The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set
Miriam Hwang1, Marika Augutis2, Cristina Sadowsky3
11Research Department, Shriners Hospitals for Children, Chicago, IL USA.
Insights
A new International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set was developed. This standardized tool captures essential data for children aged 6-17 with SCI.
Area of Science:
- Rehabilitation Medicine
- Pediatric Healthcare
- Outcome Measurement
Background:
- Standardized data collection is crucial for understanding activity and participation in pediatric spinal cord injury (SCI).
- Existing measures may not adequately capture the nuances of daily life for children with SCI.
- The development of a pediatric-specific data set is needed to complement adult measures.
Purpose of the Study:
- To develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set.
- To establish a standardized minimal data set for children with SCI.
- To facilitate consistent recording of activity and participation information.
Main Methods:
- International focus groups involving pediatric and adult SCI experts.
- Iterative refinement of an initial draft over 12 months.
- Literature review and incorporation of existing outcome measures.
- Review and approval by a larger project working group and international expert societies.
Main Results:
- The International SCI Pediatric A&P Basic Data Set includes 13 key variables.
- Variables cover mobility, self-care, communication, social participation, and physical activity.
- The data set is intended for children aged 6-17 with SCI, at least 3 months post-rehabilitation.
Conclusions:
- The developed data set standardizes the recording of activity and participation in children with SCI.
- This tool aims to improve data consistency and comparability.
- Further research is required for reliability testing and cultural validation.
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).
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