Building the foundations for an international patient‐centred outcomes set for psoriasis: A scoping study
Year: 2026
Type: article
Abstract: BACKGROUND: Value-based healthcare emphasizes outcomes that matter to patients, and patient-centred outcomes sets are vital to its success. For psoriasis, initial work proposed a patient-centred outcomes set in Belgium, but it requires further validation to ensure international applicability. OBJECTIVES: This scoping study aimed to refine the outcomes set in collaboration with patient representatives and dermatologists, in preparation for international validation through a Delphi consensus process. METHODS: An international Working Group of patient representatives and dermatologists was established through the International Federation for Psoriasis Associations (IFPA) and the International Psoriasis Council (IPC). Experts participated in three discussion meetings and subsequent surveys to discuss and recommend outcomes important to people living with psoriasis, their measurement and case-mix variables. The systematic review of patient-relevant outcomes was updated as well and outcome measurement instruments were selected corresponding to the COSMIN criteria. RESULTS: The Working Group included 35 experts (12 patient representatives and 23 dermatologists) from 22 countries. A total of three discussion meetings and two subsequent surveys informed the refinement of the outcomes set. 'Acceptable costs of care for society' was excluded as an outcome, four outcomes were merged into 'psoriasis clearance' and 'social activity', and 'communication' and 'confidence in care' were reclassified as patient experiences. 'Feelings of stigmatization' and 'number of flare-ups' were added based on patient recommendations. These changes resulted in a revised set of 18 patient-relevant outcomes and 2 patient experiences. After selecting outcome measurement instruments, a heatmap was compiled to assess overlap, quality and feasibility. Finally, 50 case-mix variables were proposed based on the literature and expert opinions. CONCLUSIONS: This scoping study convened an international Working Group of patient representatives and dermatologists to establish the fundamentals for a patient-centred outcomes set. The subsequent Delphi process will finalize consensus, advancing value-based psoriasis management worldwide.
DOI: 10.1111/jdv.70313
Authors: Emma Vyvey, Rani Soenen, Hazel H. Oon, Sicily Mburu, Maren Awici‐Rasmussen, Azura Mohd Affandi, Wayne Gulliver, Siew Eng Choon, Tiago Torres, Allison FitzGerald, Alvaro Gonzalez‐Cantero, Anna López‐Ferrer, Chih‐Hung Lee, Fernando Valenzuela, Julia‐Tatjana Maul, Luis Puig, Masanori Okuse, Mohamed EL‐Komy, Peter Foley, Ron Vender, Wolf‐Henning Boehncke, Josef Pohunek, Ya Hsin Wang, Angela Londoño‐García, Gail Todd, Margarita Velasquez‐Lopera, Mark Lebwohl, Edmund Lau, Marcus Schmitt‐Egenolf, Niels Hilhorst, Spencer Connell, Elfie Deprez, Nanja van Geel, Christopher Griffiths, Peter Van de Kerkhof, Jo Lambert
Institutions: Ghent University Hospital, Ghent University, National Skin Centre, National University of Singapore, Hospital Kuala Lumpur, Memorial University of Newfoundland, Monash University Malaysia, Sultanah Aminah Hospital, Centro Hospitalar do Porto, Universidad Francisco de Vitoria, Hospital Universitario Ramón y Cajal, Hospital de Sant Pau, Kaohsiung Chang Gung Memorial Hospital, University of Chile, University of Zurich, University Hospital Zurich, Universitat Autònoma de Barcelona, Institut de Recerca Sant Pau, Cairo University, The University of Melbourne, Skin Health Institute, McMaster University, University Hospital of Geneva, Universidad CES, University of Cape Town, Universidad de Antioquia, Icahn School of Medicine at Mount Sinai, Umeå University, St. Antonius Ziekenhuis, University of Manchester, Radboud University Medical Center
Language: English
Subfield: Immunology
Field: Immunology and Microbiology
Domain: Life Sciences
Open Access status: hybrid
Estimated APC paid: $5,450
OpenAlex ID: W7127954316