TY - JOUR
T1 - Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set
AU - Carney, Joan
AU - Fisher, Rhona
AU - Augutis, Marika
AU - Charlifue, Susan
AU - Biering-Sørensen, Fin
AU - Höfers, Wiebke
AU - Hwang, Miriam
AU - Wayne New, Peter
AU - Post, Marcel
AU - Sadowsky, Cristina
AU - Vogel, Lawrence
AU - Augustine, Lilly
AU - Dent, Kathryn
AU - Mulcahey, M. J.
N1 - Funding Information:
Conflict of interest At the time of this study, MJM received research support from the Shiners Hospitals for Children, National Institute Neurological Disease and Stroke, The Craig H. Neilsen Foundation and The Rick Hansen Institute. She receives compensation for her role as Associate Editor for Topics in Spinal Cord Rehabilitation, royalties for the text book “The Child and Young Adult with Spinal Cord Injury.” LV receives compensation for his role as Editor for Topics in Spinal Cord Rehabilitation, royalties for the text book “The Child and Young Adult with Spinal Cord Injury. The remaining authors declare no conflict of interest.
Publisher Copyright:
© 2019, The Author(s), under exclusive licence to International Spinal Cord Society.
PY - 2019/12/1
Y1 - 2019/12/1
N2 - 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).
AB - 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).
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U2 - 10.1038/s41394-019-0229-1
DO - 10.1038/s41394-019-0229-1
M3 - Article
C2 - 31700685
AN - SCOPUS:85074710227
SN - 2058-6124
VL - 5
JO - Spinal Cord Series and Cases
JF - Spinal Cord Series and Cases
IS - 1
M1 - 87
ER -