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

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,...

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Autores principales: Koren, Jan, Lambert, Jo L. W., Thomsen, Simon F., McAteer, Helen, Fabbrocini, Gabriella, Corazza, Valeria, Jullien, Denis, Augustin, Matthias, Warren, Richard B., de Rie, Menno A., Lazaridou, Elizabeth, Puig, Lluís, Guillevin, Loïc, Grosser, Marius, Boehncke, Wolf-Henning
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9734585/
https://www.ncbi.nlm.nih.gov/pubmed/36484915
http://dx.doi.org/10.1007/s13555-022-00846-3
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author Koren, Jan
Lambert, Jo L. W.
Thomsen, Simon F.
McAteer, Helen
Fabbrocini, Gabriella
Corazza, Valeria
Jullien, Denis
Augustin, Matthias
Warren, Richard B.
de Rie, Menno A.
Lazaridou, Elizabeth
Puig, Lluís
Guillevin, Loïc
Grosser, Marius
Boehncke, Wolf-Henning
author_facet Koren, Jan
Lambert, Jo L. W.
Thomsen, Simon F.
McAteer, Helen
Fabbrocini, Gabriella
Corazza, Valeria
Jullien, Denis
Augustin, Matthias
Warren, Richard B.
de Rie, Menno A.
Lazaridou, Elizabeth
Puig, Lluís
Guillevin, Loïc
Grosser, Marius
Boehncke, Wolf-Henning
author_sort Koren, Jan
collection PubMed
description 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s13555-022-00846-3.
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spelling pubmed-97345852022-12-12 Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative Koren, Jan Lambert, Jo L. W. Thomsen, Simon F. McAteer, Helen Fabbrocini, Gabriella Corazza, Valeria Jullien, Denis Augustin, Matthias Warren, Richard B. de Rie, Menno A. Lazaridou, Elizabeth Puig, Lluís Guillevin, Loïc Grosser, Marius Boehncke, Wolf-Henning Dermatol Ther (Heidelb) Original Research 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s13555-022-00846-3. Springer Healthcare 2022-12-09 /pmc/articles/PMC9734585/ /pubmed/36484915 http://dx.doi.org/10.1007/s13555-022-00846-3 Text en © The Author(s) 2022, corrected publication 2023 https://creativecommons.org/licenses/by-nc/4.0/Open AccessThis article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Koren, Jan
Lambert, Jo L. W.
Thomsen, Simon F.
McAteer, Helen
Fabbrocini, Gabriella
Corazza, Valeria
Jullien, Denis
Augustin, Matthias
Warren, Richard B.
de Rie, Menno A.
Lazaridou, Elizabeth
Puig, Lluís
Guillevin, Loïc
Grosser, Marius
Boehncke, Wolf-Henning
Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
title Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
title_full Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
title_fullStr Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
title_full_unstemmed Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
title_short Elevating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
title_sort elevating the standard of care for patients with psoriasis: ‘calls to action’ from epicensus, a multistakeholder pan-european initiative
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9734585/
https://www.ncbi.nlm.nih.gov/pubmed/36484915
http://dx.doi.org/10.1007/s13555-022-00846-3
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