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Defining and measuring 'eczema control': an international qualitative study to explore the views of those living with and treating atopic eczema
Univ Nottingham, Ctr Evidence Based Dermatol, Nottingham, England.
Lunds universitet.ORCID iD: 0000-0002-3094-9685
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences (from 2013).ORCID iD: 0000-0002-7872-5808
Number of Authors: 192019 (English)In: Journal of the European Academy of Dermatology and Venereology, ISSN 0926-9959, E-ISSN 1468-3083, Vol. 33, no 6, p. 1124-1132Article in journal (Refereed) Published
Abstract [en]

Background Atopic eczema (also known as eczema) is a chronic, inflammatory skin condition that often afflicts patients' 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 been published on what eczema control means to those living with or treating atopic eczema. Objectives To (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. Methods Online focus groups explored patients/carers experiences in the UK, the United States, the Netherlands, France, Sweden and Japan, and an international online survey gathered views of clinicians. The framework method was used to analyse the focus groups, and thematic analysis was used to analyse survey data. All findings were integrated into a theoretical framework to create overarching themes that cut across these diverse groups. Results Eight 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 involving changes in disease activity, the treatment and management of the condition and psychological, social and physical functioning. Patient/carer measurement allows personal accounts and frequent measurement, whilst clinician measurement was deemed less subjective. The burden on patients/carers and issues for analysing and interpreting data should be considered. Conclusions This 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 an example of how core outcome set developers with limited resources can engage with multiple stakeholder groups on an international basis to inform consensus meeting discussions.

Place, publisher, year, edition, pages
John Wiley & Sons, 2019. Vol. 33, no 6, p. 1124-1132
Keywords [en]
CORE OUTCOME MEASURES; DERMATITIS; CONSENSUS; TRIALS
National Category
Dermatology and Venereal Diseases
Identifiers
URN: urn:nbn:se:kau:diva-72475DOI: 10.1111/jdv.15475ISI: 000468972400017PubMedID: 30720903OAI: oai:DiVA.org:kau-72475DiVA, id: diva2:1324168
Available from: 2019-06-13 Created: 2019-06-13 Last updated: 2019-06-13Bibliographically approved

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von Kobyletzki, Laura B.Beckman, Linda

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