Development of an ICF Core Set in patients with Psoriasis or Psoriatic Arthritis

Dr. William Taylor (Otago, New Zeland)
Psoriasis (PS) is a chronic inflammatory skin condition characterized by red, scaly plaques over extensor surfaces and elsewhere, with an unpredictable relapsing and remitting course. It is associated with significant physical and social problems. Psoriatic arthritis (PSA) is an inflammatory arthritis associated with psoriasis characterized by painful swollen joints, spinal involvement, enthesitis and dactylitis. It occurs in about 15% of people with PS and has significant functional and quality-of-life consequences.
The Group for Research and Assessment in Psoriasis and Psoriatic Arthritis (GRAPPA) was first convened at the American College of Rheumatology meeting in New Orleans, Oct 2002. This group of rheumatologists and dermatologists has made significant progress towards identifying a "core set" of outcome measures for use in different kinds of clinical studies in PSA. This work recently culminated in the 2004 OMERACT (Outcome Measures in Rheumatology Clinical Trials) Conference, in which a research agenda concerning outcome measures in PSA was formulated.
Two important areas of assessment were highlighted at the OMERACT meeting. Firstly, "function" was seen as a vital area but that no condition-specific assessment tools had been developed for use in PSA. Secondly, the ICF concept of "participation" was promoted but that no satisfactory method of measuring this concept had been established. These two areas were seen as important items for the research agenda.
Therefore, a project has been developed in association with GRAPPA and ICF Research Branch of the WHO Collaborating Center for the Family of International Classifications at the German Institute of Medical Documentation and Information (DIMDI), led by Dr William Taylor, University of Otago, New Zealand and Prof. Dr. Wolf-Henning Boehncke, Johann Wolfgang Goethe-University, Frankfurt. The project will follow a similar format to other ICF Core Set studies: phase 1 studies that include a review of existing instruments, Delphi exercise of health professionals, focus groups with patients, and an ICF Checklist study; a phase 2 consensus conference is planned for late Spring 2006 followed by the phase 3 validation project.
Any health-professional interested in psoriasis or psoriatic arthritis is encouraged to contact Dr Taylor (wtaylor@wnmeds.ac.nz) if they would like to contribute to the project, especially the Delphi exercise, which is due to commence in January 2005.