Investigator feedback about the 2005 NIH diagnostic and scoring criteria for chronic GVHD

The 2005 National Institutes of Health (NIH) consensus criteria for chronic graft-versus-host disease (cGVHD) have set standards for reporting. Many questions, however, have arisen regarding implementation and utilization. To identify perceived areas of controversy, we conducted an international survey on diagnosis and scoring of cGVHD. Agreement was observed for 50% to 83% of the 72 questions in 7 topic areas. There was agreement in the need for modifying criteria in 6 situations: 2 or more distinctive manifestations should be enough to diagnose cGVHD, symptoms not due to cGVHD should be scored differently, active disease and fixed deficits should be distinguished, a minimum threshold body surface area of hidebound skin involvement should be required for a skin score 3, asymptomatic oral lichenoid changes should be considered a score 1, and lung biopsy should be unnecessary to diagnose cGVHD in a patient with bronchiolitis obliterans as the only manifestation. The survey also identified 26 points of controversy. Whenever possible, studies should be conducted to confirm the appropriateness of any revisions. In cases where data are not available, clarification of the NIH recommendations by consensus is necessary. This survey should inform future research in the field and revisions of the current consensus criteria.