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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

Defining and measuring ‘eczema control’: an international qualitative study to explore the views of those living with and treating atopic eczema
Defining and measuring ‘eczema control’: an international qualitative study to explore the views of those living with and treating atopic eczema

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.

0926-9959
1124-1132
Howells, L.
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Thomas, K.S.
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Sears, A.V.
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Nasr, I.
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Wollenberg, A.
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Schuttelaar, M.L.A.
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Romeijn, G.L.E.
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Paller, A.S.
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Mueller, K.
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Doytcheva, K.
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Kataoka, Y.
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Daguze, J.
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Barbarot, S.
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von Kobyletzki, L.B.
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Beckman, L.
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Ratib, S.
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Cowdell, F.
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Santer, M.
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Chalmers, J.R.
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on behalf of the long-term control of eczema working group for the HOME initiative
Howells, L.
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Thomas, K.S.
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Sears, A.V.
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Nasr, I.
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Wollenberg, A.
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Schuttelaar, M.L.A.
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Romeijn, G.L.E.
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Paller, A.S.
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Mueller, K.
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Doytcheva, K.
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Kataoka, Y.
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Daguze, J.
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Barbarot, S.
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von Kobyletzki, L.B.
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Beckman, L.
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Ratib, S.
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Cowdell, F.
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Santer, M.
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Chalmers, J.R.
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Howells, L., Thomas, K.S., Sears, A.V., Nasr, I., Wollenberg, A., Schuttelaar, M.L.A., Romeijn, G.L.E., Paller, A.S., Mueller, K., Doytcheva, K., Kataoka, Y., Daguze, J., Barbarot, S., von Kobyletzki, L.B., Beckman, L., Ratib, S., Cowdell, F., Santer, M. and Chalmers, J.R. , on behalf of the long-term control of eczema working group for the HOME initiative (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. (doi:10.1111/jdv.15475).

Record type: Article

Abstract

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.

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Howells et al 2019 Journal of the European Academy of Dermatology and Venereology - Version of Record
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Accepted/In Press date: 19 December 2018
e-pub ahead of print date: 5 February 2019
Published date: 1 June 2019

Identifiers

Local EPrints ID: 431690
URI: http://eprints.soton.ac.uk/id/eprint/431690
ISSN: 0926-9959
PURE UUID: 069b8e66-0f71-480c-8f9a-2a37ee5fffdd
ORCID for M. Santer: ORCID iD orcid.org/0000-0001-7264-5260

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Date deposited: 13 Jun 2019 16:30
Last modified: 18 Feb 2021 17:13

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Contributors

Author: L. Howells
Author: K.S. Thomas
Author: A.V. Sears
Author: I. Nasr
Author: A. Wollenberg
Author: M.L.A. Schuttelaar
Author: G.L.E. Romeijn
Author: A.S. Paller
Author: K. Mueller
Author: K. Doytcheva
Author: Y. Kataoka
Author: J. Daguze
Author: S. Barbarot
Author: L.B. von Kobyletzki
Author: L. Beckman
Author: S. Ratib
Author: F. Cowdell
Author: M. Santer ORCID iD
Author: J.R. Chalmers
Corporate Author: on behalf of the long-term control of eczema working group for the HOME initiative

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