National Institutes of Health Blood and Marrow Transplant Late Effects Initiative: The Healthcare Delivery Working Group Report

Abstract

Hematopoietic cell transplantation (HCT) survivors are at risk for development of late complications and require lifelong monitoring for screening and prevention of late effects. There is an increasing appreciation of the issues related to healthcare delivery and coverage that are faced by HCT survivors. The 2016 National Institutes of Health Blood and Marrow Transplant Late Effects Initiative included an international and broadly representative Healthcare Delivery Working Group that was tasked with identifying research gaps pertaining to healthcare delivery and to identify initiatives that may yield a better understanding of the long-term value and costs of care for HCT survivors. There is a paucity of literature in this area. Critical areas in need of research include pilot studies of novel and information technology supported models of care delivery and coverage for HCT survivors along with development and validation of instruments that capture patient reported outcomes. Investment in infrastructure to support this research such as linkage of databases including electronic health records and routine inclusion of endpoints that will inform analyses focused around care delivery and coverage are required.

Long‐term outcomes among 2‐year survivors of autologous hematopoietic cell transplantation for Hodgkin and diffuse large b‐cell lymphoma

“…Therefore, the low incidence of late morbidities in our sample was likely an underrepresentation of the patients' true symptom burden. Our results, in combination with prior data, support the need for continued long‐term follow‐up of patients after auto‐HCT to screen for late effects …”

“…Our results, in combination with prior data, support the need for continued long-term follow-up of patients after auto-HCT to screen for late effects. 22 The current study has some limitations that should be considered when we are interpreting the results. It used a retrospective cohort design, and specific drug and radiation dosing data were not available.…”

Healthcare Costs and Utilization for Patients Age 50 to 64 Years with Acute Myeloid Leukemia Treated with Chemotherapy or with Chemotherapy and Allogeneic Hematopoietic Cell Transplantation

“…29–31 Though not an option for MarketScan data, the possibility of linking claims databases to medical records or registries such as the Center for International Blood and Marrow Transplant Research (CIBMTR) may allow for clinical risk factors and outcomes of transplant recipients to be explored in the future within the context of costs. 32,33 …”

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: Developing Recommendations to Improve Survivorship and Long-Term Outcomes

“…Each working group topic was presented and discussed during a 90-minute session with ample time for comment and feedback on the recommendations 15 . The manuscripts were revised based on public comment prior to submission for publication 16–21 .…”