Re‐engagement, quality of life, and burden of treatment in adults on dupilumab for severe atopic dermatitis—A mixed methods study

Abstract

AbstractBackgroundTargeted biologic therapies have revolutionised the treatment of severe atopic dermatitis (AD).ObjectivesTo assess effects of dupilumab on patient re‐engagement, quality of life (QOL), and burden of treatment (BOT) in severe AD.MethodsAdults on dupilumab for AD completed questionnaires on QOL, BOT, and provided qualitative reflections, with a subset interviewed to explore experience of leaving and re‐engaging with dermatology. Prior treatments, adverse events, and clinical severity scoring were evaluated. Statements and interviews were qualitatively reviewed.ResultsOf 41 patients; median age was 34 years, 68% were male; and 93% (n = 38) had trialled ≥1 immunomodulatory therapies before dupilumab. Median dermatology life quality index was 21 (range 9–30, SD ± 5.1) pre‐dupilumab, and 2 (range 0–11, SD ± 3.4) post‐dupilumab. Median eczema area and severity index was 31.4 (range 10–46.4, SD ± 11.8) pre‐dupilumab, and 6.4 (range 0.4–13.2, SD ± 3.6) on dupilumab. Burden of treatment scores on dupilumab were low (median 0–3/10) across all domains. Themes identified pre‐dupilumab included sleep disturbance, low self‐esteem, social isolation, disempowerment, frustration with ineffective treatments, and high financial costs. Benefits included confidence reacquisition, enhanced sleep, liberation from time‐consuming ‘messy’ topical regimes, improved relationships, and reclaimed autonomy. Side effects included red/itchy eyes (37%, n = 13) and facial dermatitis (20%, n = 7).Twelve patients had deeper interviews. Regarding disengagement with dermatology, themes included ineffectiveness and toxicity of older treatments, attendance futility, dermatologist fatigue, and ‘fizzling out’. Regarding re‐engagement with dermatology, themes included social media influence, novelty, exasperation with QOL, and life‐changing improvements seen with dupilumab.ConclusionsThe emergence of novel effective treatments for AD has significant implications for dermatology workforce and financial planning.