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. 2023 Apr 6:103:adv7312.
doi: 10.2340/actadv.v103.7312.

Establishment and Utility of SwedAD: A Nationwide Swedish Registry for Patients with Atopic Dermatitis Receiving Systemic Pharmacotherapy

Mikael Alsterholm  1 , Axel Svedbom  2 , Chris D Anderson  3 , Lena Holm Sommar  4 , Lina U Ivert  2 , Anna Josefson  5 , Laura Von Kobyletzki  5 , Magnus Lindberg  5 , Lena Lundeberg  2 , Maria Lundqvist  2 , Elisabet Nylander  6 , MariHelen Sandström Falk  7 , Alexander Shayesteh  6 , Gunnthorunn Sigurdardottir  3 , Andreas Sonesson  8 , Åke Svensson  9 , Marie Virtanen  10 , Sophie Vrang  11 , Carl-Fredrik Wahlgren  2 , Maria Bradley  2 , Emma K Johansson  2
Affiliations

Establishment and Utility of SwedAD: A Nationwide Swedish Registry for Patients with Atopic Dermatitis Receiving Systemic Pharmacotherapy

Mikael Alsterholm et al. Acta Derm Venereol. .

Abstract

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.

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Conflict of interest statement

MA has received speaker honoraria and/or been in advisory boards for AbbVie, Eli-Lilly, LEO Pharma, Pfizer, and Sanofi-Genzyme, and is/has been an investigator for AbbVie, and Sanofi-Genzyme. AS has received speaker honoraria from Janssen and been a consultant for AbbVie, Eli Lilly, ICON plc, and Novartis. LHS has received speaker honoraria and/or been in advisory boards for Abbvie, Eli-Lilly, LeoPharma, Pfizer, and Sanofi-Genzyme. LUI has received speaker honoraria and/or been a consultant for AbbVie, ACO, LEO Pharma, Novartis, and Sanofi-Genzyme. AJ has received speaker honoraria and/or been in advisory boards for AbbVie, ACO, Eli-Lilly, and Sanofi-Genzyme. LvK has been a speaker, advisory board member, and/or investigator for Eli Lilly, Leo Pharma, Pfizer, and Sanofi-Genzyme. ML has received speaker honoraria from AbbVie and Sanofi-Genzyme. MHSF has received speaker honoraria and/or been in advisory boards for Almirall, Astellas, AstraZeneca, AbbVie, Celgene, Galderma, LEO Pharma, Lilly, MEDA, Novartis, Sanofi-Genzyme, and Wyeth. GS has received speaker honoraria from AbbVie. ASn has received speaker honoraria and consulting fees from AbbVie, LEO Pharma, Pfizer, and Sanofi. Payments were made to ASn’s institution. ASn has been an investigator for AbbVie. SV has received speaker honoraria and been a consultant for Sanofi Genzyme and has received speaker honoraria which were paid to Atopikerna from LEO Pharma and Sanofi-Genzyme. C-FW has participated in expert meetings with AbbVie and Sanofi-Genzyme without receiving personal financial compensation. MB has received speaker honoraria and/or been in advisory boards for AbbVie, ACO, LEO Pharma, Pfizer, Novartis, and Sanofi-Genzyme, and is an investigator for AbbVie. EKJ has received speaker honoraria and/or been a consultant for AbbVie, ACO, Galenica, LEO Pharma, Novartis, and Sanofi-Genzyme.

Figures

Fig. 1
Fig. 1
Progression of enrolment in SwedAD from 1 September 2019 to 5 November 2022. At the launch of SwedAD, 100 patients from the local registry at Karolinska University Hospital were already enrolled.
Fig. 2
Fig. 2
Geographical distribution of enrolment in SwedAD. Number of patients enrolled in SwedAD per 100,000 inhabitants for each county in Sweden on 5 November 2022. 1: Norrbotten County; 2: Västerbotten County; 3: Jämtland County; 4: Västernorrland County; 5: Dalarna County; 6: Gävleborg County; 7: Värmland County; 8: Örebro County; 9: Västmanland County; 10: Uppsala County; 11: Stockholm County; 12: Västra Götaland County; 13: Östergötland County; 14: Södermanland County; 15: Halland County; 16: Jönköping County; 17: Kalmar County; 18: Skåne County; 19: Kronoberg County; 20: Blekinge County; 21: Gotland County.
Fig. 3
Fig. 3
Effect of systemic pharmacotherapy for atopic dermatitis (AD) on Eczema Area and Severity Index (EASI) and patient-reported outcome measures in SwedAD for all enrolled patients. All scores are presented at treatment start (within 30 days of start), at 120 days (± 30 days), and at 1, 2, 3, and 4 years (± 0.5 years each). Circle indicates the median for all observations in the relevant time period and the upper and lower bounds of the bar represent the interquartile range. (A) EASI. (B) Patient-Oriented Eczema Measure (POEM). (C) Dermatology Life Quality Index (DLQI). (D) Peak Itch Numerical Rating Scale-11 (NRS-11). Since a visual analogue scale was used for itch assessment prior to September 2019, such ratings are not included in the figure.
Fig. 4
Fig. 4
Drug survival for systemic pharmacotherapy in SwedAD. Drug survival was estimated using Kaplan–Meier methodology. The displayed data includes all initiated treatment episodes for atopic dermatitis after enrolment. Enrolled patients can have 1 or more treatment episodes. The graph depicts the proportion of on-going treatment episodes at a given time-point after treatment start.
See this image and copyright information in PMC

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