Adapting Patient‐Reported Outcome Measures for Use in New Languages and Cultures

McKenna, Stephen P.; Wilburn, Jeanette; Thorsen, Hanne; Brodersen, John

doi:10.1002/9781118574454.ch16

Cited by 15 publications

(18 citation statements)

References 19 publications

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“…Our findings are consistent with others that have highlighted the intricacies in designing a multi-lingual, culturally competent survey that can be applied in a culturally diverse setting across different treatment contexts [16,35]. Overall, our results demonstrate that this unmet needs survey is somewhat invariant with respect to these factors.…”

Section: Discussionsupporting

confidence: 81%

“…It may be that the Chinese-language responders actually had greater support of this kind from their communities than did the other groups. However, given this DIF was language specific, an alternative explanation is that the Chinese translation had a somewhat different interpretation to the other language versions, despite rigorous forward and backward translation, as translation issues have commonly been found to be the source of DIF in patientreported outcome assessments [35,36]. Future qualitative research should investigate source(s) of bias in these items for Chinese language responders.…”

Section: Discussionmentioning

confidence: 99%

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Assessing the invariance of a culturally competent multi-lingual unmet needs survey for immigrant and Australian-born cancer patients: a Rasch analysis

et al. 2014

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Purpose: To assess the invariance of a culturally competent multi-lingual unmet needs survey.Methods: A cross-sectional study was conducted among immigrants of Arabic, Chinese and Greekspeaking backgrounds, and Anglo-Australian-born controls, recruited through Cancer Registries (n = 591) and oncology clinics (n = 900). The survey included four subscales, with newly developed items addressing unmet need in culturally competent health information and patient support (CCHIPS), and items adapted from existing questionnaires addressing physical and daily living (PDL), sexuality (SEX) and survivorship (SURV) unmet need. The measure was translated into Arabic, Chinese and Greek. Rasch analysis was carried out on the four domains.Results: While many items were mistargeted to less prevalent areas of unmet need, causing substantial floor effects in person estimates, reliability indices were all acceptable. The CCHIPS domain showed differential item functioning (DIF) for cultural background and language and the PDL domain showed DIF for treatment phase and gender. The results for SEX and SURV domains were limited by floor effects and missing responses. All domains showed adequate fit to the model after DIF was resolved and a small number of items were deleted.Conclusions: The study highlights the intricacies in designing a culturally competent survey that can be applied to culturally and linguistically diverse groups across different treatment contexts. Overall, the results demonstrate that this survey is somewhat invariant with respect to these factors. Future refinements are suggested to enhance the survey's cultural competence and general validity.Identification of the unmet supportive care needs of cancer patients and survivors informs appropriate resource allocation and optimisation of service provision relative to actual needs [1][2][3][4].To date, such assessment has focused on non-immigrant cancer patients. Immigrant groups diagnosed with cancer are worse off than comparable non-immigrant groups in terms of survival [5], psychological morbidity and quality of life [6]. These disparities may arise from a lack of familiarity with the healthcare system, lack of culturally appropriate information, communication difficulties for culturally and linguistically diverse (CALD) patients, and cultural attitudes and beliefs toward cancer [7][8][9]. Thus there is an imperative to develop and validate a questionnaire to assess unmet needs in immigrant cancer patients and survivors [2,10,11].Existing unmet needs questionnaires address themes that may be common to immigrant and nonimmigrant cancer survivors, including needs related to the health system and information, physical and daily living, patient care and support, sexuality, and survivorship [1,4,7]. However, immigrants may have unique needs as a result of the issues outlined above [7]. Furthermore, the interpretation of items and scores must remain invariant across diverse languages and cultural groups to enable valid comparisons.Rasch analysis provides a robust me...

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Section: Discussionsupporting

confidence: 81%

Section: Discussionmentioning

confidence: 99%

Assessing the invariance of a culturally competent multi-lingual unmet needs survey for immigrant and Australian-born cancer patients: a Rasch analysis

et al. 2014

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“…In particular, verbatim comments (the exact words) from the participants can be used to explore and define new item content. [23][24][25] The interviewer should aim to get as many descriptive verbatim responses as possible in order to capture possible new meaningful item themes from the target group, which in fact is a primary objective of all interviews. 9,10, 23,24 It is also important to include a variety of target patients (eg, patients prior to operative treatment and at varying postoperative intervals, patients from varying socioeconomic communities, or patients with varying stages of disease), as a too homogenous group of patients might result in insufficient coverage.…”

Section: Step 3: Content Validationconfirming Item Relevance and Coverage In Promsmentioning

confidence: 99%

How to develop a condition‐specific PROM

Comins

Brodersen

Siersma

et al. 2020

Scandinavian Med Sci Sports

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Developing new patient-reported outcome measures (PROMs) for application in clinical studies can be necessary if an adequate PROM does not exist. For adequate measurement, it is essential that the PROM has face validity (ie, is perceived to be relevant by clinicians and researchers) and has high content validity (ie, content relevance and content coverage for the targeted patient group). The steps needed to create PROMs that possess face and content validity for a specific condition are described in this paper. Face validity is achieved by item identification and generation through literature review. Content validity is confirmed through repetitive cognitive interviews of patients from the targeted patient group in order to generate a consensus-based pilot-version of the new PROM. This qualitative process ensures that items are appropriately worded, understandable, and minimizes doubts about how items should be answered. A practical example of this process is presented, which shows the development of the Knee Numeric-Entity Evaluation Score (KNEES-ACL), a condition-specific PROM for patients with deficiency of the anterior cruciate ligament (ACL).

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“…The COPM encompasses the occupational performance items and help improve measurements through the recommendations of a panel of experts [27]. Thus, in the translation process into Danish, the aspect of content validity was given special attention and examined as recommended by the content validity index (CVI) and debriefing interviews [30,31]. The study revealed issues with the content validity of the COPM-DK [25].…”

Section: Introductionmentioning

confidence: 99%

Looking into the Content of the Canadian Occupational Performance Measure (COPM): A Danish Cross-Sectional Study

Larsen

Wehberg

Christensen

2020

Occupational Therapy International

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Purpose. To examine the content validity of the Danish version of the Canadian Occupational Performance Measure (COPM-DK). Materials and Methods. This cross-sectional study was performed in a hospital and a community rehabilitation centre. The content validity of the COPM was assessed by relating the clients’ prioritized occupational performance issues (OPIs) to the conceptual model of the Canadian Model of Occupational Performance and Engagement (CMOP-E) and the levels of the Taxonomic Code of Occupational Performance (TCOP). Six occupational therapy lecturers participated in classifying the OPIs using the TCOP. Results. A total of 112 clients from a regional and community-based rehabilitation participated. The 56% regional participants came from a hospital’s hand and knee surgery department. The remaining 44% participants came from a community-based rehabilitation centre with in- and outpatient departments. There were 44% males, with a mean age of 65.2 years. They prioritized 495 OPIs, of which 40% concerned self-care, 32% productivity, and 28% leisure. The prioritized OPIs were divided into a total of 224 different OPIs. There were significant differences in which areas were prioritized in the various population groups. Of the OPIs, 64.3% could be classified into the TCOP levels of occupation and activity, i.e., 1/3 of the OPIs were related to tasks and actions, and thus beyond the scope of the COPM. The interrater agreement of the OPI classification was only fair (kappa 0.3). Conclusion. The content validity of the COPM seems to depend on how and with which clients it is administered. Caution must be taken to secure OPIs on the higher levels of the TCOP, while maintaining the clients’ right to nominate OPI preferences. Therefore, an introductory course and on-going support are recommendable. Bearing this in mind, the COPM seems useful to identify individual clients’ prioritized OPIs in a Danish context.

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Adapting Patient‐Reported Outcome Measures for Use in New Languages and Cultures

Cited by 15 publications

References 19 publications

Assessing the invariance of a culturally competent multi-lingual unmet needs survey for immigrant and Australian-born cancer patients: a Rasch analysis

Assessing the invariance of a culturally competent multi-lingual unmet needs survey for immigrant and Australian-born cancer patients: a Rasch analysis

How to develop a condition‐specific PROM

Looking into the Content of the Canadian Occupational Performance Measure (COPM): A Danish Cross-Sectional Study

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