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Significant increases in survival have been reported for a wide range of chronic diseases of childhood. These improvements have generally been achieved through the use of increasingly aggressive treatment protocols, prompting some to question the relationship between quantity and quality of survival. Frequent and lengthy hospitalisations, painful treatments, and lack of certainty about the future may all compromise the quality of life of child and family. Current ability to treat children with chronic disease, coupled with the inability to offer absolute cure, raises the issue of the quality of life of these children. Many clinicians and adults are prepared to accept that some compromise to quality of life is inevitable during the early stages of treatment, but feel more uncomfortable if this continues beyond the initial diagnosis. This applies especially to children with cancer, since quality of life is inevitably compromised during treatment. It is now apparent that statistics based on survival may not accurately reflect the degree to which quality of life is compromised in the longer term, given the incidence of both physical and psychological difficulties reported by some survivors.1 The birth of a premature or low birthweight infant has immediate consequences for family quality of life, but again these may well extend into middle childhood and probably beyond.2 Children with asthma or diabetes may always need medication, but at the same time we hope that this will not result in any significant compromise to quality of life.3
Key messages
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Decisions about alternative treatments need to take into account quality of life as well as survival
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Quality of life measures are potentially useful in evaluating alternative treatments and interventions and identifying children in special need
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Children’s views about quality of life change with age
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Selection of a generic or disease specific measure must be made …