Background: The International SCI Data Sets were developed to capture the minimal amount of information to an individual’s medical status and experience living with SCI. Revision of data sets such as the International SCI Basic Bowel Data Set Version 2.0 modified certain items in order to make them appropriate for children and youth. Because of the important role of caregivers in SCI, the International SCI Basic Caregiver Data Set Version 1.0 was developed.
Objective: Describe preliminary assessment of the reliability and validity of the International SCI Basic Caregiver Data Set Version 1.0 and the International SCI Basic Bowel Data Set Version 2.0 in Pediatric SCI.
Participants/Methods: Youth with SCI aged 7-17 years of age and who were at least 3 months post-discharge from initial rehabilitation and their caregivers. Individuals were interviewed on two separate occasions separated by at least 15 minutes by two different qualified clinical personnel; in the case of the International SCI Basic Bowel Data Set Version 2.0, a third administration was administered 12 -72 hours later.
Results: For both data sets, the test-retest reliability was good for most items (ICC: 0.53-1.00). For the International SCI Basic Bowel Data Set Version 2.0, the inter-method reliability was also good.
Conclusion: The results support the reliability of the International SCI Basic Caregiver Data Set and the International SCI Basic Bowel Data Set for Pediatric SCI.