Abstract
Objective. The goal of the Outcome Measures in Rheumatology (OMERACT) 12 (2014) equity working group was to determine whether and how comprehensibility of patient-reported outcome measures (PROM) should be assessed, to ensure suitability for people with low literacy and differing cultures.
Methods. The English, Dutch, French, and Turkish Health Assessment Questionnaires and English and French Osteoarthritis Knee and Hip Quality of Life questionnaires were evaluated by applying 3 readability formulas: Flesch Reading Ease, Flesch-Kincaid grade level, and Simple Measure of Gobbledygook; and a new tool, the Evaluative Linguistic Framework for Questionnaires, developed to assess text quality of questionnaires. We also considered a study assessing cross-cultural adaptation with/without back-translation and/or expert committee. The results of this preconference work were presented to the equity working group participants to gain their perspectives on the importance of comprehensibility and cross-cultural adaptation for PROM.
Results. Thirty-one OMERACT delegates attended the equity session. Twenty-six participants agreed that PROM should be assessed for comprehensibility and for use of suitable methods (4 abstained, 1 no). Twenty-two participants agreed that cultural equivalency of PROM should be assessed and suitable methods used (7 abstained, 2 no). Special interest group participants identified challenges with cross-cultural adaptation including resources required, and suggested patient involvement for improving translation and adaptation.
Conclusion. Future work will include consensus exercises on what methods are required to ensure PROM are appropriate for people with low literacy and different cultures.
Footnotes
As an OMERACT Fellow, J. Epstein received a bursary from the European League Against Rheumatism and support from OMERACT to attend the meeting; F. Guillemin was supported by La Mission Recherche de la Direction de la recherche, des études, de l’évaluation et des statistiques as part of financial support provided to Institut de Recherche en Santé Publique, in the domain of handicap and loss of autonomy; R. Buchbinder is supported in part by an Australian National Health and Medical Research Council Practitioner Fellowship; conference attendance for A. Lyddiatt was made possible by The Arthritis Society, Canada; J. Barton received support from the American College of Rheumatology, Rheumatology Research Foundation, to attend the meeting; C. Flurey is funded by an Arthritis Research UK Fellowship and received support from OMERACT to attend the meeting; C. Barnabe receives salary support from the Canadian Rheumatology Association and The Arthritis Society Clinician Investigator Award, and is a Canadian Institutes of Health Research New Investigator (Community-Based Primary Health Care); R. Christensen is supported by grants from the Oak Foundation; J.A. Singh is supported by grants from the Agency for Health Quality and Research Center for Education and Research on Therapeutics U19 HS021110, US National Institute of Arthritis, Musculoskeletal and Skin Diseases P50 AR060772 and U34 AR062891, National Institute on Aging U01 AG018947, National Cancer Institute U10 CA149950, the resources and the use of facilities at the VA Medical Center at Birmingham, Alabama, and research contract CE-1304-6631 from the Patient Centered Outcomes Research Institute.
