Clara Farrehi1, Carlotta Pazzi1, Maclain Capron1, Kim Anderson2, Bonnie Richardson1,2, Michael Stillman3. 1. Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, PA, USA. 2. Metrohealth Medical Center, Case Western Reserve University School of Medicine, Cleveland, OH, USA. 3. Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, PA, USA. michael.stillman@jefferson.edu.
Abstract
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.
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.
Authors: Becky Matter; Melanie Feinberg; Katherine Schomer; Mark Harniss; Pat Brown; Kurt Johnson Journal: J Spinal Cord Med Date: 2009 Impact factor: 1.985
Authors: Kevin L Kilgore; Anne Bryden; Michael W Keith; Harry A Hoyen; Ronald L Hart; Gregory A Nemunaitis; P Hunter Peckham Journal: Top Spinal Cord Inj Rehabil Date: 2018