ICF core sets: how to specify impairment and function in systemic lupus erythematosus

Area of Science:

• Rehabilitation medicine
• Rheumatology
• Health services research

Background:

• The World Health Organization's International Classification of Function (ICF) provides a framework for understanding patient functioning.
• Systemic lupus erythematosus (SLE) presents unique challenges for functional assessment due to its multi-systemic nature and variability.
• Developing standardized ICF Core Sets for SLE is crucial for consistent and comprehensive patient evaluation.

Purpose of the Study:

• To initiate an international project for developing ICF Core Sets for Systemic Lupus Erythematosus (SLE).
• To create two versions: a Brief ICF Core Set for clinical trials and a Comprehensive ICF Core Set for multidisciplinary assessments.
• To ensure the development process is inclusive, open, and globally representative.

Main Methods:

• A formal decision-making and consensus process involving health professionals.
• Integration of evidence from preliminary studies, systematic literature reviews, patient focus groups, and Delphi exercises with global experts.
• A consensus conference to finalize the ICF Core Sets for SLE.

Main Results:

• The project aims to establish ICF Core Sets tailored to the complexities of SLE.
• Two distinct sets will be developed: a brief version for trials and a comprehensive version for clinical practice.
• The process emphasizes evidence-based methods and global expert and patient input.

Conclusions:

• The development of ICF Core Sets for SLE is essential for enhancing patient care and research.
• These standardized tools will facilitate better characterization of patient problems in SLE.
• The inclusive, worldwide development process invites active participation from SLE experts and patients.