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Abstract

BackgroundAtopic eczema (also known as eczema) is a chronic, inflammatory skin condition that often afflictspatients’health and well-being. The Harmonising Outcome Measures for Eczema (HOME) initiative recommends that‘long-term control of eczema’is measured in all clinical trials 3 months or longer in duration. However, little has beenpublished on what eczema control means to those living with or treating atopic eczema.ObjectivesTo (i) develop understanding of what eczema control means to patients, carers and clinicians and (ii)explore the feasibility and acceptability of different ways of measuring eczema control in the long term.MethodsOnline focus groups explored patients/carers experiences in the UK, the United States, the Nether-lands, France, Sweden and Japan, and an international online survey gathered views of clinicians. The frameworkmethod was used to analyse the focus groups, and thematic analysis was used to analyse survey data. Allfind-ings were integrated into a theoretical framework to create overarching themes that cut across these diversegroups.ResultsEight focus groups with patients (16 years+) and eight groups with carers of children took place (N=97).Sixty-two people took part in the survey. Eczema control was described as a multifaceted construct involvingchanges in disease activity, the treatment and management of the condition and psychological, social and physicalfunctioning. Patient/carer measurement allows personal accounts and frequent measurement, whilst clinician mea-surement was deemed less subjective. The burden on patients/carers and issues for analysing and interpreting datashould be considered.ConclusionsThis study formed the basis of judging the content validity and feasibility of measurement instruments/methods to assess control of eczema in clinical trials. This online approach to an international qualitative study is anexample of how core outcome set developers with limited resources can engage with multiple stakeholder groups on aninternational basis to inform consensus meeting discussions.
Original languageEnglish
Pages (from-to)1124-1132
Number of pages9
JournalJournal of The European Academy of Dermatology and Venereology
Volume33
Issue number6
Early online date5 Feb 2019
DOIs
Publication statusPublished - 1 Jun 2019

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