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

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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, L. (author): University of Nottingham, UK

Thomas, K.S. (author): University of Nottingham, UK

Sears, A.V. (author): St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Foundation Trust, UK; King’s College London, UK

Nasr, I. (author): Gloucester, UK,No affiliation available (private)

Wollenberg, A. (author): Ludwig Maximilian University, Germany; Klinik Thalkirchner Straße, Germany,Ludwig-Maximilian University of Munich,Klinik Thalkirchner Straße, München

Schuttelaar, M.L.A. (author): University of Groningen, The Netherlands,University Medical Center Groningen

Romeijn, G.L.E. (author): University of Groningen, The Netherlands,University Medical Center Groningen

Paller, A.S. (author): Northwestern University Feinberg School of Medicine, USA

Mueller, K. (author): Northwestern University Feinberg School of Medicine, USA

Doytcheva, K. (author): Northwestern University Feinberg School of Medicine, USA

Kataoka, Y. (author): Osaka Habikino Medical Center, Japan

Daguze, J. (author): CHU Nantes, France,Nantes University Hospital

Barbarot, S. (author): CHU Nantes, Nantes, France,Nantes University Hospital

von Kobyletzki, Laura B. (author): Karlstad University,Lund University,Lunds universitet,Dermatologi,Forskargrupper vid Lunds universitet,Dermatology,Lund University Research Groups

Beckman, Linda, 1980- (author): Karlstads universitet,Institutionen för hälsovetenskaper (from 2013)

Ratib, S. (author): niversity of Nottingham, UK

Cowdell, F. (author): Birmingham City University, UK

Santer, M. (author): University of Southampton, UK

Chalmers, J.R. (author): University of Nottingham, UK

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2019-04-08
2019
English.
In: Journal of the European Academy of Dermatology and Venereology. - : John Wiley & Sons. - 0926-9959 .- 1468-3083. ; 33:6, s. 1124-1132

Related links:: https://doi.org/10.1...; show more...; https://kau.diva-por... (primary) (Raw object); https://onlinelibrar...; http://dx.doi.org/10... (free); https://urn.kb.se/re...; https://doi.org/10.1...; https://lup.lub.lu.s...; show less...

Journal article (peer-reviewed)

Abstract Subject headings

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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Dermatologi och venereologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Dermatology and Venereal Diseases (hsv//eng)

Keyword

Core outcome measures
dermatitis
consensus
trials
Public Health Science
Folkhälsovetenskap

Publication and Content Type

ref (subject category)
art (subject category)

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