Pcn134 Dealing With Culturally Sensitive Questions in the Course of Translating Eortc Quality-of-Life Group Questionnaires

Kuliš, Danijela; Jeglikova, P; Greimel, Elfriede; Bottomley, Andrew; Koller, M

doi:10.1016/s1098-3015(11)72029-0

Cited by 41 publications

(84 citation statements)

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“…Reviews have been done to describe common components of translation methods (e.g. use of forward and back translations, consensus meetings) [15, 83] and guidelines and recommendations are published [30, 76, 84] but qualitative studies that include examination of the core elements of a translation procedure are uncommon. It is critical that a PROM translation method can detect errors in the translation, can identify the introduction of linguistically correct but hard-to-understand wording in the target language, and can determine the acceptability of the underlying concepts to the local culture.…”

Section: Discussionmentioning

confidence: 99%

Application of validity theory and methodology to patient-reported outcome measures (PROMs): building an argument for validity

2018

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BackgroundData from subjective patient-reported outcome measures (PROMs) are now being used in the health sector to make or support decisions about individuals, groups and populations. Contemporary validity theorists define validity not as a statistical property of the test but as the extent to which empirical evidence supports the interpretation of test scores for an intended use. However, validity testing theory and methodology are rarely evident in the PROM validation literature. Application of this theory and methodology would provide structure for comprehensive validation planning to support improved PROM development and sound arguments for the validity of PROM score interpretation and use in each new context.ObjectiveThis paper proposes the application of contemporary validity theory and methodology to PROM validity testing.Illustrative exampleThe validity testing principles will be applied to a hypothetical case study with a focus on the interpretation and use of scores from a translated PROM that measures health literacy (the Health Literacy Questionnaire or HLQ).DiscussionAlthough robust psychometric properties of a PROM are a pre-condition to its use, a PROM’s validity lies in the sound argument that a network of empirical evidence supports the intended interpretation and use of PROM scores for decision making in a particular context. The health sector is yet to apply contemporary theory and methodology to PROM development and validation. The theoretical and methodological processes in this paper are offered as an advancement of the theory and practice of PROM validity testing in the health sector.

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Section: Discussionmentioning

confidence: 99%

Application of validity theory and methodology to patient-reported outcome measures (PROMs): building an argument for validity

2018

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“…Outcomes consist in the genetic-specific psychosocial problems that were assessed at T1 and T2 using the 26-item ‘Psychosocial Aspects of Hereditary Cancer’ (PAHC) questionnaire31 translated according to standard guidelines41 and comprehensively assessed for psychometric performance (Brédart et al , The ‘Psychosocial Aspects in Hereditary Cancer’ questionnaire in women attending BC genetic clinics: reliability, validity, responsiveness and interpretability across French, German and Spanish versions. Under review).…”

Section: Methodsmentioning

confidence: 99%

Psychosocial problems in women attending French, German and Spanish genetics clinics before and after targeted or multigene testing results: an observational prospective study

et al. 2019

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Objectives and settingAdvances in multigene panel testing for cancer susceptibility has increased the complexity of counselling, requiring particular attention to counselees’ psychosocial needs. Changes in psychosocial problems before and after genetic testing were prospectively compared between genetic test results in women tested for breast or ovarian cancer genetic susceptibility in French, German and Spanish clinics.Participants and measuresAmong 752 counselees consecutively approached, 646 (86%) were assessed after the initial genetic consultation (T1), including 510 (68%) affected with breast cancer, of which 460 (61%) were assessed again after receiving the test result (T2), using questionnaires addressing genetic-specific psychosocial problems (Psychosocial Aspects of Hereditary Cancer (PAHC)-six scales). Sociodemographic and clinical data were also collected.ResultsSeventy-nine (17.2%), 19 (4.1%), 259 (56.3%), 44 (9.6%) and 59 (12.8%) women received aBRCA1/2, another high/moderate-risk pathogenic variant (PV), negative uninformative, true negative (TN) or variant of uncertain significance result (VUS), respectively. On multiple regression analyses, compared with women receiving another result, those with a VUS decreased more in psychosocial problems related to hereditary predisposition (eg,coping with the test result) (ß=−0.11, p<0.05) and familial/social issues (eg,risk communication) (ß=−0.13, p<0.05), almost independently from their problems before testing. Women with a PV presented no change in hereditary predisposition problems and, so as women with a TN result, a non-significant increase in familial/social issues. Other PAHC scales (ie, emotions, familial cancer, personal cancer and children-related issues) were not affected by genetic testing.ConclusionsIn women tested for breast or ovarian cancer genetic risk in European genetics clinics, psychosocial problems were mostly unaffected by genetic testing. Apart from women receiving a VUS result, those with another test result presented unchanged needs in counselling in particular about hereditary predisposition and familial/social issues.

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“…There is evidence for methodological inconsistency between studies. For example, while the CCA of the EORTC QLQ-C30 followed the standard EORTC translation procedure (Koller et al [ 36 ], updated by Kulis et al [ 41 ]), the adaptation approach of the EORTC QLQ-C15-PAL (reported by Nunes et al) differed from the EORTC QoL Group recommendations [ 25 ]. The quality of the CCA can be improved through a careful selection of forward translators, a synthesis stage, an expert committee composed of health professionals, translators and possibly patients’ representatives with clear description of their roles, piloting the tool with an ideal sample size (30–40 subjects [ 16 ]) and close involvement of developers from the original tool.…”

Section: Discussionmentioning

confidence: 99%

Cross-cultural adaptation and measurement properties of generic and cancer-related patient-reported outcome measures (PROMs) for use with cancer patients in Brazil: a systematic review

2017

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PurposeThis systematic review (1) identifies the current generic and cancer-related patient-reported outcome measures (PROMs) that have been cross-culturally adapted to Brazilian Portuguese and applied to cancer patients and (2) critically evaluates their cross-cultural adaptation (CCA) and measurement properties.MethodsSeven databases were searched for articles regarding the translation and evaluation of measurement properties of generic and cancer-related PROMs cross-culturally adapted to Brazilian Portuguese that are applied in adult (≥18 years old) cancer patients. The methodological quality of included studies was assessed using the COSMIN checklist.ResultsThe bibliographic search retrieved 1674 hits, of which seven studies analysing eight instruments were included in this review. Data on the interpretability of scores were poorly reported. Overall, the quality of the CCA process was inconsistent throughout the studies. None of the included studies performed a cross-cultural validation. The evidence concerning the quality of measurement properties is limited by poor or fair methodological quality. Moreover, limited information regarding measurement properties was provided within the included papers.ConclusionsThis review aids the selection process of Brazilian Portuguese PROMs for use in cancer patients. After acknowledging the methodological caveats and strengths of each tool, our opinion is that for quality of life and symptoms assessment the adapted FACT-G version and the ESAS could be recommended, respectively. Future research should rely on the already accepted standards of CCA and validation studies.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-017-1703-5) contains supplementary material, which is available to authorized users.

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Pcn134 Dealing With Culturally Sensitive Questions in the Course of Translating Eortc Quality-of-Life Group Questionnaires

Cited by 41 publications

References 0 publications

Application of validity theory and methodology to patient-reported outcome measures (PROMs): building an argument for validity

Application of validity theory and methodology to patient-reported outcome measures (PROMs): building an argument for validity

Psychosocial problems in women attending French, German and Spanish genetics clinics before and after targeted or multigene testing results: an observational prospective study

Cross-cultural adaptation and measurement properties of generic and cancer-related patient-reported outcome measures (PROMs) for use with cancer patients in Brazil: a systematic review

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