1. Updating the OMERACT Filter: Implications for Patient-reported Outcomes
- Author
-
M. Voshaar, Anne Lyddiatt, Wilma Smeets, Amye L. Leong, James W. May, T.K. Kvien, Pamela Montie, Maarten Boers, John R. Kirwan, Dorcas E. Beaton, Peter Tugwell, Susan J. Bartlett, Lyn March, Vibeke Strand, Ernest Choy, Ailsa Bosworth, Laure Gossec, Sarah Hewlett, Pam Richards, Peter Brooks, Francis Guillemin, Maarten de Wit, Robert Landewé, Enkeleida Nikaï, Institute for Work and Health (IWH), University of Toronto-St. Michael's Hospital-Institute of Medical Sciences, Department of Clinical Epidemiology and Biostatistics, VU University Medical Center [Amsterdam], National Rheumatoid Arthritis Society (NRAS), Institut Jacques Monod (IJM (UMR_7592)), Université Paris Diderot - Paris 7 (UPD7)-Centre National de la Recherche Scientifique (CNRS), EULAR standing committee of People with Arthritis/Rheumatism in Europe (PARE), Ecole de Santé Publique [Nancy], Faculté de Médecine [Nancy], Université de Lorraine (UL)-Université de Lorraine (UL), Maladies chroniques, santé perçue, et processus d'adaptation (APEMAC), Université Paris Descartes - Paris 5 (UPD5)-Université de Lorraine (UL), Université Sorbonne Paris Cité (USPC), Dpt of Clinical Immunology & Rheumatology [Amsterdam], Amsterdam and Atrium Medical Center, Institute of Bone & Joint Research, Royal North Shore Hospital (RNSH)-The University of Sydney, Stanford School of Medicine [Stanford], Stanford Medicine, Stanford University-Stanford University, University of Ottawa [Ottawa], Hôpital Cochin [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Stanford University School of Medicine [Stanford], Stanford University [Stanford], University of Ottawa [Ottawa] (uOttawa), CHU Cochin [AP-HP], Institute for Work and Health ( IWH ), University Medical Center, National Rheumatoid Arthritis Society ( NRAS ), Institut Jacques Monod ( IJM ), Université Paris Diderot - Paris 7 ( UPD7 ) -Centre National de la Recherche Scientifique ( CNRS ), Université de Lorraine ( UL ) -Université de Lorraine ( UL ), Maladies chroniques, santé perçue, et processus d'adaptation. Approches épidémiologiques et psychologiques. ( APEMAC - EA 4360 ), Université de Lorraine ( UL ) -Université Paris Descartes - Paris 5 ( UPD5 ), Université Sorbonne Paris Cité ( USPC ), Royal North Shore Hospital ( RNSH ) -The University of Sydney [Sydney], Amsterdam institute for Infection and Immunity, Clinical Immunology and Rheumatology, Epidemiology and Data Science, Rheumatology, and CCA - Innovative therapy
- Subjects
medicine.medical_specialty ,MESH: Self Report ,International studies ,Immunology ,Alternative medicine ,MESH : Rheumatic Diseases ,MESH : Self Report ,MESH : Randomized Controlled Trials as Topic ,Outcome (game theory) ,Filter (software) ,Session (web analytics) ,MESH: Patient Participation ,law.invention ,MESH: Rheumatic Diseases ,Randomized controlled trial ,Rheumatology ,law ,Rheumatic Diseases ,MESH: Rheumatology ,MESH : Outcome and Process Assessment (Health Care) ,Immunology and Allergy ,Medicine ,Humans ,Good practice ,MESH : Rheumatology ,OUTCOME AND PROCESS ASSESSMENT ,Randomized Controlled Trials as Topic ,RANDOMIZED CONTROLLED TRIALS ,Medical education ,MESH: Humans ,business.industry ,MESH : Reproducibility of Results ,MESH : Humans ,Reproducibility of Results ,[ SDV.SPEE ] Life Sciences [q-bio]/Santé publique et épidémiologie ,MESH : Patient Participation ,MESH: Reproducibility of Results ,Outcome and Process Assessment, Health Care ,MESH: Randomized Controlled Trials as Topic ,PATIENT-REPORTED OUTCOMES ,[SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie ,Self Report ,Patient Participation ,business ,Working group ,MESH: Outcome and Process Assessment (Health Care) - Abstract
Objective.At a previous Outcome Measures in Rheumatology (OMERACT) meeting, participants reflected on the underlying methods of patient-reported outcome (PRO) instrument development. The participants requested proposals for more explicit instrument development protocols that would contribute to an enhanced version of the “Truth” statement in the OMERACT Filter, a widely used guide for outcome validation. In the present OMERACT session, we explored to what extent these new Filter 2.0 proposals were practicable, feasible, and already being applied.Methods.Following overview presentations, discussion groups critically reviewed the extent to which case studies of current OMERACT Working Groups complied with or negated the proposed PRO development framework, whether these observations had a more general application, and what issues remained to be resolved.Results.Several aspects of PRO development were recognized as particularly important, and the need to directly involve patients at every stage of an iterative PRO development program was endorsed. This included recognition that patients contribute as partners in the research and not merely as subjects. Correct communication of concepts with the words used in questionnaires was central to their performance as measuring instruments, and ensuring this understanding crossed cultural and linguistic boundaries was important in international studies or comparisons.Conclusion.Participants recognized, endorsed, and were generally already putting into practice the principles of PRO development presented in the plenary session. Further work is needed on some existing instruments and on establishing widespread good practice for working in close collaboration with patients.
- Published
- 2014
- Full Text
- View/download PDF