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

      review-article
      Author(s): 1 , , 1
      Publication date (Electronic):
      Journal: Health and Quality of Life Outcomes
      Publisher: BioMed Central

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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.

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          Most cited references43

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          Improving the quality of reporting of randomized controlled trials. The CONSORT statement.

          C. Begg, M. Cho, S. Eastwood … (1996)
          Article 0 comments Cited 408 times – based on 0 reviews     Review now
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            Can parents rate their child's health-related quality of life? Results of a systematic review.

            C Eiser, R. Morse (2001)
            A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions: is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.
            Article 0 comments Cited 186 times – based on 0 reviews     Review now
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              The Children's Dermatology Life Quality Index (CDLQI): initial validation and practical use.

              A. Finlay, Cathryn Lewis (1995)
              Skin disease can cause severe disability and handicap in children. Measurement of the impact of skin disease on the quality of life is required to aid clinical decision-making, for clinical research, for audit of paediatric dermatology services, and for political reasons, to aid arguments for more resources for the care of children with skin disease. Adult measures are inappropriate, as the lives of children differ markedly from those of adults. The purpose of this study was to create and initially validate a simple practical questionnaire for use in children. One hundred and sixty-nine children, aged 3-16 years, attending a paediatric dermatology clinic, wrote down, with the help of their parents, all the ways in which their skin disease affected their lives. One hundred and eleven different aspects were identified; 10 questions were composed to cover these aspects, using a structure similar to the Adult Dermatology Life Quality Index. This draft questionnaire was piloted on two series, totalling 40 children, and minor alterations were made to improve clarity. The Children's Dermatology Life Quality Index (CDLQI) questionnaire (maximum score 30) was then given to a further 233 dermatology paediatric out-patients (CDLQI mean = 5.1, SD = 4.9), 47 normal controls (mean 0.4, 0.7) and 55 control patients attending a general paediatric clinic (mean 0.7, 2.5). The CDLQI scores for eczema (mean = 7.7, 5.6, n = 47), psoriasis (5.4, 5.0, n = 25) and acne (5.7, 4.4, n = 40), were all highly significantly greater than for moles and naevi (2.3, 2.9, n = 29). The highest mean score was that for scabies (mean = 9.5, 10.5, n = 6).(ABSTRACT TRUNCATED AT 250 WORDS)
              Article 0 comments Cited 81 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): Health Qual Life Outcomes
                Title: Health and Quality of Life Outcomes
                Publisher: BioMed Central (London )
                ISSN (Electronic): 1477-7525
                Publication date Collection: 2004
                Publication date (Electronic): 22 November 2004
                Volume: 2
                Page: 66
                Affiliations
                [1 ]Department of Psychology, University of Sheffield, Western Bank, Sheffield, UK
                Article
                Publisher ID: 1477-7525-2-66
                DOI: 10.1186/1477-7525-2-66
                PMC ID: 534785
                PubMed ID: 15555077
                SO-VID: 5200057b-4d98-473f-9068-78307f7c823e
                Copyright © Copyright © 2004 Clarke and Eiser; licensee BioMed Central Ltd.
                License:

                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.

                History
                Date received : 28 October 2004
                Date accepted : 22 November 2004
                Categories
                Subject: Review

                ScienceOpen disciplines: Health & Social care
                Data availability:
                ScienceOpen disciplines: Health & Social care

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