Faculty Collaboration Database

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

Date

10/08/2016

Pubmed ID

27713091

Pubmed Central ID

PMC5378687

DOI

10.1016/j.bbmt.2016.09.025

Scopus ID

2-s2.0-85006289219 (requires institutional sign-in at Scopus site)   45 Citations

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 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.

Author List

Hashmi SK, Bredeson C, Duarte RF, Farnia S, Ferrey S, Fitzhugh C, Flowers MED, Gajewski J, Gastineau D, Greenwald M, Jagasia M, Martin P, Rizzo JD, Schmit-Pokorny K, Majhail NS

Author

J. Douglas Rizzo MD, MS Director, Center Associate Director, Professor in the Medicine department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Bone Marrow Transplantation
Databases, Factual
Delivery of Health Care
Hematopoietic Stem Cell Transplantation
Humans
Long Term Adverse Effects
National Institutes of Health (U.S.)
Research Design
Survivors
United States