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Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures

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Abstract

Objective

To identify and appraise all published quality of life (QOL) measures developed for use with children with cancer and childhood cancer survivors.

Methods

MEDLINE, CINAHL, EMBASE, PsycINFO, CancerLit, and Sociological Abstracts were searched from the inception of each database to 15 June 2009. Included articles were ones that described the development and/or psychometric evaluation of a QOL measure developed for use with children with cancer or childhood cancer survivors. Articles were appraised for adherence to internationally recommended guidelines for item generation, item reduction, and psychometric evaluation.

Results

Thirteen QOL questionnaires were identified by our search. Eleven measures are applicable to measuring QOL in children with any type of cancer, and two are specific to children with brain cancer. Four measures can be used to measure QOL in children undergoing cancer treatment, six can be used with children on or off treatment, and three are specific to childhood cancer survivors. While all measures underwent some degree of formal development and validation, item generation often did not involve children with cancer or their parents, and a number of measures did not describe or utilize recommended methods for item reduction and psychometric evaluation.

Conclusions

Most of the measures identified in this review were designed to measure QOL concerns of children with any type of cancer and at any time, during treatment or survivorship. Our findings can help researchers and clinicians identify scientifically sound measures.

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Author information

Authors and Affiliations

  1. Department of Pediatrics, McMaster University, 3A, 1200 Main Street W., Hamilton, ON, L8N 3Z5, Canada

    Anne F. Klassen

  2. Department of Pediatrics, McMaster University, IAHS Bldg, Room 408, 1400 Main St. W., Hamilton, ON, L8S 1C7, Canada

    Sonya J. Strohm

  3. Psychosocial Department, Pediatrics, Academic Medical Centre G8 224, University Hospital of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands

    Heleen Maurice-Stam & Martha A. Grootenhuis

Authors
  1. Anne F. Klassen
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  2. Sonya J. Strohm
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  3. Heleen Maurice-Stam
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  4. Martha A. Grootenhuis
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Corresponding author

Correspondence to Anne F. Klassen.

Additional information

This study was funded by a grant from the Canadian Cancer Society. Anne Klassen is a recipient of Canadian Institute of Health Research career award. We acknowledge the contribution of Maureen Rice for her help with the literature search.

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Klassen, A.F., Strohm, S.J., Maurice-Stam, H. et al. Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures. Support Care Cancer 18, 1207–1217 (2010). https://doi.org/10.1007/s00520-009-0751-y

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