title: 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 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.
authors.affiliation: Mayo Clinic, Rochester, Minnesota.
authors.forename: Shahrukh K
authors.initials: SK
authors.lastname: Hashmi
authors.affiliation: Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada.
authors.forename: Christopher
authors.initials: C
authors.lastname: Bredeson
authors.affiliation: Hospital Universitario Puerta de Hierro Majadahonda, Madrid, Spain.
authors.forename: Rafael F
authors.initials: RF
authors.lastname: Duarte
authors.affiliation: National Marrow Donor Program, Minneapolis, Minnesota.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Farnia
authors.affiliation: Moffitt Cancer Center, Tampa, Florida.
authors.forename: Susan
authors.initials: S
authors.lastname: Ferrey
authors.affiliation: National Heart, Lung and Blood Institute, Bethesda, Maryland.
authors.forename: Courtney
authors.initials: C
authors.lastname: Fitzhugh
authors.affiliation: Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington.
authors.forename: Mary E D
authors.initials: MED
authors.lastname: Flowers
authors.affiliation: Oregon Health Sciences University, Portland, Oregon.
authors.forename: James
authors.initials: J
authors.lastname: Gajewski
authors.affiliation: Mayo Clinic, Rochester, Minnesota.
authors.forename: Dennis
authors.initials: D
authors.lastname: Gastineau
authors.affiliation: Health Resources and Services Administration, Rockville, Maryland.
authors.forename: Melissa
authors.initials: M
authors.lastname: Greenwald
authors.affiliation: Vanderbilt University, Nashville, Tennessee.
authors.forename: Madan
authors.initials: M
authors.lastname: Jagasia
authors.affiliation: Anthem WellPoint, Atlanta, Georgia.
authors.forename: Patricia
authors.initials: P
authors.lastname: Martin
authors.affiliation: Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin, Milwaukee, Wisconsin.
authors.forename: J Douglas
authors.initials: JD
authors.lastname: Rizzo
authors.affiliation: Nebraska Medicine, Omaha, Nebraska.
authors.forename: Kimberly
authors.initials: K
authors.lastname: Schmit-Pokorny
authors.affiliation: Cleveland Clinic, Cleveland, Ohio. Electronic address: majhain@ccf.org.
authors.forename: Navneet S
authors.initials: NS
authors.lastname: Majhail
mesh_terms: D016026:Bone Marrow Transplantation / Q000009:adverse effects / Q000379:methods* / Q000592:standards; D016208:Databases, Factual; D003695:Delivery of Health Care / Q000379:methods* / Q000639:trends; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects / Q000379:methods* / Q000592:standards; D006801:Humans; D000069451:Long Term Adverse Effects; D009316:National Institutes of Health (U.S.); D012107:Research Design; D017741:Survivors; D014481:United States
keywords: Care delivery models; Healthcare value; Hematopoietic cell transplantation; Late Effects Consensus Conference; National Institutes of Health; Survivorship