Towards global consensus on core outcomes for hidradenitis suppurativa research: an update from the HISTORIC consensus meetings I and II

L. Thorlacius, A. Garg, J. R. Ingram*, B. Villumsen, P. Theut Riis, A. B. Gottlieb, J. F. Merola, R. Dellavalle, C. Ardon, R. Baba, F. G. Bechara, A. D. Cohen, N. Daham, M. Davis, L. Emtestam, P. Fernández-Peñas, M. Filippelli, A. Gibbons, T. Grant, S. GuilbaultS. Gulliver, C. Harris, C. Harvent, K. Houston, J. S. Kirby, L. Matusiak, A. Mehdizadeh, T. Mojica, M. Okun, D. Orgill, L. Pallack, A. Parks-Miller, E. P. Prens, S. Randell, C. Rogers, C. F. Rosen, S. E. Choon, H. H. van der Zee, R. Christensen, G. B.E. Jemec

*Corresponding author af dette arbejde

Publikation: Bidrag til tidsskriftArtikelForskningpeer review

Abstract

Background: A core outcomes set (COS) is an agreed minimum set of outcomes that should be measured and reported in all clinical trials for a specific condition. Hidradenitis suppurativa (HS) has no agreed-upon COS. A central aspect in the COS development process is to identify a set of candidate outcome domains from a long list of items. Our long list had been developed from patient interviews, a systematic review of the literature and a healthcare professional survey, and initial votes had been cast in two e-Delphi surveys. In this manuscript, we describe two in-person consensus meetings of Delphi participants designed to ensure an inclusive approach to generation of domains from related items. Objectives: To consider which items from a long list of candidate items to exclude and which to cluster into outcome domains. Methods: The study used an international and multistakeholder approach, involving patients, dermatologists, surgeons, the pharmaceutical industry and medical regulators. The study format was a combination of formal presentations, small group work based on nominal group theory and a subsequent online confirmation survey. Results: Forty-one individuals from 13 countries and four continents participated. Nine items were excluded and there was consensus to propose seven domains: disease course, physical signs, HS-specific quality of life, satisfaction, symptoms, pain and global assessments. Conclusions: The HISTORIC consensus meetings I and II will be followed by further e-Delphi rounds to finalize the core domain set, building on the work of the in-person consensus meetings.

OriginalsprogEngelsk
Sider (fra-til)715-721
Antal sider7
TidsskriftBritish Journal of Dermatology
Vol/bind178
Udgave nummer3
DOI
StatusUdgivet - mar. 2018

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