The EULAR Outcome Measures Library: development and an example from a systematic review for systemic lupus...

Area of Science:

• Rheumatology
• Clinical Outcomes Assessment
• Health Informatics

Background:

• Patient-reported outcomes (PROs) are crucial in rheumatology but face challenges in accessibility and validity, hindering consistent evidence synthesis.
• Standardizing the use of PROs is essential for reliable research and clinical practice in rheumatology.

Purpose of the Study:

• To establish a comprehensive, user-friendly library of validated PROs for rheumatology.
• To improve the homogeneity and reliability of evidence synthesis in rheumatic diseases.

Main Methods:

• A multidisciplinary launch meeting defined the library's scope and requirements.
• Systematic reviews were conducted to identify and evaluate PROs using standardized data collection forms based on the COSMIN checklist.

Main Results:

• The EULAR Outcomes Measures Library (OML) has been launched, providing a scientifically grounded and accessible resource for PROs.
• The library includes 236 instruments (106 generic, 130 disease-specific) covering multiple rheumatic conditions.
• Detailed information on construct validity, recommendations for use, and available versions is provided for each PRO.

Conclusions:

• The OML is an evolving resource developed collaboratively by rheumatologists, professionals, and patients.
• It aims to enhance the understanding and application of PROs in rheumatic and musculoskeletal diseases.