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

Background: Targeted biologic therapies have revolutionised the treatment of severe atopic dermatitis (AD).

Objectives: To assess effects of dupilumab on patient re-engagement, quality of life (QOL), and burden of treatment (BOT) in severe AD.

Methods: Adults 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.

Results: Of 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.

Conclusions: The emergence of novel effective treatments for AD has significant implications for dermatology workforce and financial planning.