Participation restriction and assistance needs in people with spinal cord injuries of more than 40 year duration

Study design Prospective observational. Objectives Examine changes in participation restriction and assistance needs in a sample of people with long-standing spinal cord injuries (SCIs). Setting Two British spinal centres. Methods The sample consisted of British ageing with SCI study participants who were seen at baseline (1990 or 1993) and in the final follow-up (2010). Outcome measures were the Craig Handicap Assessment and Reporting Technique–Short Form (CHART-SF) and interview questions about assistance needs. Results Eighty-five Ageing study participants took part in 2010; their mean age was 67.65 years and the mean time since injury was 46.26 years. The mean CHART-SF physical independence subscore decreased from 97.44 in 1990 to 91.26 in 2010, mobility from 95.58 to 82.10, occupation from 86.82 to 64.49 and social integration from 96.29 to 88.68 (all p < 0.05). Increasing assistance needs were reported by 10.1% of participants in 1990, by 36.6% in 2010 ( p < 0.05) and by 62.4% over the entire 20-year study period. Persons requiring more assistance were older and injured longer, had a more severe SCI and lower self-reported quality of life and life satisfaction ( p < 0.05). In the multivariate logistic regression, the strongest predictor of needing more assistance was injury severity ( p < 0.05). Conclusions An increase in participation restriction and in assistance needs was reported over the 20 year follow-up in persons injured more than 40 years ago. SCI severity was the main risk factor for needing more assistance. Clinical awareness of how participation changes with age may help provide timely intervention and offset declines.