Shirneshan E, Shewale A, Edwards T, Norcross L, Fehnel S, Pfleeger K. Lived experiences after motor complete spinal cord injury (C4–C7): insights from a qualitative study. Poster presented at the American Spinal Injury Association (ASIA) 2026 Annual Scientific Meeting; April 24, 2026. San Antonio, TX.

OBJECTIVE: Over 20 million people worldwide live with spinal cord injury (SCI),1 yet no pharmacological treatments are approved for functional recovery.2 Therefore, there is limited guidance on capturing the most meaningful aspects of treatment outcomes from the perspective of those affected by SCI.3 Increasingly, research efforts aim to incorporate feedback from people with lived experience of SCI.4,5 This study aimed to characterize experiences and goals for rehabilitation and recovery among people living with motor complete C4–C7 SCI.

DESIGN/METHODS: Semistructured qualitative interviews were conducted with 20 adults living in the United States who had a diagnosis of acute traumatic motor-complete SCI between levels C4 and C7 with no damage to C1–C3. The first 12 interviews focused on understanding physical changes and functional impacts after SCI. The remaining 8 interviews centered on eliciting more in-depth participant feedback on select patient-reported outcome (PRO) measures, including the SCI-Quality of Life (SCI-QOL) Bladder Management Difficulties, Bowel Management Difficulties, and Independence Short Forms, and the self-report version of the Spinal Cord Independence Measure (SCIM-III). These results are descriptive; no inferential statistics were computed.

RESULTS: Interview participants had a mean (SD) age of 40.8 (14.3) years; 65% were female. At screening, participants reported experiencing SCI ≤1 year (n=5), 1–5 years (n=8), or ≥5 years (n=7) ago. In addition to describing the many physical changes resulting from SCI, all participants reported the difficulty of being dependent on others. Most commonly, participants included bladder/bowel dysfunction and difficulty using arms/hands among the most bothersome physical changes they had experienced. Consistent with these results, participants identified the following treatment targets as among the most important to increase their level of independence: hand function (n=9), walking/leg function (n=9), and bladder/bowel dysfunction (n=5). Participants reported that each PRO measure reviewed addressed relevant and important topics with questions generally easy to understand and answer, although some participants suggested improvements to the SCIM-III response options.

CONCLUSION: Adapting to a loss of independence is an important and challenging aspect of rehabilitation following a motor complete C4–C7 SCI. Even very small improvements in physical functioning that facilitate independence are meaningful to those living with SCI, such as small improvements in hand/arm function, bladder/bowel function, and walking/leg function. Although participants’ feedback on the PRO measures reviewed was mostly positive, their characterization of even small functional gains as potentially life-changing suggests that current PRO measures may not capture the relatively subtle but meaningful changes. Results may have been limited by the predominance of female respondents, as the overall SCI population is primarily male. The results of this study were used to update a previously developed conceptual model of the impacts of motor complete C4–C7 SCI and may inform the development of PRO measures for use in future clinical trials of SCI therapies.