Progress of the Dutch Spinal Cord Injury Database: Completeness of Database and Profile of Patients Admitted for Inpatient Rehabilitation in 2015

Marcel W M Post, Janneke Nachtegaal, Sacha A van Langeveld, Maureen van de Graaf, Willemijn X Faber, Ellen H Roels, Coen A M van Bennekom

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Background: In the Dutch International Spinal Cord Injury (SCI) Data Sets project, we translated all International SCI Data Sets available in 2012 and created a Dutch SCI Database (NDD). Objective: To describe the number of included patients and completeness of the NDD, and to use the NDD to provide a profile of people with traumatic SCI (T-SCI) and non-traumatic SCI (NT-SCI) in the Netherlands. Methods: The NDD includes patients admitted for their first inpatient rehabilitation after onset of SCI to 1 of the 8 rehabilitation centers with a specialty in SCI rehabilitation in the Netherlands. Data of patients admitted in 2015 were analyzed. Results: Data for 424 patients were available at admission; for 310 of these patients (73.1%), discharge data were available. No significant differences were found between patients with and without data at discharge. Data were nearly complete (>90%) for lower urinary tract, bowel, pain, and skin. Data on sexual function has the lowest completion rate. Complete neurological and functional data were available for 41.7% and 38%, respectively. Most patients were male (63.4%), had NT-SCI (65.5%), and had incomplete SCI (58.4% D). Patients with T-SCI differed from patients with NT-SCI on most characteristics, and they stayed considerably longer in the rehabilitation center (112 days vs 65 days, p < .001). Place of discharge was not different between both groups. Conclusion: With the NDD, we collect important data on the majority of Dutch SCI patients, although much work needs to be done to improve the completeness of the data collection.

Original languageEnglish
Pages (from-to)141-150
Number of pages10
JournalTopics in Spinal Cord Injury Rehabilitation
Issue number2
Publication statusPublished - 2018

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