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

  • Objective: Patient reported outcomes (PROs) are relevant in rheumatology. Variable accessibility and validity of commonly used PROs are obstacles to homogeneity in evidence synthesis. The objective of this project was to provide a comprehensive library of “validated PROs”. Methods: A launch meeting with rheumatologists, PROs methodological experts, and patients, was held to define the library’s aims and scope, and basic requirements. To feed the library we performed systematic reviews on selected diseases and domains. Relevant information on PROs was collected using standardised data collection forms based on the COSMIN checklist. Results: The EULAR Outcomes Measures Library (OML), whose aims are to provide and to advise on PROs on a user-friendly manner albeit based on scientific grounds, has been launched and made accessible to all. PROs currently included cover any domain and, are generic or specifically target to the following diseases: rheumatoid arthritis, osteoarthritis, spondyloarthritis, low back pain, systemic lupus erythematosus, gout, osteoporosis, juvenile idiopathic arthritis, and fibromyalgia. Up to 236 instruments (106 generic and 130 specific) have been identified, evaluated, and included. The systematic review for SLE, which yielded 10 specific instruments, is presented here as an example. The OML website includes, for each PRO, information on the construct being measured and the extent of validation, recommendations for use, and available versions; it also contains a glossary on common validation terms. Conclusion: The OML is an in progress library led by rheumatologists, related professionals and patients, that will help to better understand and apply PROs in rheumatic and musculoskeletal diseases.

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Author:I. Castrejon, L. Carmona, N. Agrinier, M. Andres, K. Briot, M. Caron, R. Christensen, A. Consolaro, R. Curbelo, M. Ferrer, V. Foltz, C. Gonzalez, F. Guillemin, P. Machado, Birgit Prodinger, A. Ravellil, M. Scholte-Voshaar, T. Uhlig, L. van Tuyl, A. Zink, L. Gossec
Parent Title (English):Clinical and Experimental Rheumatology
Document Type:Article (peer reviewed)
Publication Year:2015
Tag:Lupus erythematous; Outcome measures; Rheuma; Systematic Review
First Page:910
Last Page:916
Peer reviewed:Ja
faculties / departments:Fakultät für Angewandte Gesundheits- und Sozialwissenschaften
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit