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

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

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  • 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 Guilbault
  • S 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
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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
TidsskriftBritish Journal of Dermatology
Vol/bind178
Udgave nummer3
Sider (fra-til)715-721
Antal sider7
ISSN0007-0963
DOI
StatusUdgivet - mar. 2018

ID: 53652691