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Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set.

Joan Carney1, Rhona Fisher2, Marika Augutis3

  • 1Rehabilitation Department, Kennedy Krieger Rehabilitation Institute, Baltimore, MD USA.

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

A new data set was developed to collect essential education information for children and youth with spinal cord injury/dysfunction (SCI/D). This tool aims to improve understanding of educational experiences for young individuals with SCI/D.

Keywords:
Health careNeurological disorders

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Area of Science:

  • Rehabilitation Medicine
  • Pediatric Education
  • Disability Studies

Background:

  • Spinal Cord Injury/Dysfunction (SCI/D) significantly impacts educational experiences for children and youth.
  • Standardized data collection is crucial for understanding and addressing educational challenges in pediatric SCI/D.

Purpose of the Study:

  • To develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set.
  • To establish a minimal, highly relevant set of data for assessing educational experiences in pediatric SCI/D.

Main Methods:

  • Utilized established guidelines for data set development.
  • Conducted literature reviews and iterative modifications through expert consensus.
  • Disseminated drafts for feedback among international experts and relevant organizations (ISCoS, ASIA).

Main Results:

  • The International SCI/D Education Basic Data Set Version 1.0 was finalized, comprising 16 items across three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes.
  • Most variables were adapted from existing measures.
  • The data set is designed for children and youth up to high school age.

Conclusions:

  • The developed data set provides a standardized method for collecting key educational information for children and youth with SCI/D.
  • Further validation of the data set is recommended to ensure its efficacy and reliability.