Skip to main content
Top
Published in: Dermatology and Therapy 1/2023

Open Access 09-12-2022 | Care | Original Research

Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative

Authors: Jan Koren, Jo L. W. Lambert, Simon F. Thomsen, Helen McAteer, Gabriella Fabbrocini, Valeria Corazza, Denis Jullien, Matthias Augustin, Richard B. Warren, Menno A. de Rie, Elizabeth Lazaridou, Lluís Puig, Loïc Guillevin, Marius Grosser, Wolf-Henning Boehncke

Published in: Dermatology and Therapy | Issue 1/2023

Login to get access

Abstract

Introduction

Despite advances in treatment options and the management of patients with psoriasis, considerable unmet needs remain. Our objective was to identify ways to elevate the standard of care for patients with psoriasis by combining the perspectives of three important stakeholders: patients, clinicians and payors, and define ‘Calls to Action’ designed to achieve the identified changes.

Methods

Eight themes relevant to elevating the standard of care were identified from an insights-gathering questionnaire completed by all three stakeholder groups. A modified Delphi exercise gained consensus on statements informed by the insights. Statements were then used to inspire ‘Calls to Action’ – practical steps that could be taken to realise the desired changes and elevate the standard of care.

Results

In total, 18 European experts (10 dermatologists, 3 payors and 5 patient representatives) took part in the Delphi process. Consensus was reached on statements relating to all eight themes: improve healthcare systems to better support multidisciplinary team working and digital services, real-world data generation and optimal use, improve patient access, elevate quality-of-life measures as the most important outcomes, involve patients in patient-centred and personalised approaches to care, improve the relevance and reach of guidelines, education, and multistakeholder engagement. ‘Calls to Action’ common to all three stakeholder groups recognised the need to capitalise on the shift to digital healthcare, the need for consistent input into registries to generate real-world evidence to support guideline development, and the necessity of educating patients on the benefits of reporting outcomes to generate real-world data. The enormous quality-of-life burden and psychological impact of psoriasis, as well as the clinical needs of patients must be better understood, including by healthcare commissioners, so that funding priorities are assessed appropriately.

Conclusion

This unique initiative identified a practical ‘Call-to-Action Framework’ which, if implemented, could help improve the standard of care for patients with psoriasis.
Video Abstract (MP4 44777 KB)
Appendix
Available only for authorised users
Literature
10.
go back to reference Boehncke WH, Horvath R, Dalkilic E, et al. Association between clinical specialty setting and disease management in patients with psoriatic arthritis: results from LOOP, a cross-sectional, multi-country, observational study. J Eur Acad Dermatol Venereol. 2020;34(2035–2043):20200306. https://doi.org/10.1111/jdv.16251.CrossRef Boehncke WH, Horvath R, Dalkilic E, et al. Association between clinical specialty setting and disease management in patients with psoriatic arthritis: results from LOOP, a cross-sectional, multi-country, observational study. J Eur Acad Dermatol Venereol. 2020;34(2035–2043):20200306. https://​doi.​org/​10.​1111/​jdv.​16251.CrossRef
12.
go back to reference Hjuler KF, Dige A, Agnholt J, et al. Effectiveness of interdisciplinary combined dermatology-gastroenterology-rheumatology clinical care compared to usual care in patients with immune-mediated inflammatory diseases: a parallel group, non-blinded, pragmatic randomised trial. BMJ Open. 2021;11(e041871):20210428. https://doi.org/10.1136/bmjopen-2020-041871.CrossRef Hjuler KF, Dige A, Agnholt J, et al. Effectiveness of interdisciplinary combined dermatology-gastroenterology-rheumatology clinical care compared to usual care in patients with immune-mediated inflammatory diseases: a parallel group, non-blinded, pragmatic randomised trial. BMJ Open. 2021;11(e041871):20210428. https://​doi.​org/​10.​1136/​bmjopen-2020-041871.CrossRef
20.
go back to reference Armstrong A, Jarvis S, Boehncke WH, et al. Patient perceptions of clear/almost clear skin in moderate-to-severe plaque psoriasis: results of the Clear About Psoriasis worldwide survey. J Eur Acad Dermatol Venereol. 2018;32(2200–2207):20180731. https://doi.org/10.1111/jdv.15065.CrossRef Armstrong A, Jarvis S, Boehncke WH, et al. Patient perceptions of clear/almost clear skin in moderate-to-severe plaque psoriasis: results of the Clear About Psoriasis worldwide survey. J Eur Acad Dermatol Venereol. 2018;32(2200–2207):20180731. https://​doi.​org/​10.​1111/​jdv.​15065.CrossRef
22.
go back to reference Richard MA, Paul C, De Pouvourville G, et al. Out-of-pocket expenditures in France to manage psoriasis in adult patients: results from an observational, cross-sectional, non-comparative, multicentre study. J Eur Acad Dermatol Venereol. 2021;35:912–8. https://doi.org/10.1111/jdv.17000 (20201208).CrossRefPubMed Richard MA, Paul C, De Pouvourville G, et al. Out-of-pocket expenditures in France to manage psoriasis in adult patients: results from an observational, cross-sectional, non-comparative, multicentre study. J Eur Acad Dermatol Venereol. 2021;35:912–8. https://​doi.​org/​10.​1111/​jdv.​17000 (20201208).CrossRefPubMed
27.
go back to reference Korman NJ, Zhao Y, Pike J, et al. Satisfaction with current psoriasis treatment: misalignment between physician and patient perceptions. Dermatol Online J. 2016;22:20160715. Korman NJ, Zhao Y, Pike J, et al. Satisfaction with current psoriasis treatment: misalignment between physician and patient perceptions. Dermatol Online J. 2016;22:20160715.
29.
go back to reference Masson Regnault M, Castaneda-Sanabria J, Diep Tran MHT, et al. Users of biologics in clinical practice: would they be eligible for phase III clinical studies? Cohort study in the French Psoriasis Registry PSOBIOTEQ. J Eur Acad Dermatol Venereol. 2020;34:293–300. https://doi.org/10.1111/jdv.15878 (20191017).CrossRefPubMed Masson Regnault M, Castaneda-Sanabria J, Diep Tran MHT, et al. Users of biologics in clinical practice: would they be eligible for phase III clinical studies? Cohort study in the French Psoriasis Registry PSOBIOTEQ. J Eur Acad Dermatol Venereol. 2020;34:293–300. https://​doi.​org/​10.​1111/​jdv.​15878 (20191017).CrossRefPubMed
35.
go back to reference Mendes-Bastos P, Nero P, Ferreira P, et al. A multidisciplinary approach in psoriatic disease: the different models of dermatology-rheumatology collaborations in Portugal. Acta Reumatol Port. 2021;46:333–41.PubMed Mendes-Bastos P, Nero P, Ferreira P, et al. A multidisciplinary approach in psoriatic disease: the different models of dermatology-rheumatology collaborations in Portugal. Acta Reumatol Port. 2021;46:333–41.PubMed
39.
go back to reference Jendoubi F, Balica S, Richard MA, et al. A multicentre randomised controlled study evaluating the effect of a standardised education programme on quality of life, disease severity, and disease knowledge in patients with moderate-to-severe psoriasis: the EDUPSO study. Dermatology. 2021. https://doi.org/10.1159/000520289 (20211209).CrossRefPubMed Jendoubi F, Balica S, Richard MA, et al. A multicentre randomised controlled study evaluating the effect of a standardised education programme on quality of life, disease severity, and disease knowledge in patients with moderate-to-severe psoriasis: the EDUPSO study. Dermatology. 2021. https://​doi.​org/​10.​1159/​000520289 (20211209).CrossRefPubMed
Metadata
Title
Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
Authors
Jan Koren
Jo L. W. Lambert
Simon F. Thomsen
Helen McAteer
Gabriella Fabbrocini
Valeria Corazza
Denis Jullien
Matthias Augustin
Richard B. Warren
Menno A. de Rie
Elizabeth Lazaridou
Lluís Puig
Loïc Guillevin
Marius Grosser
Wolf-Henning Boehncke
Publication date
09-12-2022
Publisher
Springer Healthcare
Published in
Dermatology and Therapy / Issue 1/2023
Print ISSN: 2193-8210
Electronic ISSN: 2190-9172
DOI
https://doi.org/10.1007/s13555-022-00846-3

Other articles of this Issue 1/2023

Dermatology and Therapy 1/2023 Go to the issue