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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.

Spinal Cord Series and Cases
|November 9, 2019
PubMed
Summary

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.

Keywords:
Health careNeurological disorders

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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.