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

被引:154
作者
Clarke S.-A. [1 ]
Eiser C. [1 ]
机构
[1] Department of Psychology, University of Sheffield, Sheffield, Western Bank
关键词
Idiopathic Short Stature; Disease Specific Measure; Paediatric Trial; Paediatric Clinical Trial; British Nurse Index;
D O I
10.1186/1477-7525-2-66
中图分类号
学科分类号
摘要
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. © 2004 Clarke and Eiser; licensee BioMed Central Ltd.
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页数:5
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共 48 条
[1]  
Newacheck P.W., Strickland B., Shonkoff J.P., Perrin J.M., McPherson M., McManus M., Lauver C., Fox H., Arango P., An epidemiologic profile of children with special health care needs, Pediatrics, 102, pp. 117-123, (1998)
[2]  
Stiller C.A., Population based survival rates for childhood cancer in Britain, 1980-91, BMJ, 309, pp. 1612-1616, (1994)
[3]  
Jaffe A., Bush A., Cystic Fibrosis: Review of the decade, Monaldi Arch. Chest Dis., 56, pp. 240-247, (2001)
[4]  
Eiser C., Morse R., Quality of life measures in chronic diseases of childhood, Health Technol. Assess., 5, pp. 1-157, (2001)
[5]  
Chassany O., Sagnier P., Marquis P., Fullerton S., Aaronson N., Patient-reported outcomes: The examples of health-related quality of life - A European guidance document for the improved integration of health-related quality of life assessment in the drug regulatory process, Drug Inf. J., 36, pp. 209-238, (2002)
[6]  
Varni J.W., Burwinkle T.M., Health related quality of life measurement in pediatric clinical practice, Proceedings of Measuring Child Health. Critical Challenges in Developing and Applying Health Status and Outcome Measures, pp. 24-25, (2004)
[7]  
Wright S., Reporting on quality of life in RCT's, BMJ, 318, (1999)
[8]  
Bradlyn A., Harris C., Spieth L., Quality of life assessment in pediatric oncology: A retrospective review of phase III reports, Soc. Sci. Med., 41, pp. 1463-1465, (1995)
[9]  
Sanders C., Egger M., Dononvan J., Tallon D., Frankel S., Reporting on quality of life in randomized controlled trials: Bibliographic study, BMJ, 317, pp. 1191-1194, (1998)
[10]  
Getting the right start: National Service Framework for Children - Emerging Findings, (2003)