Psoriasis and Eczema Association of Norway, Psoriasis and Eczema Association, Oslo, Norway.
Dermatology, Hospital Kuala Lumpur, Kuala Lumpur, Malaysia.
Dermatology, Memorial University of Newfoundland, CA, St. John's, United States.
Dermatology, Hospital Sultanah Aminah, Johor Bahru, Malaysia; Dermatology, Monash University Malaysia Clinical School Johor Bahru, Johor Bahru, Malaysia.
Dermatology, Centro Hospitalar do Porto, Porto, Portugal.
Research Department, International Alliance of Dermatology Patient Organizations, CA, Ottawa, United States.
Dermatology, Hospital Universitario Ramón y Cajal, Madrid, Spain; Faculty of Medicine, Universidad Francisco de Vitoria, Pozuelo de Alarcón, Spain.
Dermatology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
Dermatology, Chang Gung Memorial Hospital Kaohsiung Branch, Kaohsiung, Taiwan.
Dermatology, University of Chile, Santiago, Chile.
Dermatology, University Hospital Zurich, Zurich, Switzerland; Faculty of Medicine, University of Zurich, Zurich, Switzerland.
Dermatology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain; Department of Medicine, Universitat Autonoma de Barcelona, Barcelona, Spain; Institut de Recerca Sant Pau (IR SANT PAU), Barcelona, Spain.
The International Federation of Psoriasis Associations, Board of Directors, Yokohama, Japan.
Dermatology, Cairo University, Giza, Egypt.
Dermatology, Skin Health Institute, VIC, Carlton, Australia; Dermatology, The University of Melbourne, VIC, Melbourne, Australia.
Dermatology, McMaster University, CA, Hamilton, United States.
Division of Dermatology and Venereology, Geneva University Hospitals, Genève, Switzerland.
The International Federation of Psoriasis Associations, Psoriatic and Atopic Eczema Association, Vsetin, Czech Republic.
Psoriasis Association Taiwan, Secretariat, New Taipei, Taiwan.
Dermatology, CES University, CO, Medellín, United States.
Department of Medicine, University of Cape Town, Cape Town, South Africa.
Dermatology, Universidad de Antioquia, CO, Medellín, United States.
Dermatology, Icahn School of Medicine at Mount Sinai, NY, New York, United States.
Psoriasis Association of Singapore, Secretariat, Singapore.
Department of Value Improvement, St Antonius Hospital, Nieuwegein, Netherlands.
International Consortium for Health Outcomes Measurement, Outcomes Research, MA, Boston, United States.
Dermatology, Ghent University Hospital, Ghent, Belgium; Dermatology Research Unit, Ghent University, Ghent, Belgium.
Dermatology, Ghent University Hospital, Ghent, Belgium; Dermatology Research Unit, Ghent University, Ghent, Belgium.
Dermatology, University of Manchester, Manchester, United Kingdom.
Dermatology, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands.
Dermatology, Ghent University Hospital, Ghent, Belgium; Dermatology Research Unit, Ghent University, Ghent, Belgium.
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.
John Wiley & Sons, 2026. Vol. 40, nr 6, s. 1005-1018
patient outcome assessment, patient-centred care, patient-centred outcomes set, patient-relevant outcomes, psoriasis, value-based healthcare