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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

Howells, Laura; Thomas, Kim S.; Sears, Alison V.; Nasr, Ibrahim; Wollenberg, Andreas; Schuttelaar, Marie L.A.; Romeijn, Geertruida L.E.; Paller, Amy S.; Mueller, Kelly; Doytcheva, Kristina; Kataoka, Yoko; Daguze, Justine; Barbarot, Sebastien; Von Kobyletzki, Laura Beate; Beckman, Linda; Ratib, Sonia; Cowdell, Fiona; Santer, Miriam; Chalmers, Joanne R.


Senior Research Fellow

Alison V. Sears

Ibrahim Nasr

Andreas Wollenberg

Marie L.A. Schuttelaar

Geertruida L.E. Romeijn

Amy S. Paller

Kelly Mueller

Kristina Doytcheva

Yoko Kataoka

Justine Daguze

Sebastien Barbarot

Laura Beate Von Kobyletzki

Linda Beckman

Associate Professor

Fiona Cowdell

Miriam Santer

Joanne R. Chalmers


Background: Atopic eczema (also known as eczema) is a chronic, inflammatory skin condition that often afflicts patients’ health and wellbeing. 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, USA, 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.


Howells, L., Thomas, K. S., Sears, A. V., Nasr, I., Wollenberg, A., Schuttelaar, M. L., …Chalmers, J. R. (2019). Defining and measuring " eczema control " : an international qualitative study to explore the views of those living with and treating atopic eczema. Journal of the European Academy of Dermatology and Venereology, 33(6), 1124-1132.

Journal Article Type Article
Acceptance Date Dec 19, 2018
Online Publication Date Feb 5, 2019
Publication Date 2019-06
Deposit Date Feb 5, 2019
Publicly Available Date Feb 6, 2020
Journal Journal of the European Academy of Dermatology and Venereology
Print ISSN 0926-9959
Electronic ISSN 1468-3083
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 33
Issue 6
Pages 1124-1132
Keywords Infectious Diseases; Dermatology
Public URL
Publisher URL


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