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

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21

 

  1. Division of Rheumatology, Rush University Medical Center, Chicago, USA. isabelcastrejonf@gmail.com
  2. Instituto de Salud Musculoesquelética, Madrid, Spain.
  3. University of Lorraine, APEMAC EA 4360, Nancy, F-54500; France & Inserm CIC-EC, 1433, Nancy, F-54500, France.
  4. Seccion de Reumatologia. Hospital, General Universitario de Alicante, Alicante, Spain.
  5. Paris-Descartes University, Medicine Faculty, Cochin Hospital, Paris, France.
  6. Mapi Research Trust, France.
  7. Musculoskeletal Statistics Unit, The Parker Institute, Department of Rheumatology, Copenhagen University Hospital, Bispebjerg and Frederiksberg, Denmark.
  8. Istituto Giannina Gaslini, Genoa, Italy.
  9. Instituto de Salud Musculoesquelética and Universidad de Valladolid, Spain.
  10. Health Services Research Group, Medical Research Institute (Hospital del Mar), Barcelona, Spain. Coordinator of BiblioPRO.
  11. UPMC Univ Paris 06, GRC-UPMC 08 (EEMOIS); AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France.
  12. Universidad Camilo José Cela, Madrid, Spain.
  13. University of Lorraine, APEMAC EA 4360, Nancy, F-54500; France & Inserm CIC-EC, 1433, Nancy, F-54500, France.
  14. Coimbra University Hospital, Coimbra, Portugal; and MRC Centre for Neuromuscular Diseases, University College London, London, UK.
  15. Swiss Paraplegic Research, ICF Unit, Nottwil, Switzerland.
  16. University of Genoa and Institute Giannina Gaslini, Genoa, Italy.
  17. Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands.
  18. National Resource Center for Rehabilitation in Rheumatology, Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway.
  19. Department of Rheumatology, VU University Medical Center, Amsterdam, The Netherlands.
  20. German Rheumatism Research Centre and Charité University Medicine, Berlin, Germany.
  21. UPMC Univ Paris 06, GRC-UPMC 08 (EEMOIS); AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France.

CER7860
2015 Vol.33, N°6
PI 0910, PF 0916
Review

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PMID: 25797345 [PubMed]

Received: 22/08/2014
Accepted : 09/01/2015
In Press: 23/03/2015
Published: 15/12/2015

Abstract

OBJECTIVES:
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.

Rheumatology Article

Rheumatology Addendum