title: Development and pilot test of the shriners pediatric instrument for neuromuscular scoliosis (SPNS): a quality of life questionnaire for children with spinal cord injuries.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Shriners Hospitals for Children, Clinical Research Department, 3551 North Broad Street, Philadelphia, PA 19140, USA. lhunter@shrinenet.org
authors.forename: Louis
authors.initials: L
authors.lastname: Hunter
authors.forename: Fred
authors.initials: F
authors.lastname: Molitor
authors.forename: Ross S
authors.initials: RS
authors.lastname: Chafetz
authors.forename: Mary Jane
authors.initials: MJ
authors.lastname: Mulcahey
authors.forename: Lawrence C
authors.initials: LC
authors.lastname: Vogel
authors.forename: Randal R
authors.initials: RR
authors.lastname: Betz
authors.forename: Craig M
authors.initials: CM
authors.lastname: McDonald
mesh_terms: D000293:Adolescent; D002648:Child; D032882:Comprehension / Q000502:physiology; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010372:Pediatrics; D010865:Pilot Projects; D011788:Quality of Life; D012600:Scoliosis / Q000209:etiology* / Q000523:psychology*; D013119:Spinal Cord Injuries / Q000150:complications* / Q000523:psychology*; D013131:Spine / Q000002:abnormalities*; D011795:Surveys and Questionnaires