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Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance

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Abstract

Background

Although parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why parents and children report different levels of HRQOL.

Method

The sample consisted of 15 parent–child pairs. A think-aloud technique was used where parents and children were given a generic HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted to assess whether parents and children base their answer on different experiences or reasoning, have different response styles, or interpret the items differently.

Results

There was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer. Children tended to have different response styles to parents, where for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted the meaning of the items very similarly.

Discussion

This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.

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Abbreviations

HRQOL:

Health-related quality of life

QOL:

Quality of life

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Acknowledgements

We would like to extend our gratitude to the parents and children who were involved in the participation of this study, as well as Deakin University for funding the study. We would also like to acknowledge two anonymous reviewers for their helpful comments.

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Authors and Affiliations

  1. School of Health and Social Development, Faculty of Health, Medicine, Nursing and Behavioural Sciences, Deakin University, 221 Burwood Hwy, Burwood, Victoria, 3125, Australia

    Elise Davis, Caroline Nicolas, Elizabeth Waters, Kay Cook, Lisa Gibbs, Angela Gosch & Ulrike Ravens-Sieberer

  2. Munich University of Applied Sciences, Munich, Germany

    Angela Gosch

  3. Robert-Koch Institute, Berlin, Germany

    Ulrike Ravens-Sieberer

Authors
  1. Elise Davis
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  2. Caroline Nicolas
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  4. Kay Cook
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  5. Lisa Gibbs
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  6. Angela Gosch
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  7. Ulrike Ravens-Sieberer
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Correspondence to Elise Davis.

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Davis, E., Nicolas, C., Waters, E. et al. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res 16, 863–871 (2007). https://doi.org/10.1007/s11136-007-9187-3

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  • DOI: https://doi.org/10.1007/s11136-007-9187-3

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