The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set

Abstract

Study design International focus groups. Objectives The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set. Methods A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved. Results The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months. Conclusion The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed.

A Primary Care Provider’s Guide to Pediatric Spinal Cord Injuries

“…In addition, several pediatric-specific International SCI Data Sets for activity and participation, education, and bowel function have been developed, and they would be appropriate for primary care clinicians to use. [5][6][7]…”

“…Ensure well child care milestones are met. 5. In adolescence, begin planning for transition to adult care.…”

Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI)

“…Several of these data sets have been reviewed to identify questions relevant for the pediatric population. In addition, new data sets have been designed specifically for the pediatric population [32][33][34], which has improved the ability to compare and combine data. However, the content of specialized pediatric SCI rehabilitation has not been standardized or described; only one study [29] has tried to compare the care and rehabilitation services for pediatric SCI in European countries.…”