A United States expert consensus to standardise definitions, follow‐up, and treatment targets for extra‐intestinal manifestations in inflammatory bowel disease

Abstract

Summary Background and aims Extra‐intestinal manifestations (EIMs) are a common complication of inflammatory bowel diseases (IBD), affecting up to half of the patients. Despite their high prevalence, information on standardised definitions, diagnostic strategies, and treatment targets is limited. Methods As a starting point for a national EIM study network, an interdisciplinary expert panel of 12 gastroenterologists, 4 rheumatologists, 3 ophthalmologists, 6 dermatologists, and 4 patient representatives was assembled. Modified Delphi consensus methodology was used. Fifty‐four candidate items were derived from the literature review and expert opinion focusing on five major EIMs (erythema nodosum, pyoderma gangrenosum, uveitis, peripheral arthritis, and axial arthritis) were rated in three voting rounds. Results For use in a clinical practice setting and as part of the creation of a prospective registry of patients with EIMs, the panel developed definitions for erythema nodosum, pyoderma gangrenosum, uveitis, peripheral arthritis, and axial arthritis; identified the appropriate and optimal subspecialists to diagnose and manage each; provided methods to monitor disease course; offered guidance regarding monitoring intervals; and defined resolution and recurrence. Conclusions Consensus criteria for appropriate and optimal means of diagnosing and monitoring five EIMs have been developed as a starting point to inform clinical practice and future trial design. Key findings include straightforward diagnostic criteria, guidance regarding who can appropriately and optimally diagnose each, and monitoring options that include patient and physician‐reported outcomes. These findings will be used in a national multicenter study network to optimise the management of EIMs.

Editorial: shedding new light on extraintestinal manifestations in inflammatory bowel disease

“…3 A few years later, with the vedolizumab approval, the concept of gut-selectivity raised some concerns about the efficacy of new biologics for EIMs. 4 After a three-step meeting, Falloon et al 5 proposed some guidance for diagnosis, management and follow-up on five major EIMs: erythema nodosum, pyoderma gangrenosum, uveitis, peripheral arthritis and axial arthritis. 5 This US (United States) consensus involved 12 IBD specialists, four rheumatologists, three ophthalmologists, six dermatologists and four patient representatives.…”

“…Except for psoriasis and arthralgia, both consensus meetings focused on the same EIM. 5,9 The main difference lies in the need for a dedicated specialist for the diagnosis of erythema nodosum and peripheral arthritis. Falloon et al 5 considered that an IBD specialist can clinically diagnose these situations, while the IOIBD consensus 9 clearly stated a proper diagnosis by the organ specialist is needed for a robust and accurate assessment of EIMs in IBD trials.…”

Editorial: shedding new light on extraintestinal manifestations in inflammatory bowel disease—authors’ reply

“…While this remains to be shown, we feel it is likely that our findings can be extrapolated to medical practice outside of the US given that IBD care in the Western world shows a high degree of alignment 6–10 . This is further highlighted by the large agreement found across our as well as the EXTRA consensus statements 2,3 …”

“…We agree with the EXTRA authors regarding the complimentary but distinct goals of our two initiatives 2,3 . The EXTRA consensus was designed specifically to identify EIM endpoints for use in clinical trials 1 .…”

“…Our modified Delphi consensus panel provides guidance for the practicing clinician while building a robust framework for conducting observational studies in this space. In collaboration with patient representatives, our consensus provides detailed guidance regarding metrics that can be utilized to evaluate for EIM improvement, worsening, resolution, and recurrence 3 . These additional metrics are complimentary to the EXTRA consensus findings.…”