ICF Core Sets: how to specify impairment and function in systemic lupus erythematosus

The World Health Organization’s International Classification of
Function (ICF) is a tool to characterize and illuminate better the
full of array of problems a patient faces when affected by disease.
Specifying these problems is a particular challenge in a disease
like systemic lupus erythematosus (SLE) because of the wide variety
in organ systems involved, its variable activity and severity, and
considerable ethnic and local differences. The authors of this
manuscript believe, however, that a broader understanding will
prove essential for optimal patient care, and that there is
sufficient experience now in defining ICF Core Sets to successfully
complete core sets for SLE. Therefore, we will embark on an
international project for developing ICF Core Sets for SLE, which
we here delineate. This development will include two versions: 1)
The Brief ICF Core Set for SLE will be a very focused list of
categories essential for SLE clinical trials; and 2) The
Comprehensive ICF Core Set will be much broader and useful for
guiding multidisciplinary assessment in patients with SLE. Both
Core Sets will be developed in a formal decision-making and
consensus process of health professionals integrating evidence
gathered from preliminary studies. The final definition of the Core
Sets will occur at a consensus conference which will integrate: i)
a systematic review of the literature regarding the outcome
measures used in clinical trials and selected observational
studies; ii) focus groups or semi-structured interviews with SLE
patients; iii) a Delphi exercise with world wide involvement of
experts; and iv) the evidence from empirical studies. The
development of these SLE ICF Core Sets is designed to be an
inclusive, open, worldwide process. We therefore invite both SLE
clinical experts and SLE patients to participate actively.