The spinal cord independence measure (SCIM)-III self report for youth.

STUDY DESIGN: The items and response scales of the Spinal Cord Independence Measure (SCIM-III) self report (SR) were exposed to formal cognitive testing with children with SCI, and in parallel a survey using the modified Delphi Technique was conducted to engage content experts in an iterative critical review of the SCIM-III SR. OBJECTIVES: To evaluate the validity of the SCIM-III SR for pediatric utilization. SETTING: United States of America. METHODS: Formal cognitive testing was conducted with 17 youths with SCI and required them to read and answer each SCIM-III SR item aloud. Think aloud methodology was used to record details about how youths understood and interpreted items and why they selected a given response. The interviews were audiotaped and transcribed verbatim. Content analysis focused on identifying words that children could not read or understand. In parallel, the Modified Delphi Technique engaged expert therapists to critically review the SCIM-III SR for pediatric utilization. RESULTS: Every SCIM-III SR item and response scale required modification before children were able to read, understand and respond to them. Youth encountered difficulties because of vague terms, medical jargon and complex words and phrases. Three iterative Delphi rounds were required before achieving 80% agreement that items and response scales were written well for children. CONCLUSION: Our findings informed modifications to every SCIM-III SR item and response scale, producing a pediatric version of the tool that we formally refer to as the SCIM-III SR-Youth (SCIM-III SR-Y). SPONSORSHIP: The study was funded by the Craig H Neilsen Foundation, Spinal Cord Injury Research on the Translation Spectrum, Senior Research Award #282592 (Mulcahey, PI).