Navigating primary care with Topical Corticosteroid Withdrawal (TSW)

Topical corticosteroids are a topical treatment that have been the cornerstone of eczema treatment for approximately 60 years. They are generally considered safe based on the information available, although research evidence on long-term safety remains low in quality and is limited. 

Topical corticosteroid withdrawal (TSW), sometimes called ‘steroid addiction’, is recognised as a distinct withdrawal reaction if TCS are stopped after prolonged and very often or continual use. Redness and burning worse than the original condition are considered as typical symptoms. However, the quality of evidence available on TSW is low, and there is some uncertainty about its nature and form – is it a single condition with a single cause, or a number of conditions with similar clinical manifestations?

An absence of shared understanding about TSW make clinical consultation difficult and is a barrier to help seeking from people living with the symptoms of TSW. Concerns about TSW may lead some to cease their eczema treatment without consulting their doctor. Better understanding is necessary in all areas – epidemiology, clinical consequence and lived experience.

We conducted a stakeholder engagement session with members of the public who self-identify as having TSW. Areas of research that were of particular interest to this group include taking steps to improve diagnosis, understanding healthcare professional attitudes towards TSW and understanding the lived experience of TSW. We believe that a qualitative study focussed on experiences within primary care could be a productive starting point for each of these areas.

This study aims to better understand the lived experience of TSW and to identify ways to support it within primary care.

We have a three-stage study design. Stage 1 will focus on building a network of collaborators, including patients, patient groups, healthcare professionals and researchers. This steering group will input into research design, analysis, and interpretation throughout the study. Stage 2 will involve interviews with approximately 20 individuals with self-identified TSW. Stage 3 will involve interviews with healthcare professionals who see people self-identifying with TSW.

Interviews will be transcribed verbatim and analysed using inductive thematic analysis. In this we will build models which describe both the perspective and understanding of healthcare professionals and members of the public. Comparison of these models will identify areas where shared understanding is lacking, and which may be a barrier to effective healthcare engagement. The multidisciplinary steering group will be involved in analysis and the development of resources which will support clinical consultations about TSW.

We will publish our work in an academic journal and share the study findings on websites and social media through the Centre of Evidence Based Dermatology, Scratch That (patient partners), and National Eczema Society (eczema charity) channels.

Amount awarded: £39,483