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

Research output: Contribution to journalResearch articleContributedpeer-review


  • Henriette Rönsch - , Department of Dermatology (Author)
  • Frederike Schiffers - , Department of Dermatology (Author)
  • Robert Ofenloch - , Heidelberg University  (Author)
  • Elke Weisshaar - , Heidelberg University  (Author)
  • Anna-Sophie Buse - , University Osnabruck (Author)
  • Andreas Hansen - , University Osnabruck (Author)
  • Swen Malte John - , University Osnabruck (Author)
  • Ana M Giménez Arnau - , Municipal Institute for Medical Research Hospital del Mar (Author)
  • David Pesqué - , Municipal Institute for Medical Research Hospital del Mar (Author)
  • Tove Agner - , Bispebjerg University Hospital (Author)
  • Line Brok Nørreslet - , Bispebjerg University Hospital (Author)
  • Laura Loman - , University of Groningen (Author)
  • Geertruida L E Romeijn - , University of Groningen (Author)
  • Marie L A Schuttelaar - , University of Groningen (Author)
  • Adrijana Košćec Bjelajac - , Institute for Medical Research and Occupational Health (Author)
  • Jelena Macan - , Institute for Medical Research and Occupational Health (Author)
  • Andrea Bauer - , Department of Dermatology (Author)
  • Christian J Apfelbacher - , Otto von Guericke University Magdeburg (Author)


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.


Original languageEnglish
Pages (from-to)1199-1206
Number of pages8
JournalJournal of the European Academy of Dermatology and Venereology
Issue number6
Publication statusPublished - Jun 2023

External IDs

Scopus 85148342206
ORCID /0000-0001-8649-9196/work/148145043
ORCID /0000-0002-4411-3088/work/148145493



  • Humans, Quality of Life, Eczema/drug therapy, Pruritus/drug therapy, Pain, Forecasting, Delphi Technique, Treatment Outcome