Importance of access to research information among individuals with spinal cord injury: results of an evidenced-based questionnaire

Objective: To assess the interests and accessibility of patients with a spinal cord injury (SCI) to information in different areas of SCI.Setting: Spinal Program, Toronto Western Hospital, University Health Network.Methods: An interest assessment survey and the SF-36 (short form-36) questionnaire were mailed to SCI patients living in the community. The interest assessment examined patients' interest in information in many areas related to SCI, their current knowledge in these areas and the accessibility of different information formats.Results: Fourteen patients (45%) completed the questionnaires. Regardless of physical or mental health status, all patients expressed a high level of interest in SCI research and clinical trials. An Internet website proved to be the most preferred, accessible and comfortable information format for these patients. Patients expressed a lower interest in support groups and organizations. Results from the SF-36 showed poor social functioning was related to interest in support groups, and poor general health perception was related to interest in occupational and physical therapy.Conclusion: The majority of SCI patients have a high interest in accessing SCI research information. The Internet is a favorable, comfortable and accessible tool for providing this information and will benefit all SCI patients. These results suggest that a significant number of patients with SCI would benefit from an accessible Internet-based information database that is relevant to the SCI patients population.