Evaluating patient perspectives on participating in scientific research and clinical trials for the treatment of spinal cord injury

Abstract

A questionnaire was developed to evaluate patients’ perspective on research aimed at improving functions and overcoming complications associated with spinal cord injury (SCI). The first three sections were based on published and validated assessment tools. The final section was developed to assess participant perspectives on research for SCI. One thousand patients were approached, of which 159 participated. Fifty-eight percent of participants were satisfied with their ‘life as a whole’. Two factors could be generated that reflected the variance in the data regarding participants’ life with a SCI: ‘Psychosocial and physical wellbeing’ and ‘Independent living’. The majority of participants stated they would be involved in research (86%) or clinical trials (77%). However, the likelihood of participation dropped when potential risks of the research/trials were explained. Which participants would be willing to participate in research could not be predicted based on the severity of their injury, their psychosocial and physical wellbeing or their independent living. Despite participant establishment of a life with SCI, our data indicates that individuals strive for improvements in function. Participant willingness to be included in research studies is noteworthy and scientists and clinicians are encouraged to involve more patients in all aspects of their research.