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

Hewlett, Sarah; Nicklin, Joanna; Bode, Christina; Carmona, Loreto; Dures, Emma; Engelbrecht, M.; Hagel, Sofia; Kirwan, John R.; Moltó, Anna; Redondo, Marta; Gossec, Laure

doi:10.1093/rheumatology/kew011

Cited by 15 publications

(24 citation statements)

References 31 publications

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“…In France, the sample was ethnically representative but in both countries, the recruitment of Black and Asian patients was difficult because they are minorities among the population of patients attending the tertiary health centers which recruited participants to the study. Education levels were high, mainly in the sample from France, which is often the case in qualitative studies [29]. The characteristics of the sample may limit generalizability.…”

Section: Discussionmentioning

confidence: 92%

The effects of cultural background on patient-perceived impact of psoriatic arthritis - a qualitative study conducted in Brazil and France

et al. 2018

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Background: In psoriatic arthritis (PsA) almost all qualitative studies have been performed in European populations. This work aimed to evaluate the impact of PsA in Brazilian and French subjects, as well as to explore cultural differences in the experience of disease and to recognize domains important for patients living with PsA outside Europe. Methods: A qualitative study was conducted in two university hospitals in Brazil and France; outpatients fulfilling Classification Criteria for PsA participated in individual interviews regarding the impact of PsA; interviews were conducted in the local language. The sample size was defined by saturation; interviews were recorded and transcribed and content analysis was performed. Results: Fifteen patients were interviewed in Brazil and 13 in France. Mean disease duration was 16.5 ± 12.5 years (range: 8 months to 47 years) and 14.4 ± 8.4 years (range 12 months to 29 years) for Brazilian and French subjects, respectively. A broad impact was perceived: 67 codes emerged from the interviews and were grouped in 41 categories. Although 2/3 of categories were common to both nationalities, some important health domains from the perspective of PsA patients from a non-European background were brought to light including sexual dysfunction, emotional impact of psoriasis and impact of prejudice on social and professional life. Conclusions: This study highlights the importance of assessing the impact of PsA on a national level, emphasizing the common cross-cultural aspects but also revealing domains of interest for patients with PsA living outside Europe which merit further study.

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Section: Discussionmentioning

confidence: 92%

The effects of cultural background on patient-perceived impact of psoriatic arthritis - a qualitative study conducted in Brazil and France

et al. 2018

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“…Cognitive debrie ng was applied to improve the understandability of items by patients. Cognitive debrie ng is an important step and generally under-used [19]. The development process of the questionnaire involved a variety of experts, including physiotherapists, which is rarely the case.…”

Section: Discussionmentioning

confidence: 99%

“…This preliminary wording was then assessed for face validity, and reworded where needed, by 11 experts in rheumatology or physiotherapy. Finally, the preliminary questionnaire was tested by 14 patients with IA through cognitive debrie ng, and the items were reworded if needed [19]. For this, consecutive outpatients were contacted from one tertiary care hospital in France.…”

Section: Phase 2: Identi Cation Of the Questionnaire Itemsmentioning

confidence: 99%

Development and validation of a questionnaire to assess facilitators and barriers to physical activity for patients with rheumatoid arthritis, axial spondyloarthritis or psoriatic arthritis

Davergne

Moe

Fautrel

et al. 2020

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Objectives: The objective was to develop and validate a self-administered questionnaire to identify in people with Inflammatory arthritis (IA) Facilitators And Barriers to Physical activity (PA): the IFAB questionnaire. Methods: The development of the questionnaire included a systematic review of barriers and facilitators to PA to identify key themes, face validity assessment by 11 experts and cognitive debriefing with 14 patients. The psychometric properties of the questionnaire were assessed by convergent validity (Spearman correlation) against the modified Health Assessment Questionnaire (mHAQ), the Fear-Avoidance Beliefs Questionnaire subscale for PA and the Tampa Scale for Kinesiophobia, internal consistency (Cronbach α) in 63 IA patients with rheumatoid arthritis (RA), axial spondyloarthritis (axSpA) or psoriatic arthritis (PsA). Reliability and feasibility were assessed in 32 IA patients. Results: The questionnaire comprises 10 items: 4 assessing either barriers or facilitators, 3 assessing barriers and 3 assessing facilitators. The items are related to: psychological status (N=6), social support (N=2), disease (N=1), environmental factors (N=1). In the validation study of 63 patients: 26 RA, 24 axSpA, 13 PsA; mean age 52.8 (standard deviation 16.5) years, mean disease duration 12.5 (12.3) years, 53% women. The questionnaire was correlated (r=0.24) with mHAQ. Internal consistency (Cronbach α 0.69) and reliability (interclass coefficient 0.79 [95% confidence interval 0.59; 0.88]) were satisfactory, as was feasibility (missing data 12%, mean completion time <5 minutes).Conclusion: The questionnaire allows the assessment of barriers and facilitators to PA in patients with IA. This questionnaire may guide targeted interventions to increase levels of PA in these patients.

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“…The Portuguese version of the RAID, as well as many of its translations to other languages, was carried out by Mapi Institute, an organization specialized in PROs research. However, the Portuguese RAID required further input from a wider group of patients before the statistical evaluation of the underlying construct was carried out [ 19 ]. Our qualitative study (phase I) added more patients’ perspective into the Portuguese RAID, making it more meaningful to them.…”

Section: Discussionmentioning

confidence: 99%

“…This was a mixed methods study comprising two phases: (1) cognitive debriefing [ 19 ] with patients to assess face validity of the existing Portuguese version of RAID and (2) cross-cultural validation of the Portuguese RAID to assess its construct validity, reliability and cross-cultural invariance.…”

Section: Participants and Methodsmentioning

confidence: 99%

The Portuguese Rheumatoid Arthritis Impact of Disease (RAID) score and its measurement equivalence in three countries: validation study using Rasch Models

et al. 2018

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PurposeThe Rheumatoid Arthritis Impact of Disease (RAID) score assesses seven impact domains of interest for people with RA. This study aimed to test patients’ understanding of the Portuguese RAID and evaluate its cross-cultural validity for use in Portugal.MethodsThis was a mixed methods study comprising two phases: (i) cognitive debriefing to determine patient’s comprehension of the Portuguese RAID and (ii) cross-cultural validation using Rasch analysis. Construct validity was determined by fit to the model, invariance culture (compared with France and UK datasets) and evidence of convergent and divergent validity.ResultsPatients’ input (n = 38) led to minor changes in the phrasing of two items to ensure conceptual equivalence between the Portuguese and the original RAID. In Rasch analysis (n = 288), two items ‘Sleep’ and ‘Physical well-being’ in the Portuguese dataset did not adequately fit the model specifications, suggesting multidimensionality (sleep—not necessarily associated with RA) and redundancy (physical well-being overlapping with functional disability). Despite the imperfections, the scale had high internal consistency, evidence of convergent and divergent validity and invariance to culture (compared to France n = 195 and UK n = 205 datasets). The scale was well targeted for patients with different levels of disease impact.ConclusionsThe RAID has been successfully adapted into Portuguese and it can be used with confidence in clinical practice. Further research will be required to ensure it captures the full range of sleep problems in RA. Meanwhile, data across the three countries (Portugal, France and the UK) are comparable except for the two items (sleep and physical well-being).Electronic supplementary materialThe online version of this article (10.1007/s11136-018-1959-4) contains supplementary material, which is available to authorized users.

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

Cited by 15 publications

References 31 publications

The effects of cultural background on patient-perceived impact of psoriatic arthritis - a qualitative study conducted in Brazil and France

The effects of cultural background on patient-perceived impact of psoriatic arthritis - a qualitative study conducted in Brazil and France

Development and validation of a questionnaire to assess facilitators and barriers to physical activity for patients with rheumatoid arthritis, axial spondyloarthritis or psoriatic arthritis

The Portuguese Rheumatoid Arthritis Impact of Disease (RAID) score and its measurement equivalence in three countries: validation study using Rasch Models

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