Examining the Lived Experiences of Patients with Spinal Cord Injury and the perceived Sociocultural role of Emerging Spinal Cord Stimulation Technology

Introduction: Implantable spinal cord stimulation (SCS) is an emerging therapy for spinal cord injury (SCI). Recent studies have shown restoration of motor function with implantable and transcutaneous SCS. However, patients’ perspectives on implantable SCS have not been reported.

Methods: Using semi-structured interviews, we collected data from 11 traumatic SCI patients regarding the functional deficits they hoped implantable SCS technology would restore, their concerns over adverse effects, and their interest in trying this novel, invasive therapy. Interview transcripts were coded using a hybrid deductive and inductive approach. Two study authors separately coded all interviews before reconciling their independent coding into “master coded” interviews, which were analyzed to identify common themes.

Our sample included seven participants with complete thoracic SCI, one with conus medullaris injury, one with post-SCI central cord syndrome, and two with traumatic SCI with unspecified patient-reported level of injury. Nine participants were male. Participants were recruited through online referrals (SCIFinder, Xpert Trial, SCI Trials), local rehab centers, and patients screened for clinical trial NCT04302259.

Results: 6/11 participants were open to trying SCS: 3/6 were motivated to try a novel therapy, while 2/6 wanted to advance science and help future patients. In describing what they wanted from SCS, 7/11 hoped it would return bowel or bladder function, and 9/11 hoped it would return motor function. Sexual function and sensation were lower priority with 3/11 and 5/11 participants mentioning them, respectively. Concerns included cost and the risk of surgery needed to implant the device. Many feared SCS would reintroduce pain from their SCI or subsequent spasticity or joint damage.

Conclusion : Federal research grants mandate that patients’ experiences be incorporated into clinical trial research. Our qualitative study is the first to report patient perspectives on SCS for SCI and may inform future neuromodulation research protocols and implant design.