Cross-cultural adaptation and linguistic validation of age-group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents

Haemophilia ◽  
2012 ◽  
Vol 19 (2) ◽  
pp. e73-e83 ◽  
Author(s):  
S. von Mackensen ◽  
I. G. Campos ◽  
C. Acquadro ◽  
M. Strandberg-Larsen
Keyword(s):  
Cultural Adaptation ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Age Group ◽  
Linguistic Validation ◽  
Cross Cultural Adaptation ◽  
Patient Reported ◽  
Pro Instruments

scholarly journals Toward Ensuring Health Equity: Readability and Cultural Equivalence of OMERACT Patient-reported Outcome Measures

2015 ◽  
Vol 42 (12) ◽  
pp. 2448-2459 ◽  
Author(s):  
Jennifer Petkovic ◽  
Jonathan Epstein ◽  
Rachelle Buchbinder ◽  
Vivian Welch ◽  
Tamara Rader ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Cultural Adaptation ◽  
Working Group ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Low Literacy ◽  
Cross Cultural Adaptation ◽  
Patient Reported

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.

scholarly journals Community translation in the context of the translation and cross-cultural adaptation of patient reported outcome measures: a South African perspective

2021 ◽  
Vol 51 (2) ◽  
Author(s):  
Susan de Klerk ◽  
Harold M. Lesch
Keyword(s):  
Outcome Measures ◽  
Cultural Adaptation ◽  
English Language ◽  
Health Sector ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Cross Cultural Adaptation ◽  
Cultural Adaption ◽  
Patient Reported

ABSTRACT INTRODUCTION: Occupational Therapists should use relevant patient reported outcome measures as part of providing evidence for occupational therapy intervention. Measures must be responsive, valid and reliable for use in all health sectors. An essential requirement is that the measure be available in the language of the populations it is intended for. As most measures are developed in the English language for use in English speaking countries, we put forward an opinion on the practice of community translation during the translation and cross-cultural adaption of patient reported outcome measures towards increased clinical utility in the public health sector of South Africa Keywords: patient reported outcome measures, translation and cross-cultural adaptation, community translation

scholarly journals Good practices for the translation, cultural adaptation, and linguistic validation of clinician-reported outcome, observer-reported outcome, and performance outcome measures

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Shawn McKown ◽  
Catherine Acquadro ◽  
Caroline Anfray ◽  
Benjamin Arnold ◽  
Sonya Eremenco ◽  
...  
Keyword(s):  
Cultural Adaptation ◽  
Patient Reported Outcome ◽  
Validation Process ◽  
Linguistic Validation ◽  
Performance Outcome ◽  
Industry Standard ◽  
Patient Reported ◽  
And Performance ◽  
Clinical Outcome Assessments ◽  
Translation And Cultural Adaptation

Abstract Within current literature and practice, the category of patient-reported outcome (PRO) measures has been expanded into the broader category of clinical outcome assessments (COAs), which includes the subcategory of PRO, as well as clinician-reported outcome (ClinRO), observer-reported outcome (ObsRO), and performance outcome (PerfO) measure subcategories. However, despite this conceptual expansion, recommendations associated with translation, cultural adaptation, and linguistic validation of COAs remain focused on PRO measures, which has created a gap in specific process recommendations for the remaining types. This lack of recommendations has led to inconsistent approaches being implemented, leading to uncertainty in the scientific community regarding suitable methods. To address this gap, the ISOQOL Translation and Cultural Adaptation Special Interest Group (TCA-SIG) has developed recommendations specific to each of the three COA types currently lacking such documentation to support a standardized approach to their translation, cultural adaptation, and linguistic validation. The recommended process utilized to translate ObsRO, ClinRO and PerfO measures from one language to another aligns closely with the industry standard process for PRO measures. The substantial differences between respondent categories across COA types require targeted approaches to the cognitive interviewing procedures utilized within the linguistic validation process, including the use of patients for patient-facing text in ClinRO measures, and the need to interview the targeted observers for ObsROs measures.

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