Building the foundations for an international patient-centred outcomes set for psoriasis: A scoping study

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.

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.

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.

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.

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.