Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, PA, USA.
Metrohealth Medical Center, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
Spinal Cord Ser Cases. 2020 Nov 23;6(1):103. doi: 10.1038/s41394-020-00354-6.
An internet-based survey.
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.
Two academic medical centers and an SCI organization.
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.
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.
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.
基于互联网的调查。
确定脊髓损伤（SCI）患者如何获取有关实验疗法和临床试验的信息。了解哪些因素影响他们对这些信息的获取和信任程度。
两家学术医疗中心和一家 SCI 组织。
计算人口统计学信息的频率和百分比，然后使用卡方检验进行独立性分析。对于包含预期计数低于五的类别 contingency tables，使用 Fisher 确切检验进行独立性评估。
364 名 SCI 患者参与了调查。大多数人对自己从各种来源评估 SCI 特定信息的能力有信心，尽管 SCI 组织和医学文献被认为是最可靠的信息来源。来自 SCI 专家的信息被认为比非 SCI 专家的信息更可信，但只有 53.6%的参与者能够获得这些信息。几乎所有（89.0%）寻求过实验疗法信息的受访者都在网上找到了相关信息，而 51.4%参加过临床试验的受访者曾被研究团队联系过。只有 8.4%的参与者认为他们的医疗团队向他们提供了足够的关于实验疗法和临床试验的信息。收入较高和受教育程度较高的受访者对互联网上的健康相关资源了解更多。几乎所有参与者（96.9%）都表示有兴趣了解更多与 SCI 相关的试验。
SCI 患者在实验疗法和临床试验方面存在信息不足的问题。收入、教育程度和获取 SCI 专家资源的机会不足进一步加剧了这一问题。
