Abstract
BackgroundThis study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA).MethodsThe PRQL is a 10-item HRQoL measure with two subscales: physical health and psychological health. The original version of this measure was validated using an Italian-speaking cohort of 472 JIA patients and 796 healthy controls and found to have acceptable psychometric properties. The English language version has not been validated in a US pediatric population. The English PRQL was administered to 161 JIA subjects from a US Rheumatology clinic. We assessed the reliability (internal consistency and test-retest) and validity (convergent, discriminative, and criterion) of the PRQL.ResultsThe English PRQL was feasible to administer and demonstrated good psychometric properties. Cronbach alpha (reliability) coefficients ranged from 0.72 to 0.81. Factor analysis yielded the existing subscales. The PRQL total and subscales were found to have moderate correlations with other HRQoL instruments, the Pediatric Quality of Life Inventory (PedsQL) generic core scale and the PedsQL rheumatology. The PRQL discriminated between subjects with active versus inactive disease and was responsive to an improvement or worsening in disease activity over time.ConclusionsOur results suggest that the English version of the instrument is suitable for use in JIA patients in the US. This tool provides a relatively easy method to integrate at least one patient-reported outcome into routine clinical or research assessment.
Highlights
This study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA)
Several validated HRQoL measures exist to measure HRQoL in children with rheumatology conditions e.g. the Pediatric Quality of Life Inventory (PedsQL) and the Juvenile Arthritis Quality of Life Questionnaire (JAQQ)), but these existing instruments are either time consuming, costly, and/or complicated to administer in clinical settings
All subjects met International League of Associations for Rheumatology (ILAR) criteria [15] for JIA according to the treating physician. 96% (161/167) of people approached agreed to participate in the study
Summary
This study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile idiopathic arthritis (JIA). The Consolidated Standards of Reporting Trials (CONSORT) patient reported outcome extension was released that urged inclusion of PROs as Several validated HRQoL measures exist to measure HRQoL in children with rheumatology conditions e.g. the Pediatric Quality of Life Inventory (PedsQL) and the Juvenile Arthritis Quality of Life Questionnaire (JAQQ)), but these existing instruments are either time consuming, costly, and/or complicated to administer in clinical settings. The PedsQL Generic Core and Rheumatology modules are costly to use in routine clinical practice [7]. The ability of children to select the 5 most problematic areas in each domain to answer allows for a unique individualized assessment over time but makes comparison of scores across children problematic [12]
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