Evaluating Patient Perspectives and Opinions on Research for SCI.

• Research type

  Research Study

• Full title

  A Questionnaire designed to evaluate the perspectives and opinions of the chronic Spinal Cord Injury (SCI) patient population: ’Translational Research for SCI: Current and Future Perspectives’.

• IRAS ID

  134411

• Contact name

  Karina Wright

• Contact email

  Karina.Wright@rjah.nhs.uk

• Sponsor organisation

  Robert Jones and Agnes Hunt Orthopaedic Hospital

• Research summary

  Research Summary
  In recent years there have been many scientific advances in the development of new treatments for spinal cord injury (SCI). The range of approaches being tested are complex and diverse and include, to name but a few, new drugs, cell therapies, electrotherapy, robotics and physiotherapy both individually and often in combination. These exciting scientific advances are starting to be translated into the clinic, which has begun to offer hope to SCI patients world-wide. What the field as a whole is lacking is a real understanding of the perspective of the SCI patient population for the meaningful (and ethical) translation of this research. This is important as the results of interventions are yet to be established in humans and some may result in complications. We have developed a questionnaire to evaluate the opinion of the SCI patient population on current issues relating to the translation of basic research for SCI to the clinic. We hope that this study will aid in bridging the gap for scientists and clinicians from the bench to bedside by auditing the opinion of those patients most likely to benefit from the proposed interventions currently under development

  Summary of Results
  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.

• REC name

  North West - Preston Research Ethics Committee

• REC reference

  13/NW/0663

• Date of REC Opinion

  21 Jan 2014

• REC opinion

  Further Information Favourable Opinion