As survival rates in children with chronic health conditions have improved, clinicians have begun to recognize quality of life as an important health outcome. Investigators at Cincinnati Children’s are leaders in the field of quality-of-life measurement in children with heart disease. The measures we developed and utilize here not only include disease-specific measures, with greater clinical utility in assessing concerns that are particular to this patient population, but also include parent-proxy and child self-report measures. Both are essential to quality of life assessment, given the observed lack of significant agreement between proxy- and self-report cross-informant variance, demonstrated in multiple pediatric studies.
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being conducted at the Heart Institute.