Abstract
BackgroundThe 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.ObjectivesTo determine the extent to which quality of life (QOL) measures are used in paediatric clinical trials and evaluate the quality of measures used.DesignSystematic literature review.Review MethodsIncluded 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.ResultsWe 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.ConclusionsThis 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.
Highlights
Chronic disease affects approximately 18% of children [1]
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 quality of life (QOL) measure
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)
Summary
Chronic disease affects approximately 18% of children [1]. Many diseases require daily self-management and restrict children's physical and social activities. Questions are increasingly raised about the quality of life (QOL) of children with chronic disease. Efforts to measure child QOL have proved complex but a number of generic and disease-specific measures have been reported [4]. Generic measures are designed to assess and compare health status in patients with different diseases and may provide valuable information for compar-. The goal of much care in chronic childhood illness is to improve quality of life (QOL). Surveys suggest QOL measures are not routinely included. There is little consensus about the quality of many QOL measures
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