TY - JOUR
T1 - Building the foundations for an international patient-centred outcomes set for psoriasis
T2 - A scoping study
AU - Vyvey, Emma
AU - Soenen, Rani
AU - Oon, Hazel H.
AU - Mburu, Sicily
AU - Awici-Rasmussen, Maren
AU - Affandi, Azura Mohd
AU - Gulliver, Wayne
AU - Choon, Siew Eng
AU - Torres, Tiago
AU - FitzGerald, Allison
AU - Gonzalez-Cantero, Alvaro
AU - López-Ferrer, Anna
AU - Lee, Chih Hung
AU - Valenzuela, Fernando
AU - Maul, Julia Tatjana
AU - Puig, Luis
AU - Okuse, Masanori
AU - EL-Komy, Mohamed
AU - Foley, Peter
AU - Vender, Ron
AU - Boehncke, Wolf Henning
AU - Pohunek, Josef
AU - Wang, Ya Hsin
AU - Londoño-García, Angela
AU - Todd, Gail
AU - Velasquez-Lopera, Margarita
AU - Lebwohl, Mark
AU - Lau, Edmund
AU - Schmitt-Egenolf, Marcus
AU - Hilhorst, Niels
AU - Connell, Spencer
AU - Deprez, Elfie
AU - van Geel, Nanja
AU - Griffiths, Christopher
AU - Van de Kerkhof, Peter
AU - Lambert, Jo
N1 - Publisher Copyright:
© 2026 The Author(s). Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.
PY - 2026/6
Y1 - 2026/6
N2 - 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. Objective: 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. Conclusion: 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.
AB - 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. Objective: 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. Conclusion: 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.
KW - patient outcome assessment
KW - patient-centred care
KW - patient-centred outcomes set
KW - patient-relevant outcomes
KW - psoriasis
KW - value-based healthcare
UR - https://www.scopus.com/pages/publications/105029488355
U2 - 10.1111/jdv.70313
DO - 10.1111/jdv.70313
M3 - Article
AN - SCOPUS:105029488355
SN - 0926-9959
VL - 40
SP - 1005
EP - 1018
JO - Journal of the European Academy of Dermatology and Venereology
JF - Journal of the European Academy of Dermatology and Venereology
IS - 6
ER -
SDG 3 Good Health and Well-being