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.
Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).
Keywords: Health care; Neurological disorders.
© The Author(s), under exclusive licence to International Spinal Cord Society 2019.