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Allografting

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

Bone Marrow Transplantation volume 49, pages 49–54 (2014)Cite this article

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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.

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Acknowledgements

We thank all the participating practitioners and centers, CIBMTR for providing contact information for the American survey and the EBMT administrative office for their help with survey distribution to EBMT centers. The Center for Global Health provided support for the initial meeting of the EBMT-NCI Chronic GVHD Task Force. This work was in part supported by the Center for Cancer Research, the intramural program of the National Cancer Institute, National Institutes of Health. The Chronic GVHD Consortium (U54 CA163438) is a part of the National Institutes of Health (NIH) Rare Diseases Clinical Research Network (RDCRN), supported through collaboration between the NIH Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Science (NCATS), and the National Cancer Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Authors and Affiliations

  1. Department of Hematology, Catalan Institute of Oncology–Hospital Duran I Reynals, Barcelona, Spain

    R F Duarte

  2. Department of Internal Medicine I, Bone Marrow Transplantation, Medical University of Vienna, Vienna, Austria

    H Greinix

  3. Institute for Health Research, Kaiser Permanente, Denver, CO, USA

    B Rabin

  4. Division of Cancer Control and Population Sciences, Outcomes Research Branch, Applied Research Program, National Cancer Institute, Bethesda, MD, USA

    S A Mitchell

  5. Department of Hematology, Oncology and Internal Medicine, Medical University of Warsaw, Warsaw, Poland

    G Basak

  6. Department of Internal Medicine III, University of Regensburg, Regensburg, Germany

    D Wolff

  7. Anthony Nolan Research Institute, Royal Free Hospital, London, UK

    J A Madrigal

  8. Experimental Transplantation and Immunology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, USA

    S Z Pavletic

  9. Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    S J Lee

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  1. R F Duarte
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  2. H Greinix
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  3. B Rabin
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  4. S A Mitchell
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  8. S Z Pavletic
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Correspondence to S J Lee.

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Competing interests

DW received a research grant from Novartis and Therakos, lecture fees from Fresenius and serves as consultant for Falk-Pharma. SJL was a consultant for Allergan. The other authors declare no conflict of interest.

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Duarte, R., Greinix, H., Rabin, B. et al. 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. Bone Marrow Transplant 49, 49–54 (2014). https://doi.org/10.1038/bmt.2013.129

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