellular Therapy, June 2023)
Resources for hematology/oncology and transplant physicians
HCT Guidelines app
The new and improved HCT Guidelines app features our latest HCT Consultation Timing Guidelines, Post-Transplant Care Guidelines, tips to help identify GVHD, CME opportunities and more.
Transplant Center Directory for hematology/oncology physicians
This searchable database provides details on the transplant centers, such as center contact information, number of transplants by cell source, patient survival information and more.
Access the Transplant Center Directory
CIBMTR® Summary Slides and Reports
Use summarized CIBMTR data on outcomes and trends for clinical decision-making, presentations and research planning. CIBMTR is a research collaboration between the Medical College of Wisconsin® and NMDPSM.
Resources for your patients
NMDP Patient Support Center
Patients, caregivers and families receive free support, information and resources before and after transplant from our NMDP Patient Support Center team.
Get Patient Support Center details
Jason Carter Clinical Trials Search and Support (CTSS)
The CTSS program helps patients find and join clinical trials through one-on-one support and an easy-to-navigate website. Patients can receive financial assistance to help pay for travel costs to participate in a clinical trial.