Which outcomes should be measured in hand eczema trials? Results from patient interviews and an expert survey

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• dc.contributor.author Rönsch, Henriette
• dc.contributor.author Schiffers, Frederike
• dc.contributor.author Ofenloch, Robert
• dc.contributor.author Weisshaar, Elke
• dc.contributor.author Buse, Anna-Sophie
• dc.contributor.author Hansen, Andreas
• dc.contributor.author John, Swen Malte
• dc.contributor.author Giménez Arnau, Anna Maria
• dc.contributor.author Pesqué, David
• dc.contributor.author Agner, Tove
• dc.contributor.author Nørreslet, Line Brok
• dc.contributor.author Loman, Laura
• dc.contributor.author Romeijn, Geertruida L. E.
• dc.contributor.author Schuttelaar, Marie-Louise A.
• dc.contributor.author Košćec Bjelajac, Adrijana
• dc.contributor.author Macan, Jelena
• dc.contributor.author Bauer, Andrea
• dc.contributor.author Apfelbacher, Christian J.
• dc.date.accessioned 2023-09-20T06:53:37Z
• dc.date.available 2023-09-20T06:53:37Z
• dc.date.issued 2023
• dc.description.abstract Background: Hand eczema (HE) is a common skin disease characterized by itch, pain and visible skin changes such as fissures, erythema and vesicles. It is not yet clear which outcome domains are most important for patients. The Hand Eczema Core Outcome Set (HECOS) initiative is developing a consented set of core domains and suitable measurement instruments for the future application in all HE trials. This includes an online Delphi survey about core domains, which requires a 'Long List' of all domains that might be important to measure. Objectives: To compile a 'Long List' of candidate outcome domains for therapeutic HE trials with suggestions from patients and experts. Methods: First, 60 patients with chronic HE were interviewed at seven study sites in Croatia, Denmark, Germany, the Netherlands and Spain. Patients were asked about domains that were important from their perspectives. Second, 185 HE experts were invited by email to complete an online survey. With an open question, they were asked to suggest up to six domains. Results: Suggestions were provided by 58 patients and 82 experts. Most patients and experts suggested to measure the domains 'signs', 'symptoms' and 'HE-related quality of life'. Specifically, >25% of patients said that less itch, pain or fissures indicated a successful treatment. Among experts, >25% suggested 'itch' and 'ability to work' as core sub-domains. Further outcomes from the domains 'HE control over time', 'patient-reported treatment experience' and 'skin barrier function' were mentioned. Conclusion: 'Itch' was rated high among patients with HE and professional HE experts. While patients emphasized fissures as important, experts underlined the ability to work. This investigation allowed us to define a 'Long List' of 7 candidate outcome domains with 58 sub-domains. From this list, a panel of stakeholders will select core domains during an online Delphi survey.
• dc.format.mimetype application/pdf
• dc.identifier.citation Rönsch H, Schiffers F, Ofenloch R, Weisshaar E, Buse AS, Hansen A, John SM, Giménez Arnau AM, Pesqué D, Agner T, Brok Nørreslet L, Loman L, Romeijn GLE, Schuttelaar MLA, Košćec Bjelajac A, Macan J, Bauer A, Apfelbacher CJ. Which outcomes should be measured in hand eczema trials? Results from patient interviews and an expert survey. J Eur Acad Dermatol Venereol. 2023;37(6):1199-206. DOI: 10.1111/jdv.18923
• dc.identifier.doi http://dx.doi.org/10.1111/jdv.18923
• dc.identifier.issn 0926-9959
• dc.identifier.uri http://hdl.handle.net/10230/57928
• dc.language.iso eng
• dc.publisher Wiley
• dc.relation.ispartof J Eur Acad Dermatol Venereol. 2023;37(6):1199-206
• dc.rights © 2023 The Authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by-nc/4.0/
• dc.title Which outcomes should be measured in hand eczema trials? Results from patient interviews and an expert survey
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion