title: The EULAR Outcome Measures Library: development and an example from a systematic review for systemic lupus erythematous instruments.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors: Division of Rheumatology, Rush University Medical Center, Chicago, USA. isabelcastrejonf@gmail.com.
authors: I
authors: I
authors: Castrejon
authors: Instituto de Salud Musculoesquelética, Madrid, Spain.
authors: L
authors: L
authors: Carmona
authors: University of Lorraine, APEMAC EA 4360, Nancy, F-54500; France & Inserm CIC-EC, 1433, Nancy, F-54500, France.
authors: N
authors: N
authors: Agrinier
authors: Seccion de Reumatologia. Hospital, General Universitario de Alicante, Alicante, Spain.
authors: M
authors: M
authors: Andres
authors: Paris-Descartes University, Medicine Faculty, Cochin Hospital, Paris, France.
authors: K
authors: K
authors: Briot
authors: Mapi Research Trust, France.
authors: M
authors: M
authors: Caron
authors: Musculoskeletal Statistics Unit, The Parker Institute, Department of Rheumatology, Copenhagen University Hospital, Bispebjerg and Frederiksberg, Denmark.
authors: R
authors: R
authors: Christensen
authors: Istituto Giannina Gaslini, Genoa, Italy.
authors: A
authors: A
authors: Consolaro
authors: Instituto de Salud Musculoesquelética and Universidad de Valladolid, Spain.
authors: R
authors: R
authors: Curbelo
authors: Health Services Research Group, Medical Research Institute (Hospital del Mar), Barcelona, Spain. Coordinator of BiblioPRO.
authors: Montserrat
authors: M
authors: Ferrer
authors: UPMC Univ Paris 06, GRC-UPMC 08 (EEMOIS); AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France.
authors: Violaine
authors: V
authors: Foltz
authors: Universidad Camilo José Cela, Madrid, Spain.
authors: C
authors: C
authors: Gonzalez
authors: University of Lorraine, APEMAC EA 4360, Nancy, F-54500; France & Inserm CIC-EC, 1433, Nancy, F-54500, France.
authors: F
authors: F
authors: Guillemin
authors: Coimbra University Hospital, Coimbra, Portugal; and MRC Centre for Neuromuscular Diseases, University College London, London, UK.
authors: P M
authors: PM
authors: Machado
authors: Swiss Paraplegic Research, ICF Unit, Nottwil, Switzerland.
authors: Birgit
authors: B
authors: Prodinger
authors: University of Genoa and Institute Giannina Gaslini, Genoa, Italy.
authors: A
authors: A
authors: Ravelli
authors: Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands.
authors: M
authors: M
authors: Scholte-Voshaar
authors: National Resource Center for Rehabilitation in Rheumatology, Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway.
authors: T
authors: T
authors: Uhlig
authors: Department of Rheumatology, VU University Medical Center, Amsterdam, The Netherlands.
authors: L H D
authors: LH
authors: van Tuyl
authors: German Rheumatism Research Centre and Charité University Medicine, Berlin, Germany.
authors: A
authors: A
authors: Zink
authors: UPMC Univ Paris 06, GRC-UPMC 08 (EEMOIS); AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France.
authors: L
authors: L
authors: Gossec
mesh_terms: D055317:Evidence-Based Practice; D006801:Humans; D016243:Library Collection Development; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000628:therapy; D010043:Outcome and Process Assessment, Health Care / Q000592:standards*; D010346:Patient Care Management / Q000379:methods / Q000592:standards; D015203:Reproducibility of Results