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.