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Developing Health-Related Quality-of-Life Instruments for Use in Asia

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Abstract

About half of the world’s population live in Asia. Mandarin (the official language of China), Hindi and Japanese are among the ten languages spoken by the largest number of primary speakers. The numbers of Tamil and Malay speakers are expected to grow rapidly in the next few decades. Most health-related quality-of-life (HR-QOL) instruments currently used in Asia are translations and/or adaptations of instruments developed in North America and Western Europe. We illustrate and discuss several major issues in the development of HR-QOL instruments for use in Asia.

We have seen insufficient quality in translation and semantic equivalence, which is not a uniquely Asian problem. This problem will be alleviated by putting recently proposed guidelines for translation and adaptation of patient-reported outcomes into practice and formally conducting equivalence studies. For copyright or other reasons it is rare to see major adaptations, such as exclusion of a domain in the original instrument or inclusion of a new domain, made to existing instruments. Evidence is limited and mixed as to whether there are differences in the concepts of HR-QOL between Asian and North American/Western European cultures that are important enough to justify such major adaptations, or the development of indigenous instruments, as opposed to the translation/adaptation of existing instruments. There are substantial cultural differences concerning what questions are appropriate to ask and answer.

Many HR-QOL instruments are designed for self-completion. This mode of administration is often not feasible in Asia because of low literacy rates and the presence of many different regional languages. Alternative administration methods and analytic strategies that allow for pooling data collected by different modes are needed.

The availability of HR-QOL instruments in various Asian countries seems to reflect the status of economic development of the countries rather than their disease burden. For instance, many important HR-QOL instruments are available in Japanese but not in Hindi or Tamil.

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Notes

  1. Chinese is written in either the traditional or the simplified form; some people understand both. Computer software is available to convert one into the other.

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Acknowledgements

The authors declare that they have no potential conflicts of interest that are directly relevant to the contents of this article. No sources of funding were used to assist in the preparation of this article.

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Authors and Affiliations

  1. MRC Tropical Epidemiology Group, Infectious Disease Epidemiology Unit, London School of Hygiene and Tropical Medicine, Room 305a, IDEU, ITD, Keppel Street, London, WC1E 7HT, UK

    Yin Bun Cheung

  2. Department of Rheumatology and Immunology, Singapore General Hospital, Singapore

    Julian Thumboo

  3. Department of Medicine, National University of Singapore, Singapore

    Julian Thumboo

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  1. Yin Bun Cheung
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  2. Julian Thumboo
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Correspondence to Yin Bun Cheung.

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Cheung, Y.B., Thumboo, J. Developing Health-Related Quality-of-Life Instruments for Use in Asia. Pharmacoeconomics 24, 643–650 (2006). https://doi.org/10.2165/00019053-200624070-00003

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