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What outcomes matter most to people living with psoriasis, and how should clinicians measure them? A new paper published in the Journal of the European Academy of Dermatology and Venereology (JEADV) takes a significant step toward answering that question, and IPC played a direct role in making it happen.
The paper, Building the Foundations for an International Patient-Centred Outcomes Set for Psoriasis: A Scoping Study, led by IPC Councilor Professor Jo Lambert, presents a refined set of 18 patient-relevant outcomes for psoriasis. This set is the foundation for what could become the first internationally validated, patient-centred outcomes framework for the disease, which will subsequently be validated through a Delphi procedure and published soon.
“Psoriasis affects far more than the skin,” said Professor Lambert, describing the motivation behind the work. “For outcomes measurement to be meaningful, it has to reflect what patients actually live with, including stigmatization, emotional well-being, and how confident they feel in their care. This work brings us closer to a framework that captures that reality.”
How IPC Contributed
The Working Group behind this research was established through IPC and the International Federation of Psoriasis Associations (IFPA), a long-standing IPC partner. IPC shared the call for participation with its global membership, and the response was substantial. Seventeen IPC Members ultimately contributed as authors, representing countries across Europe, the Eastern Mediterranean, Latin America & Caribbean, North America, South-East Asia, and the Western Pacific.
Among the contributors were IPC Board Members Siew Eng Choon (Malaysia) and Lluís Puig (Spain); IPC Honorary Founder Christopher EM Griffiths (United Kingdom); IPC Chief Medical Officer Peter van de Kerkhof (Netherlands); and IPC Councilors including Hazel Oon (Singapore), Chih-Hung Lee (Taiwan), Fernando Valenzuela (Chile), Anna López-Ferrer (Spain), Julia-Tatjana Maul (Switzerland), Wolf-Henning Boehncke (Switzerland), Marcus Schmitt-Egenolf (Sweden), Tiago Torres (Portugal), Mark Lebwohl (United States), Ronald Vender (Canada), Peter Foley (Australia), and Mohamed El-Komy (Egypt).
Professor Peter van de Kerkhof, IPC’s Chief Medical Officer, reflected on why the collaboration made sense, saying, “IPC exists to connect dermatologists across borders. When Professor Lambert reached out, it was a natural fit. This is exactly the kind of international collaborative research our network was built to contribute to.”
What the Research Found
The scoping study brought together 35 experts, including 12 patient representatives and 23 dermatologists, from 22 countries. Through three virtual discussion meetings and two surveys, the group refined earlier Belgian outcomes set into a proposed international framework.
Key changes included merging overlapping outcomes, adding patient-recommended outcomes such as feelings of stigmatization and the number of flare-ups, and reclassifying communication with healthcare professionals and confidence in care as patient experiences rather than outcomes. The result is a proposed patient-centered outcomes set across five domains: resource use, adverse events, life impact, clinical and physical outcomes, and patient experiences.
The process also surfaced a consistent finding: patients and dermatologists do not always prioritize the same things. Patients placed greater weight on psychosocial outcomes, stigmatization, and the quality of their relationship with their healthcare team. Dermatologists tended to focus on clinical measures like clearance and symptom control. Both perspectives are reflected in the proposed set.
What Comes Next
This scoping study is the second phase of a larger project. The next step is an international Delphi process that will advance the proposed set toward formal consensus and, ultimately, implementation in routine clinical care.
For Professor Lambert, the Delphi represents the critical next step. “The Delphi will be the real test,” she said. “Our goal is a set that is rigorous enough to be meaningful and practical enough to use in the clinic every day. Getting there requires the kind of global input that IPC and IFPA made possible.”
The full paper is open access and available at dx.doi.org/10.1111/jdv.70313.
Reference
Building the Foundations for an International Patient-Centred Outcomes Set for Psoriasis: A Scoping Study. Vyvey E, Soenen R, Oon HH, et al. J Eur Acad Dermatol Venereol. 2026;40:1005–1018. https://doi.org/10.1111/jdv.70313.
