TY - JOUR
T1 - Defining and measuring ‘eczema control’
T2 - an international qualitative study to explore the views of those living with and treating atopic eczema
AU - the long-term control of eczema working group for the HOME initiative
AU - Howells, L.
AU - Thomas, K. S.
AU - Sears, A. V.
AU - Nasr, I.
AU - Wollenberg, A.
AU - Schuttelaar, M. L.A.
AU - Romeijn, G. L.E.
AU - Paller, A. S.
AU - Mueller, K.
AU - Doytcheva, K.
AU - Kataoka, Y.
AU - Daguze, J.
AU - Barbarot, S.
AU - von Kobyletzki, L. B.
AU - Beckman, L.
AU - Ratib, S.
AU - Cowdell, F.
AU - Santer, M.
AU - Chalmers, J. R.
N1 - Publisher Copyright:
© 2019 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.
PY - 2019/6
Y1 - 2019/6
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85066145629&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85066145629&partnerID=8YFLogxK
U2 - 10.1111/jdv.15475
DO - 10.1111/jdv.15475
M3 - Article
C2 - 30720903
AN - SCOPUS:85066145629
SN - 0926-9959
VL - 33
SP - 1124
EP - 1132
JO - Journal of the European Academy of Dermatology and Venereology
JF - Journal of the European Academy of Dermatology and Venereology
IS - 6
ER -