RESULTS FROM THE INTERNATIONAL SPINAL CORD INJURY COMMUNITY SURVEY: THE LIVED EXPERIENCE OF PEOPLE WITH SPINAL CORD INJURY IN SOUTH-EASTERN BRAZIL

OBJECTIVE: The incidence of spinal cord injury in Brazil is increasing. It is important to understand more about how individuals are living with spinal cord injury. DESIGN: Cross-sectional, observational study of individuals with spinal cord injury in south-eastern Brazil. SUBJECTS: A questionnaire with 125 questions was applied to individuals diagnosed with spinal cord injury. Participants were recruited by survey team from 2 rehabilitation centres (both in south-eastern Brazil) that treat persons diagnosed with SCI. Personal characteristics, associated health conditions, quality of life, work status, environmental factors, and other functioning-related aspects were evaluated. RESULTS: A total of 201 individuals participated in the survey. Of these, 79% were male, mean age 44 years, 60% were considered paraplegic, and the major causes of impairment were firearm injuries and road traffic accidents. Spasticity was the most frequently reported health condition, followed by neuropathic pain. 50% of subjects did not report any difficulty with participation in activities of daily living. However, only approximately 10% of subjects returned to work after spinal trauma. Their quality of life is reported 44% as good. CONCLUSION: Most people with spinal cord injury in south-eastern Brazil are male and paraplegic, health problems and spasticity is considered their most problematic health condition. Although they report having a good quality of life, they still encounter disabling environmental barriers that make their life more difficult, such as poor accessibility of public spaces, and only a small proportion (10%) returned to work after their injury. This study provides an initial overview of the lived experience of people with spinal cord injury in south-eastern Brazil and should serve as a starting point for future research on this population. LAY ABSTRACT The number of cases of spinal cord injury in Brazil is increasing. It is important to know more about how individuals are living with this condition. A questionnaire with 125 questions was applied to individuals diagnosed with spinal cord injury Participants were recruited by survey team from 2 rehabilitation centres (both in south-eastern Brazil) that treat persons diagnosed with SCI. Personal characteristics, associated health conditions, quality of life, work status, environmental factors, and other functioning-related aspects were evaluated. A total of 201 individuals participated in the survey. Of these, 79% were male, and the major causes of impairment were firearm injuries and road traffic accidents. Fifty percent of individuals did not report any difficulty performing activities of daily living. Although people with spinal cord injury reported having a good quality of life, they still encounter disabling environmental barriers that make their life more difficult. This study provides an initial overview of the lived experience of people with spinal cord injury in south-eastern Brazil and should serve as a starting point for future research on this population.