Elevating the Standard of Care for Patients with Psoriasis: 'Calls to Action' from Epicensus, a Multistakeholder Pan-European Initiative
Por:
Koren J., Lambert, JLW, Thomsen S.F., McAteer H., Fabbrocini G., Corazza V., Jullien D., Augustin M., Warren R.B., de Rie M.A., Lazaridou E., Puig L., Guillevin L., Grosser M., Boehncke, WH
Publicada:
1 ene 2023
Ahead of Print:
1 dic 2022
Resumen:
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.
Filiaciones:
Koren J.:
EUROPSO, Polzela, Slovenia
Lambert, JLW:
Univ Ghent, Dept Dermatol, Vijverpark Ingang 52-UZ Gent,Pintelaan 185, B-9000 Ghent, Belgium
Thomsen S.F.:
Univ Copenhagen, Bispebjerg Hosp, Dept Dermatol, Dept Biomed Sci, Copenhagen, Denmark
McAteer H.:
Psoriasis Assoc, Northampton, England
Fabbrocini G.:
Univ Naples Feder II, Dept Clin Med & Surg, Sect Dermatol, Naples, Italy
Corazza V.:
Italian Psoriat Assoc Friends Corazza Fdn APIAFCO, Bologna, Italy
Jullien D.:
Hop Edouard Herriot, Hosp Civils Lyon, Dept Dermatol, F-69003 Lyon, France
Lyon 1 Univ, INSERM U1111, CIRI, F-69007 Lyon, France
Augustin M.:
Univ Med Ctr Hamburg Eppendorf, Hlth Care Res Dermatol & Nursing, Hamburg, Germany
Warren R.B.:
Univ Manchester, Salford Royal NHS Fdn Trust, Dermatol Ctr, Manchester NIHR Biomed Res Ctr, Manchester, England
de Rie M.A.:
Univ Amsterdam, Dept Dermatol, Amsterdam UMC, Amsterdam, Netherlands
Lazaridou E.:
Aristotle Univ Sch Med, Dept Dermatol Venereol 2, Thessaloniki, Greece
Puig L.:
Univ Autonoma Barcelona, Hosp Santa Creu & Santa Pau, Dept Dermatol, Barcelona, Spain
Guillevin L.:
Univ Paris 05, Hop Cochin, Assistance Publ Hop Paris, Paris, France
Grosser M.:
German Psoriasis Assoc, Seewartenstr 10, D-20459 Hamburg, Germany
Boehncke, WH:
Geneva Univ Hosp, Div Dermatol & Venereol, Geneva, Switzerland
Univ Geneva, Fac Med, Dept Pathol & Immunol, Geneva, Switzerland
Green Accepted, gold, All Open Access, Gold, Green
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