How individuals with spinal cord injury in the United States access and assess information about experimental therapies and clinical trials: results of a clinical survey

Study design An internet-based survey. Objectives To determine how individuals with spinal cord injury (SCI) access information about experimental therapies and clinical trials. To understand which factors influence receipt of and perceived trustworthiness of that information. Setting Two academic medical centers and an SCI organization. Methods Demographic information frequencies and percentages were calculated then analyzed using chi-square tests for independence. Fisher’s exact test of independence was used to assess significance for contingency tables with categories containing expected counts below five. Results Three hundred sixty four persons with SCI participated in the survey. Most felt confident in their ability to evaluate SCI-specific information from a variety of sources, though SCI organizations and the medical literature were deemed the most reliable. Information from SCI specialists was deemed more credible than that from non-SCI specialists, but only 53.6% of participants had access to them. Nearly all (89.0%) respondents who had sought information about experimental therapies had found it online, while 51.4% of those who had participated in a clinical trial had been contacted by a research team. Only 8.4% of participants felt their medical teams offered them sufficient information about experimental therapies and clinical trials. Wealthier and more educated respondents were more knowledgeable about health-related resources on the internet. Nearly all participants (96.9%) expressed interest in learning more about trials related to SCI. Conclusions There is an information deficit among people with SCI pertaining to experimental therapies and clinical trials. It is exacerbated by lack of income, education, and access to SCI specialists.