The PedsQL™ as a pediatric patient-reported outcome: reliability and validity of the PedsQL™ Measurement Model in 25,000 children

Abstract

The PedsQL™ Measurement Model was designed as a modular approach to measuring pediatric health-related quality of life, and developed to integrate the relative merits of generic and disease-specific approaches. The PedsQL™ 4.0 Generic Core Scales have been translated into over 60 languages, with published data on over 25,000 children and adolescents in more than 75 peer-reviewed journals since 2001 for healthy children and numerous pediatric chronic health conditions. The PedsQL™ Disease and Condition-Specific Modules were designed to measure health-related quality-of-life dimensions specifically tailored for pediatric chronic health conditions, and include the PedsQL™ Asthma, Arthritis/Rheumatology, Cancer, Diabetes, Cardiac and Cerebral Palsy Modules, as well as the generic PedsQL™ Multidimensional Fatigue Scale, Pediatric Pain Questionnaire™, Family Impact Module and Healthcare Satisfaction Module. The PedsQL™ has demonstrated reliability, validity, sensitivity and responsiveness for child self report for ages 5–18 years and parent proxy report for ages 2–18 years. The PedsQL™ has been shown to be related to other key constructs in pediatric healthcare such as access to needed care, healthcare barriers and quality of primary care. Future advances in the PedsQL™ Measurement Model include web-based electronic administration (ePedsQL™), integration into the electronic medical record, further efficacy and effectiveness outcome trials, including PedsQL™ ResourceConnectSM and PedsQL™ TIPSSM, the development of the generic PedsQL™ Infant Scales for ages birth to 24 months and disease and condition-specific modules for other pediatric chronic health conditions.