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

Background: Advances 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.

Objective: To 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.

Design: Cross-sectional cohort study.

Setting: Home and community settings.

Participants: People aged 50 years or older with SCI for at least 10 years.

Methods: Data were collected through interviews and assessments during home visits and from the participants' medical records.

Main Outcome Measurements: Study-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.

Results: Of 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.

Conclusion: These 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.