Background: Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data.

Background: Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While pediatric patient selfreport should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, and reliable and valid parent proxy-report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL™ Database SM were utilized to test the reliability and validity of parent proxyreport at the individual age subgroup level for ages 2-16 years as recommended by recent FDA guidelines.

Background: The last decade has evidenced a dramatic increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures in an effort to improve pediatric patient health and well-being and determine the value of healthcare services. The emerging paradigm shift toward patient-reported outcomes (PROs) in clinical trials has provided the opportunity to further emphasize the value and essential need for pediatric patient self-reported outcomes measurement. Data from the PedsQL™ Database SM were utilized to test the hypothesis that children as young as 5 years of age can reliably and validly report their HRQOL.

Overall, children with cardiovascular disease perceived lower quality of life than healthy children across all age groups. As perceived by parents, overall quality of life was not significantly different in young children with cardiovascular disease, but children with more severe cardiovascular disease have worse physical and psychosocial quality of life. One in 5 children with cardiovascular disease perceives impaired psychosocial functioning, including children with mild disease severity.

The results demonstrate the measurement properties of the PedsQL Multidimensional Fatigue Scale in pediatric obesity. The findings suggest that the PedsQL Multidimensional Fatigue Scale may be utilized in the standardized evaluation of fatigue in pediatric patients with obesity.

Objectives To determine clinical and health-related quality of life outcomes, and to derive an “ideal” composite profile of children alive 10 years after pediatric liver transplantation (LT) performed in the US and Canada. Study design This was a multicenter cross-sectional analysis characterizing patients enrolled in the Studies of Pediatric Liver Transplantation database registry who have survived >10 years from LT. Results A total of 167 10-year survivors were identified, all of whom received daily immunosuppression therapy. Comorbidities associated with the post-LT course included post-transplantation lymphoproliferative disease (in 5% of patients), renal dysfunction (9%), and impaired linear growth (23%). Health-related quality of life, as assessed by the PedsQL 4.0 Generic Core Scales, revealed lower patient self-reported total scale scores for 10-year survivors compared with matched healthy children (77.2 ± 12.9 vs 84.9 ± 11.7; P < .001). At 10 years post-LT, only 32% of patients achieved an ideal profile of a first allograft stable on immunosuppression monotherapy, normal growth, and absence of common immunosuppression-induced sequelae. Conclusion Success after pediatric LT has moved beyond patient survival. Availability of an ideal composite profile at follow-up provides opportunities for patients, families, and healthcare providers to identify broader sets of outcomes at earlier stages, ultimately contributing to improved outcomes after pediatric LT.

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The results demonstrate the initial measurement properties of the PedsQL™ Infant Scales in healthy and ill infants. The findings suggest that the PedsQL™ Infant Scales may be utilized in the evaluation of generic HRQOL in infants ages 1-24 months.