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

Top Spinal Cord Inj Rehabil, 2018 · DOI: 10.1310/sci2402-133 · Published: April 1, 2018

Spinal Cord Injury Rehabilitation Research Methodology & Design

Simple Explanation

The International Spinal Cord Injury Data Sets (ISCIDS) project has developed standardized data sets for collecting information on patients with SCI. This article describes 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.

Study Duration

Not specified

Participants

30 patients with spinal cord injury

Evidence Level

Not specified

Key Findings

1
The NDD was implemented successfully at all eight centers after some adaptations were made to the ISCIDS, especially to the core data set.
2
The reliability coefficients of the NDD items were at least sufficient.
3
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.

Research Summary

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). NDD was implemented successfully at all eight centers. Some adaptations were made to the ISCIDS, especially to the core data set. 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.

Practical Implications

Standardized Data Collection

The NDD provides a standardized method for collecting data on patients with SCI in the Netherlands, facilitating collaboration and data sharing among rehabilitation centers.

Quality Improvement

The NDD can be used to track clinical outcomes and identify areas for quality improvement in SCI rehabilitation.

Research Facilitation

The NDD creates a participant database that can be used for future research studies on SCI.

Study Limitations

1
The results on interrater reliability are based on a small sample size.
2
The assessment situation is different from the normal clinical situation.
3
The absence of a link between the local patient files and the national database, which necessitates double data entry.

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