title: Uptake and use of recommendations for the diagnosis, severity scoring and management of chronic GVHD: an international survey of the EBMT-NCI Chronic GVHD Task Force.
abstract: In 2005, the National Institutes of Health (NIH) consensus conference published a series of papers recommending methods to improve the conduct of clinical trials in chronic GVHD. Although the NIH recommendations were primarily aimed at strengthening research, several papers addressed issues relevant for clinical practice, particularly diagnosis, severity scoring, and ancillary and supportive care practices. We conducted an international survey to assess the uptake of these recommendations, identify barriers to greater use and document the use and perceived effectiveness of available treatments. The response rate for the American survey of 1387 practitioners was 21.8%, and it was 24.6% for 407 centers surveyed in Europe, Asia, Australia and Africa. Most respondents were familiar with the NIH consensus recommendations (94-96%) and used them in practice. Multiple barriers to greater use were reported. Besides lack of time (55-62%), unfamiliarity with the recommendations, scarcity of evidence supporting the impact of recommendations on outcomes, insufficient training/experience in chronic GVHD management and inaccessibility of subspecialists were also endorsed. Systemic corticosteroids were reported to be the most effective treatment for chronic GVHD, but many others were perceived to have moderate or great success. Therapeutic management of steroid-refractory chronic GVHD was identified as the highest priority for research.
authors: Department of Hematology, Catalan Institute of Oncology-Hospital Duran I Reynals, Barcelona, Spain.
authors: R F
authors: RF
authors: Duarte
authors: Department of Internal Medicine I, Bone Marrow Transplantation, Medical University of Vienna, Vienna, Austria.
authors: H
authors: H
authors: Greinix
authors: Institute for Health Research, Kaiser Permanente, Denver, CO, USA.
authors: B
authors: B
authors: Rabin
authors: Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA.
authors: S A
authors: SA
authors: Mitchell
authors: Department of Hematology, Oncology and Internal Medicine, Medical University of Warsaw, Warsaw, Poland.
authors: G
authors: G
authors: Basak
authors: Department of Internal Medicine III, University of Regensburg, Regensburg, Germany.
authors: D
authors: D
authors: Wolff
authors: Anthony Nolan Research Institute, Royal Free Hospital, London, UK.
authors: J A
authors: JA
authors: Madrigal
authors: Experimental Transplantation and Immunology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, USA.
authors: S Z
authors: SZ
authors: Pavletic
authors: Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA.
authors: S J
authors: SJ
authors: Lee
mesh_terms: D002908:Chronic Disease; D002986:Clinical Trials as Topic / Q000592:standards* / Q000639:trends; D015975:Consensus Development Conferences, NIH as Topic; D003625:Data Collection; D019468:Disease Management; D006086:Graft vs Host Disease / Q000175:diagnosis / Q000628:therapy*; D006405:Hematology / Q000592:standards* / Q000639:trends; D018380:Hematopoietic Stem Cell Transplantation / Q000592:standards*; D006801:Humans; D007391:International Cooperation; D009316:National Institutes of Health (U.S.); D017410:Practice Guidelines as Topic; D014184:Transplantation, Homologous / Q000592:standards*; D016896:Treatment Outcome; D014481:United States
references: Biol Blood Marrow Transplant. 2010 Dec;16(12):1611-28
references: 20601036
references: Biol Blood Marrow Transplant. 2002;8(1):32-9
references: 11846354
references: Blood. 2011 Oct 13;118(15):4242-9
references: 21791424
references: Biol Blood Marrow Transplant. 2005 Dec;11(12):945-56
references: 16338616
references: Bone Marrow Transplant. 2013 Jan;48(1):63-7
references: 22705801
references: Biol Blood Marrow Transplant. 2011 Jan;17(1):1-17
references: 20685255
references: Blood. 2004 Oct 1;104(7):2194-200
references: 15198954
references: Blood. 2012 Sep 27;120(13):2545-52; quiz 2774
references: 22773386
references: Biol Blood Marrow Transplant. 2007 Oct;13(10):1207-15
references: 17889358
references: Biol Blood Marrow Transplant. 2013 Apr;19(4):632-9
references: 23340040
references: Biol Blood Marrow Transplant. 2006 May;12(5):491-505
references: 16635784
references: Biol Blood Marrow Transplant. 2011 Feb;17(2):167-75
references: 20691801
references: Biol Blood Marrow Transplant. 2006 Jan;12(1):31-47
references: 16399567
references: Biol Blood Marrow Transplant. 2006 Apr;12(4):375-96
references: 16545722
references: Leukemia. 2012 Apr;26(4):746-56
references: 21926960
references: Bone Marrow Transplant. 2009 Jan;43(2):149-53
references: 18794869
references: Biol Blood Marrow Transplant. 2011 Oct;17(10):1528-36
references: 21440079
references: Biol Blood Marrow Transplant. 2006 Feb;12(2):126-37
references: 16443511
references: Biol Blood Marrow Transplant. 2006 Mar;12(3):252-66
references: 16503494