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Developing a descriptive system for a new preference-based measure of health-related quality of life for children

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The use of preference-based measures (PBMs) of health-related quality of life (HRQoL) is increasing in health care resource allocation decisions. Whilst there are measures widely used for this purpose in adults, research in the paediatric field is more limited. This paper reports on how the descriptive system for a new paediatric generic PBM of HRQoL was developed from dimensions identified in previous research.


Existing scales from the paediatric literature were reviewed for suitability, and scales were also developed empirically, based on qualitative interview data from children, by taking adverbial phrases and confirming the ordinality by a ranking exercise with children. The resulting scales were applied to the dimensions from the previous research.


No suitable scales were found in the paediatric literature, so the empirically derived scales were used resulting in seven different types. Children were successfully able to rank these to determine the ordinality, and these types were applied to the dimensions.


This work has empirically developed a descriptive system for the dimensions of HRQoL identified in previous research. Further research is needed to test the descriptive system on a paediatric population and reduce the number of dimensions to be amenable to health state valuation.

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  1. NICE (National Institute for Clinical Excellence). (April 2004). Guide to the methods of technology appraisal.

  2. McCabe, C. (May 2003). Estimating preference weights for a paediatric health state classification (HUI2) and a comparison of methods. Ph.D.Thesis. The University of Sheffield.

  3. Stevens, K. J. (2008). Working with children to develop dimensions for a preference based generic paediatric health related quality of life measure. Health Economics and Decision Science Discussion Paper 08/04. Available from Accessed 14/08/2008.

  4. Streiner, D. L., Norman, G. R., & Health Measurement Scales. (1995). A practical guide to their development and use (2nd ed.). Oxford: Oxford University Press.

    Google Scholar 

  5. Tennant, A., McKenna, S. P., & Hagell, P. (2004). Application of Rasch analysis in the development and application of quality of life instruments. Value in Health, 7(Supplement 1), S22–S26.

    Article  PubMed  Google Scholar 

  6. Brazier, J. E., Ratcliffe, J., Salomon, J., & Tsuchiya, A. (2007). Measuring and valuing health benefits for economic evaluation. Oxford: Oxford University Press.

    Google Scholar 

  7. Kind, P., Brooks, R., & Rabin, R. (Eds.). (2005). EQ-5D concepts and methods, a developmental history. Chapter 3. Berlin: Springer.

    Google Scholar 

  8. Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5(4), 1–156.

    PubMed  CAS  Google Scholar 

  9. Apajasalo, M., Sintonen, H., Holmberg, C., et al. (1996). Quality of life in early adolescence: A sixteen-dimensional health-related measure (16D). Quality of Life Research, 5, 205–211.

    Article  PubMed  CAS  Google Scholar 

  10. Health Utilities Index. Accessed 14/07/2008.

  11. Miller, G. A. (1956). The magical number seven, plus or minus two: Some limits on our capacity for processing information. Psychological Review, 63(2), 81–97.

    Article  PubMed  CAS  Google Scholar 

  12. Riley, A. W., Forrest, C. B., Rebok, G. W., et al. (2004). The child report form of the CHIP-child edition: reliability and validity. Medical Care, 42(3), 221–231.

    Article  PubMed  Google Scholar 

  13. Matza, L. S., Swensen, A. R., Flood, E. M., et al. (2004). Assessment of health related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7(1), 79–92.

    Article  PubMed  Google Scholar 

  14. Brazier, J. E., Deverill, M., Green, C., et al. (1999). A review of the use of health status measures in economic evaluation. Health Technology Assessment, 3(9), 1–164.

    Google Scholar 

  15. Keller, S. D., Ware, J. E., Gandek, B., et al. (1998). Testing the equivalence of translations of widely used response choice labels: Results from the IQOLA project. Journal of Clinical Epidemiology, 51(11), 933–944.

    Article  PubMed  CAS  Google Scholar 

  16. Bland, M., & Peacock, J. (2001). Methods based on rank order. In statistical questions in evidence-based medicine. Oxford: Oxford Medical Publications, Oxford University Press.

    Google Scholar 

  17. Argyrous, G. (2006). Rank-order tests for two or more samples. In statistics for research with a guide to SPSS (2nd ed.). London: Sage.

    Google Scholar 

  18. Hinton, P. R. (1995). Statistics explained. A guide for social science students. London: Routledge.

    Google Scholar 

  19. Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174.

    Article  PubMed  CAS  Google Scholar 

  20. MAPI research trust. Patient-Reported Outcome and Quality of Life Instruments Database. Available from: Accessed 13/04/2006.

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This research was funded as part of an MRC Special Training Fellowship in Health Services and Health of the Public Research. Thanks go to The Children and Young People’s Directorate at Sheffield City Council, the staff of Firs Hill Community Primary School and Hunters Bar Junior School, to the parents who gave their consent, to the staff at the schools and to all the children who took part in the research.

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Correspondence to Katherine Stevens.

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Stevens, K. Developing a descriptive system for a new preference-based measure of health-related quality of life for children. Qual Life Res 18, 1105–1113 (2009).

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