Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research
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Review
Measuring the quality of a childhood cancer care delivery system: quality indicator development.
A set of indicators to assess the quality of a childhood cancer system has not been identified in any jurisdiction internationally, despite the movement toward increased accountability and provision of high-quality care with limited health care resources. This study was conducted to develop a set of quality indicators (QIs) of a childhood cancer control and health care delivery system in Ontario, Canada. ⋯ The subset of 33 QIs developed on the basis of a systematic literature review and consensus provides the basis for the selection of a set of QIs for ongoing, standardized monitoring of various dimensions of quality in a childhood cancer system.
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Patient-reported outcome (PRO) instruments for children and adolescents are often included in clinical trials with the intention of collecting data to support claims in a medical product label. ⋯ Additional research is needed to provide methodological guidance for future studies, especially for studies involving young children and parents' observational reports. As PRO data are increasingly used to support pediatric labeling claims, there will be more information regarding the standards by which these instruments will be judged. The use of PRO instruments in clinical trials and regulatory submissions will help ensure that children's experience of disease and treatment are accurately represented and considered in regulatory decisions.