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

Joan Carney; Rhona Fisher; Marika Augutis; Susan Charlifue; Fin Biering-Sørensen; Wiebke Höfers; Miriam Hwang; Peter Wayne New; Marcel Post; Cristina Sadowsky; Lawrence Vogel; Lilly Augustine; Kathryn Dent; M J Mulcahey

doi:10.1038/s41394-019-0229-1

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

Spinal Cord Ser Cases. 2019 Oct 21:5:87. doi: 10.1038/s41394-019-0229-1. eCollection 2019.

Authors

Affiliations

¹ Rehabilitation Department, Kennedy Krieger Rehabilitation Institute, Baltimore, MD USA.
² Fisher Association, Baltimore, MD USA.
³ 3Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
⁴ 4Research Department, Craig Hospital, Englewood, CO USA.
⁵ 5Department of Spinal Cord Injuries, Neuroscience Centre, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
⁶ 6Physiotherapy Department, Sunnaas Hospital, Bjørnemyr, Norway.
⁷ 7Research Department, Shriners Hospitals for Children, Chicago, IL USA.
⁸ 8Epworth-Monash Rehabilitation Unit, Department of Epidemilogy and Preventitive Medicine, School of Public Health and Preventative Medicine, Monash University, Melbourne, Australia.
⁹ 9Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands.
¹⁰ 10School of Education and Psychology, Jönköping University, Jönköping, Sweden.
¹¹ Department of Occupational Therapy, Center for Outcomes and Measurement, Jefferson College of Rehabilitation Sciences, Jefferson (Philadelphia University+Thomas Jefferson University), Philadelphia, PA USA.

Abstract

Study design: Consensus among international experts.

Objectives: The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set.

Setting: International expert working group.

Methods: The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA.

Results: The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools.

Conclusion: The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed.

Sponsorship: This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

Keywords: Health care; Neurological disorders.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Data Collection / methods*
Data Collection / trends
Education / methods
Education / trends
Health Education / methods*
Health Education / trends
Humans
International Cooperation*
Schools / trends
Societies, Medical* / trends
Spinal Cord Injuries / epidemiology*
Students