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Translating patient reported outcome measures: Methodological issues explored using cognitive interviewing with three rheumatoid arthritis measures in six European languages

Bode, Chistina; Hagel, Sofia; Hewlett, Sarah; Bode, Christina; Nicklin, Joanna; Carmona, Loreto; Dures, Emma; Hagel, Sophia; Engelbrecht, Matthias; Kirwan, John; Molto, Anna; Redondo, Marta; Gossec, Laure

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Authors

Chistina Bode

Sofia Hagel

Christina Bode

Joanna Nicklin

Loreto Carmona

Emma Dures Emma2.Dures@uwe.ac.uk
Professor in Rheumatology and Self-management

Sophia Hagel

Matthias Engelbrecht

John Kirwan

Anna Molto

Marta Redondo

Laure Gossec



Abstract

© The Author 2016. Objective. Cross-cultural translation of patient-reported outcome measures (PROMs) is a lengthy process, often performed professionally. Cognitive interviewing assesses patient comprehension of PROMs. The objective was to evaluate the usefulness of cognitive interviewing to assess translations and compare professional (full) with non-professional (simplified) translation processes. Methods. A full protocol used for the Bristol RA Fatigue Multi-dimensional Questionnaire and Numerical Rating Scale (BRAF-MDQ, BRAF-NRS) was compared with a simplified protocol used for the RA Impact of Disease scale (RAID). RA patients in the UK, France, the Netherlands, Germany, Spain and Sweden completed the PROMs during cognitive interviewing (BRAFs in the UK were omitted as these were performed during development). Transcripts were deductively analysed for understanding, information retrieval, judgement and response options. Usefulness of cognitive interviewing was assessed by the nature of problems identified, and translation processes by percentage of consistently problematic items (≥40% patients per country with similar concerns). Results. Sixty patients participated (72% women). For the BRAFs (full protocol) one problematic item was identified (of 23 items × 5 languages, 1/115 = 0.9%). For the RAID (simplified protocol) two problematic items were identified (of 7 items × 6 languages, 2/42 = 4.8%), of which one was revised (Dutch). Coping questions were problematic in both PROMs. Conclusion. Conceptual and cultural challenges though rare were important, as identified by formal evaluation, demonstrating that cognitive interviewing is crucial in PROM translations. Proportionately fewer problematic items were found for the full than for the simplified translation procedure, suggesting that while both are acceptable, professional PROM translation might be preferable. Coping may be a particularly challenging notion cross-culturally.

Journal Article Type Article
Acceptance Date Jan 12, 2016
Publication Date Jun 1, 2016
Deposit Date Feb 10, 2016
Publicly Available Date Feb 24, 2017
Journal Rheumatology (United Kingdom)
Print ISSN 1462-0324
Electronic ISSN 1462-0332
Publisher Oxford University Press (OUP)
Peer Reviewed Peer Reviewed
Volume 55
Issue 6
Pages 1009-1016
DOI https://doi.org/10.1093/rheumatology/kew011
Keywords patient reported outcome measures, translation, cognitive interviewing, Bristol Rheumatoid Arthritis Fatigue (BRAF) scales, Rheumatoid Arthritis Impact of Disease scale (RAID)
Public URL https://uwe-repository.worktribe.com/output/919690
Publisher URL http://dx.doi.org/10.1093/rheumatology/kew011
Additional Information Additional Information : This is a pre-copyedited, author-produced PDF of an article accepted for publication in Rheumatology following peer review. The version of record Hewlett, S., Nicklin, J., Bode, C., Carmona, L., Dures, E., Engelbrecht, M., Hagel, S., Kirwan, J., MOLTO, A., Redondo, M. and Gossec, L. (2016) Translating patient reported outcome measures: Methodological issues explored using cognitive interviewing with three rheumatoid arthritis measures in 6 European languages. Rheumatology, 55 (6). pp.1009-1016 is available online at: http://rheumatology.oxfordjournals.org/content/early/2016/02/23/rheumatology.kew011.abstract?sid=4617bf8a-91ec-44ff-a6e9-fda849175419
Contract Date Feb 10, 2016

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