The Swedish Aging With Spinal Cord Injury Study (SASCIS): Methodology and Initial Results

Abstract

BackgroundAdvances in acute treatment, physiatric care, and rehabilitation have improved survival greatly after spinal cord injury (SCI) and increased longevity. This has led to a need for an in-depth understanding of factors associated with healthy aging in people with long-term SCI. ObjectiveTo present the methodology and initial results of the Swedish Aging with Spinal Cord Injury Study, a longitudinal cohort survey targeting older adults with long-term SCI. DesignCross-sectional cohort study. SettingHome and community settings. ParticipantsPeople aged 50 years or older with SCI for at least 10 years. MethodsData were collected through interviews and assessments during home visits and from the participants' medical records. Main Outcome MeasurementsStudy-specific protocol with custom-designed questions, and validated generic and SCI-specific assessment tools focusing on functioning, disability, health, well-being, lifestyle, and personal and environmental factors. ResultsOf 795 potential participants, 184 matched the inclusion criteria and the final sample comprised 123 participants (67% response rate; 36 women and 87 men, mean age 63 ± 9 years, mean time since injury 24 ± 12 years). Traumatic SCI accounted for 62%, and 31% had sustained a complete SCI. A majority was married or had a partner, and used some form of assistance and/or mobility device. Thirty-five percent were working full-time or part-time. Based on the American Spinal Injury Association Impairment Scale (AIS), 3 groups of SCI severity were formed. There were no significant differences in chronological age, marital status, or vocational situation between the tetraplegia AIS A-C group (n = 22), the paraplegia AIS A-C group (n = 41), and the all AIS D group (n = 60). Participants in the all AIS D group were significantly older at injury, had a shorter time since injury, and were less likely to use mobility devices compared with the other 2 groups. ConclusionThese baseline data of the Swedish Aging with Spinal Cord Injury Study provide a description of older adults with long-term SCI. Forthcoming studies and subsequent follow-ups will generate new insights into factors that promote healthy aging, minimize disability and enhance participation, quality of life, and life satisfaction in people aging with long-term SCI.