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

Biol Blood Marrow Transplant. 2017 May;23(5):717-725. doi: 10.1016/j.bbmt.2016.09.025. Epub 2016 Oct 3.


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 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, is required.

Keywords: Care delivery models; Healthcare value; Hematopoietic cell transplantation; Late Effects Consensus Conference; National Institutes of Health; Survivorship.

Publication types

  • Review

MeSH terms

  • Bone Marrow Transplantation / adverse effects
  • Bone Marrow Transplantation / methods*
  • Bone Marrow Transplantation / standards
  • Databases, Factual*
  • Delivery of Health Care / methods*
  • Delivery of Health Care / trends
  • Hematopoietic Stem Cell Transplantation / adverse effects
  • Hematopoietic Stem Cell Transplantation / methods*
  • Hematopoietic Stem Cell Transplantation / standards
  • Humans
  • Long Term Adverse Effects
  • National Institutes of Health (U.S.)*
  • Research Design*
  • Survivors
  • United States