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Preliminary findings of the ASPIRE-SCI study to evaluate self-reported health information in people living with spinal cord injury
Location: East Ballroom
Mentor: Dr. David McMillan
Spinal cord injury (SCI) necessitates specialized medical care, yet accurate health information is critical for optimal treatment. In the absence of routine clinical measures, providers often rely on patient self-reporting, which may lead to diagnostic errors and suboptimal care. The ASPIRE-SCI study (Accuracy of Self-Report Patient Information RElevant to Spinal Cord Injury) evaluates self-report inaccuracies in individuals with chronic SCI.
Twenty-one adults with chronic SCI participated, self-reporting across twelve health categories (e.g., neurological level, body weight, circulatory status) via visual analog scales (VAS) or direct responses. These were compared against clinically validated measures from the NINDS Common Data Elements (CDE) for SCI, including the International Standards for Neurological Classification of SCI (ISNCSCI), BMI calculations, and standardized questionnaires.
Notable discrepancies emerged: One participant rated circulatory health at 100/100 VAS despite hypertensive BP (149/64 mmHg), while another reported perfect scores with hypotensive BP (79/44 mmHg). Bowel health self-reports averaged 79.3±19.8 (VAS) versus a Neurogenic Bowel Dysfunction Score of 10.6±8.0 (near "severe" dysfunction). Breathing was self-reported as 91.7±13.1 (VAS), yet sustained phonation (21.6±7.8 sec) indicated respiratory function comparable to an 85-year-old. Weight misreporting also risked obesity misclassification under SCI-specific BMI criteria.
These findings highlight clinically significant self-report inaccuracies in SCI, raising concerns given the heavy reliance on patient-reported data. To mitigate diagnostic errors and ensure proper care, clinicians ought to aspire to use objective measures over self-report where possible. ASPIRE-SCI underscores the need for improved health monitoring in SCI management to prevent unchecked abnormalities and guide effective long-term treatment.
