Perceived Effect of the COVID-19 Pandemic Among People With Spinal Cord Injury: A Descriptive Study

OBJECTIVE: To describe the self-reported effect of the COVID-19 pandemic on the lives of persons with spinal cord injury. DESIGN: Cross-sectional study. PARTICIPANTS: There were a total of 382 adult participants with traumatic spinal cord injury of at least 1-year duration, all of whom were identified through a state-based surveillance registry in the Southeastern United States (N=382). The majority of participants were male (68.4%) and 72% were ambulatory. The average age at the time of the study was 57.7. MAIN OUTCOME MEASURES: Participants completed a self-report assessment online or by mail on the effect of COVID-19 on quality of life, ability to get daily necessities, and access to health care. RESULTS: Over half of the participants reported a negative effect of the pandemic in at least 1 of 5 life areas (58.9%), with community participation being the primary area affected (51.4%). A small number of individuals had trouble obtaining necessities, with approximately 12% reporting difficulties getting enough or quality food and 8.2% reporting difficulty getting prescription medications. In addition, 25% reported delaying health care procedures because of fear of catching COVID-19. Among those requiring personal assistance, 32% reported a decrease in quality of care and 51.9% relied more on family to assist with their care. CONCLUSION(S): The COVID-19 pandemic had multiple negative effects. Of particular importance were reduced access to health care and declines in quality and stability of attendant care, with greater reliance on family. Fear of contracting COVID-19 when accessing routine medical procedures needs to be addressed in future outbreaks.