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A review of measures of quality of life for children with chronic illness.

Author information

Affiliations

  • 1. CRC Child and Family Research Group, Department of Psychology, University of Sheffield, Sheffield S10 2TP, UK.
      Authors
    • Eiser C 1
    (1 author)

Archives of Disease in Childhood, 01 Mar 2001, 84(3):205-211
https://doi.org/10.1136/adc.84.3.205 PMID: 11207164 PMCID: PMC1718699

ReviewFree full text in Europe PMC

Abstract 

Aims

To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures.

Methods

Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria.

Results

Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status.

Conclusions

We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.

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Logo of archdischLink to Publisher's site
Arch Dis Child. 2001 Mar; 84(3): 205–211.
PMCID: PMC1718699
PMID: 11207164

A review of measures of quality of life for children with chronic illness

C Eiser and R Morse
Author information Copyright and License information Disclaimer

Abstract

AIMS—To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures.
METHODS—Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria.
RESULTS—Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status.
CONCLUSIONS—We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.

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Selected References

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