TY - JOUR
T1 - Elevating the Standard of Care for Patients with Psoriasis
T2 - ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative
AU - Koren, Jan
AU - Lambert, Jo L. W.
AU - Thomsen, Simon F.
AU - McAteer, Helen
AU - Fabbrocini, Gabriella
AU - Corazza, Valeria
AU - Jullien, Denis
AU - Augustin, Matthias
AU - Warren, Richard B.
AU - de Rie, Menno A.
AU - Lazaridou, Elizabeth
AU - Puig, Lluís
AU - Guillevin, Loïc
AU - Grosser, Marius
AU - Boehncke, Wolf-Henning
N1 - Funding Information:
The authors would like to thank Anusha Patel for her participation in the Delphi voting, contributions at the Consensus Council meetings and for critical review of the manuscript. They would also like to thank Marcello Pani and David Trigos for their participation in the Delphi voting and contributions at the Consensus Council meetings. In addition, the authors would like to thank the clinicians, payors and patient representatives who completed the questionnaire providing valuable insights to initiate this programme. RBW is supported by the Manchester NIHR Biomedical Research Centre. This programme, and the journal’s Rapid Service fee, was funded by UCB Pharma. Medical writing and editorial assistance were provided by Laura Harrington PhD, Ogilvy Health UK and funded by UCB Pharma. All the authors contributed to the Delphi exercise and participated in the Consensus Council meetings and the generation of Calls to Action. The first draft of the manuscript was written by Laura Harrington, PhD, under direction from the authors, and all authors critically reviewed the manuscript for important intellectual content and approved the final draft. All authors received an honorarium from UCB for participating in the Delphi surveys and the Consensus Council meetings. Jan Koren, Valeria Corazza, Menno A de Rie, and Marius Grosser have no other competing interests to declare.
Publisher Copyright:
© 2022, The Author(s).
PY - 2023/1
Y1 - 2023/1
N2 - 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.
AB - 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.
KW - Consensus
KW - Delphi
KW - Multistakeholder
KW - Psoriasis
KW - Standard of care
UR - https://www.scopus.com/pages/publications/85143591179
U2 - 10.1007/s13555-022-00846-3
DO - 10.1007/s13555-022-00846-3
M3 - Article
C2 - 36484915
SN - 2193-8210
VL - 13
SP - 245
EP - 268
JO - Dermatology and therapy
JF - Dermatology and therapy
IS - 1
ER -