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. Guilbault & 20 others S. Gulliver, C. Harris, C. Harvent, K. Houston, Joslyn Sciacca 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

Research output: Contribution to journalArticle

10 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)715-721
Number of pages7
JournalBritish Journal of Dermatology
Volume178
Issue number3
DOIs
StatePublished - Mar 1 2018

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Hidradenitis Suppurativa
Consensus
Research
Health Care Surveys
Drug Industry
Pain Measurement
Quality of Life
Clinical Trials
Interviews

All Science Journal Classification (ASJC) codes

  • Dermatology

Cite this

Thorlacius, L., Garg, A., Ingram, J. R., Villumsen, B., Theut Riis, P., Gottlieb, A. B., ... Jemec, G. B. E. (2018). Towards global consensus on core outcomes for hidradenitis suppurativa research: an update from the HISTORIC consensus meetings I and II. British Journal of Dermatology, 178(3), 715-721. https://doi.org/10.1111/bjd.16093
Thorlacius, L. ; Garg, A. ; Ingram, J. R. ; Villumsen, B. ; Theut Riis, P. ; Gottlieb, A. B. ; Merola, J. F. ; Dellavalle, R. ; Ardon, C. ; Baba, R. ; Bechara, F. G. ; Cohen, A. D. ; Daham, N. ; Davis, M. ; Emtestam, L. ; Fernández-Peñas, P. ; Filippelli, M. ; Gibbons, A. ; Grant, T. ; Guilbault, S. ; Gulliver, S. ; Harris, C. ; Harvent, C. ; Houston, K. ; Sciacca Kirby, Joslyn ; Matusiak, L. ; Mehdizadeh, A. ; Mojica, T. ; Okun, M. ; Orgill, D. ; Pallack, L. ; Parks-Miller, A. ; Prens, E. P. ; Randell, S. ; Rogers, C. ; Rosen, C. F. ; Choon, S. E. ; van der Zee, H. H. ; Christensen, R. ; Jemec, G. B.E. / Towards global consensus on core outcomes for hidradenitis suppurativa research : an update from the HISTORIC consensus meetings I and II. In: British Journal of Dermatology. 2018 ; Vol. 178, No. 3. pp. 715-721.
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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.",
author = "L. Thorlacius and A. Garg and Ingram, {J. R.} and B. Villumsen and {Theut Riis}, P. and Gottlieb, {A. B.} and Merola, {J. F.} and R. Dellavalle and C. Ardon and R. Baba and Bechara, {F. G.} and Cohen, {A. D.} and N. Daham and M. Davis and L. Emtestam and P. Fern{\'a}ndez-Pe{\~n}as and M. Filippelli and A. Gibbons and T. Grant and S. Guilbault and S. Gulliver and C. Harris and C. Harvent and K. Houston and {Sciacca Kirby}, Joslyn and L. Matusiak and A. Mehdizadeh and T. Mojica and M. Okun and D. Orgill and L. Pallack and A. Parks-Miller and Prens, {E. P.} and S. Randell and C. Rogers and Rosen, {C. F.} and Choon, {S. E.} and {van der Zee}, {H. H.} and R. Christensen and Jemec, {G. B.E.}",
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Thorlacius, L, Garg, A, Ingram, JR, Villumsen, B, Theut Riis, P, Gottlieb, AB, Merola, JF, Dellavalle, R, Ardon, C, Baba, R, Bechara, FG, Cohen, AD, Daham, N, Davis, M, Emtestam, L, Fernández-Peñas, P, Filippelli, M, Gibbons, A, Grant, T, Guilbault, S, Gulliver, S, Harris, C, Harvent, C, Houston, K, Sciacca Kirby, J, Matusiak, L, Mehdizadeh, A, Mojica, T, Okun, M, Orgill, D, Pallack, L, Parks-Miller, A, Prens, EP, Randell, S, Rogers, C, Rosen, CF, Choon, SE, van der Zee, HH, Christensen, R & Jemec, GBE 2018, 'Towards global consensus on core outcomes for hidradenitis suppurativa research: an update from the HISTORIC consensus meetings I and II', British Journal of Dermatology, vol. 178, no. 3, pp. 715-721. https://doi.org/10.1111/bjd.16093

Towards global consensus on core outcomes for hidradenitis suppurativa research : an update from the HISTORIC consensus meetings I and II. / Thorlacius, L.; Garg, A.; Ingram, J. R.; Villumsen, B.; Theut Riis, P.; Gottlieb, A. B.; Merola, J. F.; Dellavalle, R.; Ardon, C.; Baba, R.; Bechara, F. G.; Cohen, A. D.; Daham, N.; Davis, M.; Emtestam, L.; Fernández-Peñas, P.; Filippelli, M.; Gibbons, A.; Grant, T.; Guilbault, S.; Gulliver, S.; Harris, C.; Harvent, C.; Houston, K.; Sciacca Kirby, Joslyn; Matusiak, L.; Mehdizadeh, A.; Mojica, T.; Okun, M.; Orgill, D.; Pallack, L.; Parks-Miller, A.; Prens, E. P.; Randell, S.; Rogers, C.; Rosen, C. F.; Choon, S. E.; van der Zee, H. H.; Christensen, R.; Jemec, G. B.E.

In: British Journal of Dermatology, Vol. 178, No. 3, 01.03.2018, p. 715-721.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Towards global consensus on core outcomes for hidradenitis suppurativa research

T2 - an update from the HISTORIC consensus meetings I and II

AU - Thorlacius, L.

AU - Garg, A.

AU - Ingram, J. R.

AU - Villumsen, B.

AU - Theut Riis, P.

AU - Gottlieb, A. B.

AU - Merola, J. F.

AU - Dellavalle, R.

AU - Ardon, C.

AU - Baba, R.

AU - Bechara, F. G.

AU - Cohen, A. D.

AU - Daham, N.

AU - Davis, M.

AU - Emtestam, L.

AU - Fernández-Peñas, P.

AU - Filippelli, M.

AU - Gibbons, A.

AU - Grant, T.

AU - Guilbault, S.

AU - Gulliver, S.

AU - Harris, C.

AU - Harvent, C.

AU - Houston, K.

AU - Sciacca Kirby, Joslyn

AU - Matusiak, L.

AU - Mehdizadeh, A.

AU - Mojica, T.

AU - Okun, M.

AU - Orgill, D.

AU - Pallack, L.

AU - Parks-Miller, A.

AU - Prens, E. P.

AU - Randell, S.

AU - Rogers, C.

AU - Rosen, C. F.

AU - Choon, S. E.

AU - van der Zee, H. H.

AU - Christensen, R.

AU - Jemec, G. B.E.

PY - 2018/3/1

Y1 - 2018/3/1

N2 - 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.

AB - 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.

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