Patient and caregiver knowledge of severity of injury among youth with spinal cord injury.

ABSTRACT

DESIGN: Multicenter cross sectional study. OBJECTIVES: Describe patient and caregiver knowledge of severity of injury and examine the relationship between AIS status and patient/caregiver report. SETTING: United States METHODS: Participants were between 1 and 21 years of age with a stable spinal cord injury (SCI). Participants underwent ISCSCI exams and were interviewed with the following questions 1. Did the patient/caregiver know the difference between complete and incomplete spinal cord injury before participation? 2. What level of injury does the patient/caregiver report? 3. What severity of injury does the patient/caregiver report? 4. If a severity is given, who told them and how was it tested? RESULTS: Overall, 16% of patients and 20% of caregivers knew the difference between complete and incomplete SCI. Older patients were more likely to know the difference and caregivers of patients with shorter durations of injury were more likely to know the difference. Those who reported a severity of injury different from their actual severity were more likely to have a complete spinal cord injury and a higher injury severity as measured by the AIS impairment scale. Only 18% of people who were able to report a severity of injury stated that an ISCSCI exam was how the doctor gave them the diagnosis. CONCLUSION: Many patients and caregivers do not understand the difference between complete and incomplete SCI. It is vital that an AIS diagnosis only be given following the ISCSCI exam based on agreed standards.