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

Authors

  • Mikael Alsterholm Department of Dermatology and Venereology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
  • Axel Svedbom Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Chris D. Anderson Department of Dermatology and Venereology, County Council of Östergötland, Linköping, Sweden
  • Lena Holm Sommar Stockholm Hud, Stockholm, Sweden
  • Lina U. Ivert Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Anna Josefson School of Medical Sciences, Faculty of Medicine and Health, Örebro University, Örebro, Sweden
  • Laura von Kobyletzki School of Medical Sciences, Faculty of Medicine and Health, Örebro University, Örebro, Sweden
  • Magnus Lindberg School of Medical Sciences, Faculty of Medicine and Health, Örebro University, Örebro, Sweden
  • Lena Lundeberg Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Maria Lundqvist Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Elisabet Nylander Department of Public Health and Clinical Medicine, Dermatology and Venereology, Umeå University, Umeå, Sweden
  • MariHelen Sandström Falk Capio Skin, Carlanderska Hospital, Gothenburg, Sweden
  • Alexander Shayesteh Department of Public Health and Clinical Medicine, Dermatology and Venereology, Umeå University, Umeå, Sweden
  • Gunnthorunn Sigurdardottir Department of Dermatology and Venereology, County Council of Östergötland, Linköping, Sweden
  • Andreas Sonesson Department of Dermatology and Venereology, Skåne University Hospital, Lund, Sweden
  • Åke Svensson Department of Occupational and Environmental Dermatology, Lund University, Skåne University Hospital, Malmö, Sweden
  • Marie Virtanen Department of Medical Sciences, Section of Dermatology, Uppsala University, Uppsala, Sweden
  • Sophie Vrang Patients’ organization Atopikerna, The Swedish Asthma and Allergy Association, Stockholm, Sweden
  • Carl-Fredrik Wahlgren Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Maria Bradley Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
  • Emma K. Johansson Dermatology and Venereology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden

DOI:

https://doi.org/10.2340/actadv.v103.7312

Keywords:

Dupilumab, Janus Kinase Inhibitors, Methotrexate, Real-world data, Registries

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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References

Weidinger S, Beck LA, Bieber T, Kabashima K, Irvine AD. Atopic dermatitis. Nat Rev Dis Primers 2018; 4: 1.

https://doi.org/10.1038/s41572-018-0001-z DOI: https://doi.org/10.1038/s41572-018-0001-z

Weidinger S, Novak N. Atopic dermatitis. Lancet 2016; 387: 1109-1122.

https://doi.org/10.1016/S0140-6736(15)00149-X DOI: https://doi.org/10.1016/S0140-6736(15)00149-X

Flohr C, Irvine AD. Systemic therapies for severe atopic dermatitis in children and adults. J Allergy Clin Immunol 2013; 132: 774-774.e6.

https://doi.org/10.1016/j.jaci.2013.03.016 DOI: https://doi.org/10.1016/j.jaci.2013.03.016

McAleer MA, Flohr C, Irvine AD. Management of difficult and severe eczema in childhood. BMJ 2012; 345: e4770.

https://doi.org/10.1136/bmj.e4770 DOI: https://doi.org/10.1136/bmj.e4770

Schmitt J, Spuls PI, Thomas KS, Simpson E, Furue M, Deckert S, et al. The Harmonising Outcome Measures for Eczema (HOME) statement to assess clinical signs of atopic eczema in trials. J Allergy Clin Immunol 2014; 134: 800-807.

https://doi.org/10.1016/j.jaci.2014.07.043 DOI: https://doi.org/10.1016/j.jaci.2014.07.043

Vincent R, Chalmers JR, McWilliams C, Thomas KS, Dodd S, Rogers N, et al. Assessing uptake of the Harmonising Outcome Measures for Eczema (HOME) core outcome set and recommended instruments. Br J Dermatol 2020; 183: 566-568.

https://doi.org/10.1111/bjd.19030 DOI: https://doi.org/10.1111/bjd.19030

Williams HC, Schmitt J, Thomas KS, Spuls PI, Simpson EL, Apfelbacher CJ, et al. The HOME core outcome set for clinical trials of atopic dermatitis. J Allergy Clin Immunol 2022; 149: 1899-1911.

https://doi.org/10.1016/j.jaci.2022.03.017 DOI: https://doi.org/10.1016/j.jaci.2022.03.017

Gerbens LAA, Apfelbacher CJ, Irvine AD, Barbarot S, de Booij RJ, Boyce AE, et al. TREatment of ATopic eczema (TREAT) Registry Taskforce: an international Delphi exercise to identify a core set of domains and domain items for national atopic eczema photo- and systemic therapy registries. Br J Dermatol 2019; 180: 790-801.

https://doi.org/10.1111/bjd.16714 DOI: https://doi.org/10.1111/bjd.16714

Vermeulen FM, Gerbens LAA, Bosma AL, Apfelbacher CJ, Irvine AD, Arents BWM, et al. TREatment of ATopic eczema (TREAT) Registry Taskforce: consensus on how and when to measure the core dataset for atopic eczema treatment research registries. Br J Dermatol 2019; 181: 492-504.

https://doi.org/10.1111/bjd.17715 DOI: https://doi.org/10.1111/bjd.17715

Bosma AL, de Wijs LEM, Hof MH, van Nieuwenhuizen BR, Gerbens LAA, Middelkamp-Hup MA, et al. Long-term effectiveness and safety of treatment with dupilumab in patients with atopic dermatitis: results of the TREAT NL (TREatment of ATopic eczema, the Netherlands) registry. J Am Acad Dermatol 2020; 83: 1375-1384.

https://doi.org/10.1016/j.jaad.2020.05.128 DOI: https://doi.org/10.1016/j.jaad.2020.05.128

Ivert LU, Wahlgren CF, Ivert L, Lundqvist M, Bradley M. Eye complications during dupilumab treatment for severe atopic dermatitis. Acta Derm Venereol 2019; 99: 375-378.

https://doi.org/10.2340/00015555-3121 DOI: https://doi.org/10.2340/00015555-3121

Chalmers JR, Thomas KS, Apfelbacher C, Williams HC, Prinsen CA, Spuls PI, et al. Report from the fifth international consensus meeting to harmonize core outcome measures for atopic eczema/dermatitis clinical trials (HOME initiative). Br J Dermatol 2018; 178: e332-e341.

Larsen HH, Vittrup I, Ruge IF, Elberling J, Skov L, Ibler K, et al. Severe and ChRonic Atopic dermatitis Treatment CoHort (SCRATCH): a Danish real-world evidence atopic dermatitis treatment registry. Acta Derm Venereol 2022; 102: adv00760.

https://doi.org/10.2340/actadv.v102.915 DOI: https://doi.org/10.2340/actadv.v102.915

Hanifin JM, Thurston M, Omoto M, Cherill R, Tofte SJ, Graeber M. The eczema area and severity index (EASI): assessment of reliability in atopic dermatitis. EASI Evaluator Group. Exp Dermatol 2001; 10: 11-18.

https://doi.org/10.1034/j.1600-0625.2001.100102.x DOI: https://doi.org/10.1034/j.1600-0625.2001.100102.x

Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI) - a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19: 210-216.

https://doi.org/10.1111/j.1365-2230.1994.tb01167.x DOI: https://doi.org/10.1111/j.1365-2230.1994.tb01167.x

Montgomery SA, Asberg M. A new depression scale designed to be sensitive to change. Br J Psychiatry 1979; 134: 382-389.

https://doi.org/10.1192/bjp.134.4.382 DOI: https://doi.org/10.1192/bjp.134.4.382

Spuls PI, Gerbens LAA, Simpson E, Apfelbacher CJ, Chalmers JR, Thomas KS, et al. Patient-Oriented Eczema Measure (POEM), a core instrument to measure symptoms in clinical trials: a Harmonising Outcome Measures for Eczema (HOME) statement. Br J Dermatol 2017; 176: 979-984.

https://doi.org/10.1111/bjd.15179 DOI: https://doi.org/10.1111/bjd.15179

Yosipovitch G, Reaney M, Mastey V, Eckert L, Abbe A, Nelson L, et al. Peak pruritus numerical rating scale: psychometric validation and responder definition for assessing itch in moderate-to-severe atopic dermatitis. Br J Dermatol 2019; 181: 761-769.

https://doi.org/10.1111/bjd.17744 DOI: https://doi.org/10.1111/bjd.17744

Charman CR, Venn AJ, Williams HC. The patient-oriented eczema measure: development and initial validation of a new tool for measuring atopic eczema severity from the patients' perspective. Arch Dermatol 2004; 140: 1513-1519.

https://doi.org/10.1001/archderm.140.12.1513 DOI: https://doi.org/10.1001/archderm.140.12.1513

Lewis-Jones MS, Finlay AY. The Children's Dermatology Life Quality Index (CDLQI): initial validation and practical use. Br J Dermatol 1995; 132: 942-949.

https://doi.org/10.1111/j.1365-2133.1995.tb16953.x DOI: https://doi.org/10.1111/j.1365-2133.1995.tb16953.x

Williams HC, Burney PG, Hay RJ, Archer CB, Shipley MJ, Hunter JJ, et al. The U.K. Working Party's diagnostic criteria for atopic dermatitis. I. Derivation of a minimum set of discriminators for atopic dermatitis. Br J Dermatol 1994; 131: 383-396.

https://doi.org/10.1111/j.1365-2133.1994.tb08530.x DOI: https://doi.org/10.1111/j.1365-2133.1994.tb08530.x

Ludvigsson JF, Almqvist C, Bonamy AK, Ljung R, Michaelsson K, Neovius M, et al. Registers of the Swedish total population and their use in medical research. Eur J Epidemiol 2016; 31: 125-136.

https://doi.org/10.1007/s10654-016-0117-y DOI: https://doi.org/10.1007/s10654-016-0117-y

Abdat R, Waldman RA, de Bedout V, Czernik A, McLeod M, King B, et al. Dupilumab as a novel therapy for bullous pemphigoid: a multicenter case series. J Am Acad Dermatol 2020; 83: 46-52.

https://doi.org/10.1016/j.jaad.2020.01.089 DOI: https://doi.org/10.1016/j.jaad.2020.01.089

Husein-ElAhmed H, Steinhoff M. Dupilumab in prurigo nodularis: a systematic review of current evidence and analysis of predictive factors to response. J Dermatolog Treat 2022; 33: 1547-1553.

https://doi.org/10.1080/09546634.2020.1853024 DOI: https://doi.org/10.1080/09546634.2020.1853024

Lonndahl L, Lundqvist M, Bradley M, Johansson EK. Dupilumab significantly reduces symptoms of prurigo nodularis and depression: a case series. Acta Derm Venereol 2022; 102: adv00754.

https://doi.org/10.2340/actadv.v102.2151 DOI: https://doi.org/10.2340/actadv.v102.2151

Johansson EK, Ivert LU, Bradley B, Lundqvist M, Bradley M. Weight gain in patients with severe atopic dermatitis treated with dupilumab: a cohort study. BMC Dermatol 2020; 20: 8.

https://doi.org/10.1186/s12895-020-00103-0 DOI: https://doi.org/10.1186/s12895-020-00103-0

Ivert LU, Svedbom A, Lundqvist M, Wahlgren CF, Bradley M, Johansson EK. The impact of systemic treatment of atopic dermatitis on depressive symptoms: a prospective clinical cohort study. Acta Derm Venereol 2022; 102: adv00801.

https://doi.org/10.2340/actadv.v102.803 DOI: https://doi.org/10.2340/actadv.v102.803

Bosma AL, Musters AH, Bloem M, Gerbens LAA, Middelkamp-Hup MA, Haufe E, et al. Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce. J Eur Acad Dermatol Venereol 2023; 37: 123-136.

https://doi.org/10.1111/jdv.18566 DOI: https://doi.org/10.1111/jdv.18566

Published

2023-04-06

How to Cite

Alsterholm, M., Svedbom, A. ., Anderson, C. D., Holm Sommar, L., Ivert, L. U., Josefson, A., von Kobyletzki, L., Lindberg, M., Lundeberg, L., Lundqvist, M., Nylander, E., Sandström Falk, M., Shayesteh, A., Sigurdardottir, G. ., Sonesson, A., Svensson, Åke, Virtanen, M., Vrang, S., Wahlgren, C.-F., Bradley, M., & Johansson, E. K. (2023). Establishment and Utility of SwedAD: A Nationwide Swedish Registry for Patients with Atopic Dermatitis Receiving Systemic Pharmacotherapy. Acta Dermato-Venereologica, 103, adv7312. https://doi.org/10.2340/actadv.v103.7312

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