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.

Long-term bladder and bowel management after spinal cord injury: a 20-year longitudinal study.

STUDY DESIGN: Prospective observational. AIM: The aim of this study was to analyse changes in bladder and bowel management methods in persons with long-standing spinal cord injury (SCI). SETTING: Two spinal centres in UK. METHOD: Data were collected through interviews and examinations between 1990 and 2010 in a sample of persons injured more than 20 years prior to 1990. RESULTS: For the 85 participants who completed the 2010 follow-up, the mean age was 67.7 years and the mean duration of injury was 46.3 years, 80% were male, 37.7% had tetraplegia AIS grade A, B, or C, 44.7% paraplegia AIS A, B, or C, and 17.6% an AIS D grade regardless of level. In all, 50.6% reported having changed their bladder method, 63.1% their bowel method, and 40.5% both methods since they enroled in the study. The reasons for change were a combination of medical and practical. In men, condom drainage remained the most frequent bladder method, and in women, suprapubic catheter replaced straining/expressing as the most frequent method. The use of condom drainage and straining/expressing bladder methods decreased, whereas the use of suprapubic and intermittent catheters increased. Manual evacuation remained the most frequent bowel management method. The percentage of participants on spontaneous/voluntary bowel emptying, straining and medications alone decreased, whereas the use of colostomy and transanal irrigation increased over time. CONCLUSIONS: More than half the sample, all living with SCI for more than 40 years, required change in their bladder and bowel management methods, for either medical or practical reasons. Regular follow-ups ensure adequate change of method if/when needed.

Comparison of statistical methods for calculating life expectancy after spinal cord injury.

STUDY DESIGN: Retrospective observational. OBJECTIVES: To compare results of several different methods for calculating life expectancy in the same sample of people with spinal cord injury (SCI), and critically assess their advantages and disadvantages. SETTING: Two spinal centres in Great Britain. METHODS: Survival status of persons with traumatic SCI injured between 1943 and 2010 with follow-up to 2015 was determined. Standardised mortality ratios (SMRs) were calculated using age at injury and current (attained) age, and compared. Life expectancy was then estimated using the SMR methods and compared with the results of a method based on multivariate logistic regression of a person-year dataset. Life expectancy estimates calculated by applying SMRs based on current age to general population period (current) and cohort (projected) life tables were also compared. RESULTS: The estimated life expectancies were significantly higher when the SMRs were based on age at injury. They were also higher when a general population cohort life table was used, particularly for younger ages. With the exception of the ventilator-dependent group, the life expectancy estimates derived from logistic regression were slightly lower than those derived from SMRs based on current age and a general population period life table. CONCLUSIONS: The multivariate logistic regression of person-years method offers several advantages compared to the SMR method for calculating life expectancy after SCI, the main ones being: greater statistical power and precision with smaller sample sizes, the ability to include more predictive factors and to distinguish the otherwise confounded effects of current age, time post-injury, and calendar time.