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

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

Author information

1
Mayo Clinic, Rochester, Minnesota.
2
Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada.
3
Hospital Universitario Puerta de Hierro Majadahonda, Madrid, Spain.
4
National Marrow Donor Program, Minneapolis, Minnesota.
5
Moffitt Cancer Center, Tampa, Florida.
6
National Heart, Lung and Blood Institute, Bethesda, Maryland.
7
Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington.
8
Oregon Health Sciences University, Portland, Oregon.
9
Health Resources and Services Administration, Rockville, Maryland.
10
Vanderbilt University, Nashville, Tennessee.
11
Anthem WellPoint, Atlanta, Georgia.
12
Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin, Milwaukee, Wisconsin.
13
Nebraska Medicine, Omaha, Nebraska.
14
Cleveland Clinic, Cleveland, Ohio. Electronic address: majhain@ccf.org.

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.

KEYWORDS:

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

PMID:
27713091
PMCID:
PMC5378687
DOI:
10.1016/j.bbmt.2016.09.025
[Indexed for MEDLINE]
Free PMC Article

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