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Enabling cross-cultural data pooling in trials: linguistic validation of head and neck cancer measures for Indian patients

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Abstract

Background

Head and neck cancers (HNC) and their treatments cause dysfunction and distress. Ongoing psychological assessment using disease-specific patient-reported measures may optimize clinical decision-making, facilitate interventions to reduce psychosocial burden. As most such measures are developed in English, non-English speaking patients are disadvantaged. This study translated HNC-specific measures (Body Image Scale, Patient Concerns Inventory, Zung’s Self-Rating Anxiety and Depression Scales and Patient Health Questionnaire-9) into three Indian languages (Hindi, Tamil and Telugu) and linguistically validated them.

Methods

Translation followed established guidelines on translation and linguistic validation of measures. Process involved two independent forward translations, reconciliation, two independent backward translations by bilingual experts, and cognitive debriefing interviews with nine healthcare professionals (HCPs) and 29 HNC patients. Translated versions were compared with the original versions for semantic, cultural and conceptual equivalence.

Results

Overall, 17 Hindi items, 19 Tamil items and 13 Telugu items were identified to have semantic, cultural and/or conceptual issues. These were resolved to achieve equivalence with the original measures. Interviews with HCPs indicated that equivalent terms for words such as anxiety, panicky, sexuality, and self-conscious might be difficult to understand. Interviews with patients indicated all items were understandable, easy, sensitive, unambiguous and relevant. Hence, no further revisions were made.

Conclusions

The translated Hindi, Tamil and Telugu versions of the Body image scale, Patient concerns inventory, Zung’s self-rating anxiety and depression scales and Patient health questionnaire-9 measures are conceptually and linguistically validated and equivalent with the original English versions. Psychometric validation of these measures with relevant patient populations is needed.

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Funding

This study was funded by University of Sydney’s Australia-India Development Fund grant.

Author information

Authors and Affiliations

  1. Centre for Medical Psychology and Evidence-based Decision-making, School of Psychology, Faculty of Science, University of Sydney, Sydney, NSW, Australia

    Chindhu Shunmugasundaram, Haryana M. Dhillon & Phyllis N. Butow

  2. Psycho-Oncology Cooperative Research Group, University of Sydney, Sydney, Australia

    Chindhu Shunmugasundaram, Haryana M. Dhillon & Phyllis N. Butow

  3. Radiation Oncology Network, Western Sydney Local Health District, Sydney, Australia

    Puma Sundaresan

  4. Sydney Medical School, University of Sydney, Sydney, Australia

    Puma Sundaresan

  5. Quality of Life Office, School of Psychology, Faculty of Science, University of Sydney, Sydney, Australia

    Claudia Rutherford

  6. Sydney Nursing School, Cancer Nursing Research Unit (CNRU), University of Sydney, Sydney, Australia

    Claudia Rutherford

Authors
  1. Chindhu Shunmugasundaram
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  2. Haryana M. Dhillon
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  3. Phyllis N. Butow
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  4. Puma Sundaresan
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  5. Claudia Rutherford
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Corresponding author

Correspondence to Chindhu Shunmugasundaram.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (University of Sydney Institutional Human research ethics committee (2019/202), Indian Institute of Technology Hyderabad Institutional Ethics Committee (May, 2019), Institutional Ethics Committee MNJ Institute of Oncology & Regional cancer centre (Regd No: ECR/227/Inst/AP/2013/RR-16) and Cancer Institute, WIA Institutional Scientific Advisory Committee and Institutional Ethics Committee) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed written and verbal consent from health professionals and head and neck cancer patients was obtained for this study.

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Shunmugasundaram, C., Dhillon, H.M., Butow, P.N. et al. Enabling cross-cultural data pooling in trials: linguistic validation of head and neck cancer measures for Indian patients. Qual Life Res 30, 2649–2661 (2021). https://doi.org/10.1007/s11136-021-02837-x

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  • DOI: https://doi.org/10.1007/s11136-021-02837-x

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