PedsQL™ Spinal Cord Injury Module: Reliability and Validity

Objectives: The objective was to report on the initial measurement properties of the Pediatric Quality of Life Inventory' (PedsQL (TM)) Spinal Cord Injury (SCI) Module in youth with SCI from the youth and parent perspectives. Methods: PedsQL (TM) SCI Module and PedsQL (TM) 4.0 Generic Core Scales SF15 were completed in a multisite national study by 166 youth ages 8 to 25 years and 128 parents of youth ages 5 to 23 years. Data from the PedsQL (TM) Generic Core Scales were compared with an age- and sex-matched healthy control sample. Factor analysis was conducted to determine the factor structure of the items. Results: In addition to a Total Scale Score, nine unidimensional scales were derived measuring daily activities, mobility, bladder function, bowel function, pressure injury, pain interference, social participation, worry bladder bowel, and worry social. The PedsQL (TM) SCI Module evidenced excellent reliability for Total Scale Scores (youth self-report, alpha = 0.93; parent proxy-report, alpha = 0.93) and acceptable reliability for the nine individual scales (youth self-report, alpha = 0.71-0.83; parent proxy-report, alpha = 0.67-0.87). Intercorrelations with the Generic Core Scales supported construct validity with medium to large effect sizes (most ps < .001). Factor analysis supported the unidimensionality of the nine individual scales. PedsQL (TM) Generic Core Scales comparisons to healthy controls demonstrated significantly impaired generic health-related quality of life in youth with SCI with large effect sizes. Conclusion: The PedsQL (TM) SCI Module Scales demonstrated acceptable measurement properties and may be utilized as standardized scales to assess SCI-specific concerns and problems in clinical research and practice in youth with SCI.