Implementation of a Standardized Dataset for Collecting Information on Patients With Spinal Cord Injury

Abstract

Background: Over the last decade, the International Spinal Cord Injury Data Sets project developed a number of International Spinal Cord Injury Data Sets (ISCIDS) that can be used to collect standardized information on patients with SCI. Objective and Methods: The aim of this article is to describe the process of translating the ISCIDS into Dutch and reaching consensus on a Dutch National SCI Data Set (NDD). The interrater reliability of the NDD and implementation of the NDD at eight rehabilitation centers with a specialty in rehabilitation after SCI in the Netherlands are described. Results: NDD was implemented successfully at all eight centers. Some adaptations were made to the ISCIDS, especially to the core data set. The reliability coefficients of the NDD items were at least sufficient (mean kappa per data set ranged between .68 and .91), and mean agreement per data set ranged from 66% to 97%. Experiences from the participating centers were mainly positive as well. The main obstacle for use was thought to be the absence of a link between the local patient files and the national database, which necessitates double data entry. Conclusion: Although the results on interrater reliability are based on a small sample size and the assessment situation is different from the normal clinical situation, this study showed the NDD to be a useful instrument to collect standardized information on patients with SCI in the Netherlands. In the future, a connection between systems or another way to centrally collect the data is recommended to prevent double data entry and to guarantee continuation of administration of the NDD.

Keywords: ISCIDS; data sets; database; registry; spinal cord injury.