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The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review

Clarke, S. and Eiser, C. (2004) The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health and Quality of Life Outcomes, 2 (66). ISSN 1477-7525

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Abstract

Background

The goal of much care in chronic childhood illness is to improve quality of life (QOL). However, surveys suggest QOL measures are not routinely included. In addition, there is little consensus about the quality of many QOL measures.

Objectives

To determine the extent to which quality of life (QOL) measures are used in paediatric clinical trials and evaluate the quality of measures used.

Design

Systematic literature review.

Review Methods

Included paediatric trials published in English between 1994 and 2003 involving children and adolescents up to the age of 20 years, and use of a standardised QOL measure. Data Sources included MEDLINE, CINAHL, EMB Reviews, AMED, BNI, PSYCHINFO, the Cochrane library, Internet, and reference lists from review articles.

Results

We identified 18 trials including assessment of QOL (4 Asthma, 4 Rhinitis, 2 Dermatitis, and single studies of Eczema, Cystic fibrosis, Otis media, Amblyopia, Diabetes, Obesity associated with a brain tumour, Idiopathic short stature, and Congenital agranulocytosis). In three trials, parents rated their own QOL but not their child's. Fourteen different QOL measures were used but only two fulfilled our minimal defined criteria for quality.

Conclusions

This review confirms previous reports of limited use of QOL measures in paediatric clinical trials. Our review provides information about availability and quality of measures which will be of especial value to trial developers.

Item Type: Article
Copyright, Publisher and Additional Information: © 2004 Clarke and Eiser; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Institution: The University of Sheffield
Academic Units: The University of Sheffield > Faculty of Science (Sheffield) > Department of Psychology (Sheffield)
Depositing User: Repository Officer
Date Deposited: 22 Mar 2006
Last Modified: 05 Jun 2014 01:56
Published Version: http://www.hqlo.com/content/2/1/66
Status: Published
Refereed: Yes
Identification Number: 10.1186/1477-7525-2-66
URI: http://eprints.whiterose.ac.uk/id/eprint/1095

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