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Title of Journal: Eur J Pediatr

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Abbravation: European Journal of Pediatrics

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Springer Berlin Heidelberg

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DOI

10.1007/s003350020012

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1432-1076

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Healthrelated quality of life and symptom reporti

Authors: Christine Eiser James W Varni
Publish Date: 2013/05/29
Volume: 172, Issue: 10, Pages: 1299-1304
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Abstract

Healthrelated quality of life HRQOL is increasingly seen as important to reflect the impact of an illness and its treatment on a patient from the patient’s perspective However there may be times when it is difficult to obtain this information directly from pediatric patients and parents are therefore used as substitutes Nevertheless an informant discrepancy between children and their parents increase the need to identify variables which contribute to the observed differences between children’s selfreports and parents’ proxyreports Discrepancies between child and parent reports have often been regarded as “methodological error” and have led to misconceived arguments about who is “right” The aims of this review are to provide an overview and update to help understand the relation between children’s selfreport of their symptoms and HRQOL and parents’ proxyreports the circumstances in which informant discrepancies might be expected and potential reasons for these discrepancies Discrepancies can be summarized in relation to characteristics of the child the adult and the HRQOL domain being measured We conclude that informant discrepancy is not simply an irritating measurement error but also has its clinical implications We argue that parents and children base their judgments of pediatric HRQOL on different information and as such comprehensive evaluation needs to take account of both perspectives This perspective has implications for the design of clinical trials and necessitates routine collection of data from both sources in clinical research and practiceNo honorarium grant or other form of payment was given to anyone to produce the manuscript Dr Varni holds the copyright and the trademark for the PedsQL™ and receives financial compensation from the Mapi Research Trust which is a nonprofit research institute that charges distribution fees to forprofit companies that use the Pediatric Quality of Life Inventory™

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