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Topical steroid withdrawal (TSW) is described as an adverse reaction to topical glucocorticoids (TGCs). A pathophysiological mechanism has not been identified. There are no diagnostic criteria. The aim was to describe patient-reported characteristics of TSW in atopic dermatitis (AD). An observational cross-sectional study was performed by posting a questionnaire for participants, aged ≥18 years, reporting both AD and TSW, in a Swedish TSW-themed Facebook group during 4 weeks in 2023. The questionnaire was accessed by 98 participants, with 82 completing it. Most were female (95%), 18-39 years old (74%), self-diagnosed with TSW (84%), and reported current symptoms of AD and TSW. They defined TSW as dependency on TGCs and adverse reactions to their use. Erythema, desquamation, dryness, and oozing affecting the face, neck, and upper extremities were the most reported signs. Pruritus, sleep disturbance, and signs of anxiety and depression were the most reported symptoms. Recurring episodes of manifestations attributed to TSW were reported by 60%. The personal trigger factor was believed to be TGCs by 93%, and 33% also identified oral glucocorticoids. TGCs were currently used by 21%. Self-reported manifestations of TSW are similar to those of AD but appeared to be distinguishable for the participants and caused considerable morbidity.

A Swedish translation of the patient-reported outcome measure for assessing long-term control of atopic dermatitis, Recap of atopic eczema (RECAP), has not been validated. Cross-cultural translation and multi-centre validation of the translated RECAP questionnaire were therefore performed. Disease severity was assessed using the validated Investigator Global Assessment Scale for atopic dermatitis (vIGA-ADTM). The Swedish RECAP was completed by 208 individuals aged 16 years or older with a median age of 36 years (interquartile range [IQR] 27-48). The participants considered the questionnaire suitable for assessing eczema control. The median RECAP score (range 0-28) was 12 (IQR 5-19). The mean and median vIGA-ADTM scores (range 0-4) were 2 (standard deviation [SD] 2) and 3 (IQR 2-4), respectively. A correlation between RECAP and the vIGA-ADTM was observed (p < 0.001). There was no significant change in scores for participants who answered the questionnaire twice within 14 days. Over time, improved or worsened eczema, as evaluat-ed by vIGA-ADTM, affected RECAP scores significantly (p < 0.001). The study suggests that RECAP can assess AD control in a Swedish clinical setting and shows -acceptable reliability.

SwedAD, a Swedish nationwide registry for patients with atopic dermatitis receiving systemic pharmacotherapy, was launched on 1 September 2019. We describe here the establishment of a user-friendly registry to the benefit of patients with atopic dermatitis. By 5 November 2022, 38 clinics had recorded 931 treatment episodes in 850 patients with an approximate national coverage rate of 40%. Characteristics at enrolment included median Eczema Area and Severity Index (EASI) 10.2 (interquartile range 4.0, 19.4), Patient-Oriented Eczema Measure (POEM) 18.0 (10.0, 24.0), Dermatology Life Quality Index (DLQI) 11.0 (5.0, 19.0) and Peak Itch Numerical Rating Scale-11 (NRS-11) 6.0 (3.0, 8.0). At 3 months, median EASI was 3.2 (1.0, 7.3) and POEM, DLQI, and NRS-11 were improved. Regional coverage varied, reflecting the distribution of dermatologists, the ratio of public to private healthcare, and difficulties in recruiting certain clinics. This study highlights the importance of a nationwide registry when managing systemic pharmacotherapy of atopic dermatitis.