Abstract

Abstract Atopic dermatitis (AD) has a devastating impact on quality of life, and persistent AD affects at least 7% of adults. Until recently, options for severe AD beyond topical therapies were limited to phototherapy and conventional immunosuppressive systemic drugs. With the advent of highly effective targeted treatments such as dupilumab and Janus kinase inhibitors (JAKi), patients with AD who had been lost to follow-up in dermatology are now returning en masse for consideration of biologic treatment or JAKi. The aim of this study was to analyse qualitatively the recapture of adults with severe AD who had previously been lost to follow-up because of disillusionment with suboptimal therapies and care. Semi-structured interviews were performed with 12 adults with severe AD to discuss their pathway to return to dermatology. Thematic analysis divided concepts into two categories: experiences of losing contact with dermatology and experiences of re-engagement with dermatology. Themes related to leaving dermatology care included the ineffectiveness of older treatments, toxicity of older treatments, attendance futility, dermatologist fatigue and ‘fizzling out’. ‘The ciclosporin would work for a few weeks but then I would have a flare, and my kidneys nearly gave out’; ‘I could tell the dermatologist was sick of looking at me. Back then I thought I was the problem, but now I think he was embarrassed because he couldn’t help me’; ‘I never decided I was going to stop going, it just ended up fizzling out and never going back.’ Themes related to re-engaging with dermatology care included social media influence, novelty, exasperation with quality of life and the life-changing improvements seen with novel treatments. ‘I saw someone on Facebook showing pictures after a few weeks on the injection and I went straight to my GP for a referral back to the dermatologist’; ‘After 60 years with eczema I just wanted to try something new, even if it killed me!’; ‘A few days after starting the tablets I left like Lazarus, it was like standing up out of a wheelchair for the first time in my life.’ This study highlights the reasons why adults with AD left dermatology services, explains why they re-engaged and deeply explores the transformative effect that novel treatments have had on the AD landscape. As adults with AD continue to return to dermatology care, the implications of increasing patient numbers needing biologic and JAKi therapy should be factored into healthcare and finance planning.

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