Objective To inform the development of a core outcome set for eczema by engaging with people with eczema and parents of children with eczema to understand their experiences and understanding of the concept ‘eczema control’.
Design 37 participants took part in a total of six semi-structured online focus groups held in a typed chatroom with 5–7 participants per group. Three groups involved adults with eczema and three groups involved parents of children with eczema. Framework analysis was used for data analysis.
Setting A community-based sample was recruited from across the UK via social media and email.
Participants 19 adults aged 17–61 years (15/19 female, 16/19 white) and 18 parents of children with eczema aged 9 months–17 years (9/18 female, 18/19 white).
Results Four main themes were identified:(1) ‘Commonalities and differences in the experiences of control’: a reduction in symptoms such as itch and sleep loss characterised eczema control, but what level was acceptable differed across participants;(2) ‘Eczema control goes beyond the skin’: psychological factors, social factors, the constant scratching and the impact on everyday activities are a variety of ways an individual can be impacted;(3) ‘Stepping up and down of treatment’: participants’ stepped-up treatment in response to loss of control, but several factors complicated this behaviour. Control needed to be maintained after stepped-up treatment ended to be acceptable; and (4) ‘How to measure control’: self-report was generally preferred to allow frequent measurements and to capture unobservable features. Although most thought their eczema needed to be measured frequently, many also felt that this was not always realistic or desirable.
Conclusions ‘Eczema control’ is a complex experience for people with eczema and parents of children with the condition. These experiences could have important implications on how long-term control should be measured in eczema clinical trials and clinical practice.
- qualitative research
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Contributors LMH, KST, JRC and SR contributed to the conception of the study. LMH, KST, JRC, SR, FC and MS contributed to the design of the work. LMH, KST, JRC, SR and FC were involved in data collection. LMH, FC and MS were primarily involved in the analysis process, while KST, JRC and SR were involved in interpretation of data. LMH drafted the work, and KST, JRC, SR, FC and MS revised it critically for important intellectual content. All authors gave approval for the final version to be published.
Funding This study was supported by funding for the PhD studentship of LMH from the British Skin Foundation (Ref: 8016).
Competing interests LMH, KST and JC are members of the Harmonising Outcome Measures in Eczema (HOME) long-term control working group.
Ethics approval This study was approved by the University of Nottingham’s Medical School Research Ethics Committee (F14062016 SoM ROD).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Data sharing requests can be made to the corresponding author.
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