Howells, L and Thomas, Kim. S and Sears, A and Ibrahim, N and Wollenberg, A and Schuttelaar, M and Romeijn, G and Paller, A and Mueller, K and Doytcheva, K and Kataoka, Y and Daguze, J and Barbarot, S and Beate von Kobyletzki, L and Beckman, L and Ratib, S and Cowdell, Fiona and Santer, M and Chalmers, JR
(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).
pp. 1124-1132.
ISSN 0926-9959
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Eczema JEADV manuscript pre-pub Nov 2018.pdf
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Abstract
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.
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