Development and Pilot Test of the Shriners Pediatric Instrument for Neuromuscular Scoliosis (SPNS): A Quality of Life Questionnaire for Children With Spinal Cord Injuries

Background/Objective: Children and adolescents who have sustained a spinal cord injury (SCI) are at risk of developing spine deformities and secondary complications that may affect their quality of life. The Shriners Pediatric Instrument for Neuromuscular Scoliosis (SPINS) is a condition-specific instrument that was developed to measure the health-related quality of life (HRQOL) of this patient population. A pilot study was conducted to revise the SPINS and assess comprehensibility. Methods: Fourteen children with SCI (ages 6-16 y) from a pediatric hospital were administered either a child version (ages 10-18 y) or a parent version (ages 5-9 y) of the SPINS. Problematic items were identified based on participants' feedback or low statistical variance. Results: Ten of 14 (71 .6%) respondents understood at least 90% of the items, and 13 out of 14 (92.9%) comprehended more than 80% of relevant items on the SPINS. Conclusion: The SPINS has demonstrated comprehensibility. The next step is to measure the validity and reliability of the instrument. The SPINS shows promise as a means of assessing quality of life related to brace effectiveness in children with SCI and neuromuscular scoliosis who primarily use a wheelchair for mobility.