A systematic review of psychometric properties of the Pediatric Quality of Life Inventory™ 4.0 generic core scales: in pediatric cancer patients and survivors

Abstract

ABSTRACT Background: The Pediatric Quality of Life Inventory™ (PedsQL) Measurement Model was developed to assess generic and disease-specific health-related quality of life (HRQOL) in pediatric populations. To our knowledge, there are currently no systematic reviews of studies that have examined the psychometric properties of the PedsQL 4.0 Generic Core Scales in pediatric patients with cancer and survivors. We sought to answer the question, ‘What is the reliability, validity, feasibility, range of measurement, and responsiveness of the PedsQL 4.0 Generic Core Scales in pediatric cancer patients and survivors?’ Method: Full-text articles published between 2001 and February 2016 were included in the review if they assessed reliability, validity, feasibility, range of measurement, and/or the responsiveness of the PedsQL 4.0 Generic Core Scales in a pediatric oncology sample or sample of survivors. Two independent reviewers conducted the search in the databases PsycINFO and PubMed which resulted in 16 studies meeting full inclusion criteria. Results: The studies reviewed were all published between 2002 and 2014 and were conducted across 12 different countries. The majority of the studies reported Cronbach’s alphas that met or exceeded 0.70 for parent proxy-report and child self-report 8–18 years. Almost all of the studies assessing construct validity found children with cancer and their parents reported statistically significant lower HRQOL than healthy children across the PedsQL domains. With the exception of the 5–7 year old child self-report form and the School Functioning Scale across age forms, the studies in our review reported excellent feasibility, with less than 1% of missing items. Minimal to no floor effects were reported. Ceiling effects were found in all of the studies that assessed range of measurement, and were most common for the PedsQL Physical Functioning and Social Functioning domains. Conclusions: Taken as a whole, the studies in our review demonstrate acceptable psychometric properties of the PedsQL 4.0 Generic Core Scales in pediatric patients with cancer and survivors. Additional validation studies are warranted to establish test-retest reliability and responsiveness over time of the PedsQL 4.0 Generic Core Scales in this population.