Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations

STUDY DESIGN: Mixed methods, using the Modified Delphi Technique and Expert Panel Review.

OBJECTIVE: To evaluate the utility and relevance of the International Spinal Cord Injury (SCI) Core and Basic Data Sets for children and youth with SCI.

SETTING: International.

METHODS: Via 20 electronic surveys, an interprofessional sample of healthcare professionals with pediatric SCI experience participated in an iterative critical review of the International SCI Data Sets, and submitted suggestions for modifications for use with four pediatric age groups. A panel of 5 experts scrutinized the utility of all data sets, correlated any modifications with the developing National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDE) and distributed final recommendations for modifications required to the adult data sets to the International SCI Data Set Committee and the associated Working Groups.

RESULTS: Two International SCI Data Sets were considered relevant and appropriate for use with children without any changes. Three were considered not appropriate or applicable for use with children, regardless of age. Recommendations were made for five data sets to enhance their relevance and applicability to children across the age groups, and recommendations for seven data sets were specific to infants and younger children.

CONCLUSIONS: The results of this critical review are significant in that substantive recommendations to align the International SCI Core and Basic Data Sets to pediatric practice were made.

SPONSORSHIP: This project was funded by the Rick Hansen Institute Grant# 2015-27.