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

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.