Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
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Quality of life is recognized as an important outcome of health services. Ideally, the child's perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities. ⋯ In children with CP, parents' ratings of their children's quality of life are generally comparable as a group to their child's self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child's own perspective should be considered whenever feasible.
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The measurement of health-related quality of life (HRQOL) in pediatric medicine and health services research has grown significantly over the past decade. The paradigm shift toward patient-reported outcomes (PROs) has provided the opportunity to emphasize the value and critical need for pediatric patient self-report. In order for changes in HRQOL/PRO outcomes to be meaningful over time, it is essential to demonstrate longitudinal factorial invariance. This study examined the longitudinal factor structure of the PedsQL 4.0 Generic Core Scales over a one-year period for child self-report ages 5-17 in 2,887 children from a statewide evaluation of the California State Children's Health Insurance Program (SCHIP) utilizing a structural equation modeling framework. ⋯ The findings support an equivalent factor structure on the PedsQL 4.0 Generic Core Scales over time. Based on these data, it can be concluded that over a one-year period children in our study interpreted items on the PedsQL 4.0 Generic Core Scales in a similar manner.
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The umbrella term Patient Reported Outcomes (PRO) has been successfully proposed for instruments measuring perceived health outcomes, but its relationship to current conceptual models remains to be established. Our aim was to develop a classification system for PRO measures based on a valid conceptual model. ⋯ This classification system of PRO measures, based on a valid integrated conceptual model, should allow the classification of most currently used instruments and may facilitate a more adequate selection and application of these instruments.