Natural course of life changes after spinal cord injury: a 35-year longitudinal study

To identify the natural course of changes in participation, employment, health and subjective quality of life over a 35-year interval among participants with spinal cord injury (SCI).

Participants were enrolled in 1973 from a specialty hospital in the Midwestern United States and assessed again approximately 35 years later. The inclusion criteria were the following: having traumatic SCI; being 18 years of age or older; and a minimum of 2 years having elapsed post injury. There were 64 participants who responded on both occasions. Average age at follow-up was 61.5 years, with 41.1 years having passed since SCI onset. The Life Situation Questionnaire was used to measure outcomes.

Attrition analyses indicated that those who participated at follow-up were younger and had better overall outcomes at baseline (1973) when compared with those who dropped out of the study. Longitudinal analyses indicated a mixed pattern of favorable and unfavorable changes over the 35 years. The overall social participation decreased over time, although the sitting tolerance and hours spent in gainful employment increased. Non-routine physician visits increased. Satisfaction with employment improved over time, whereas satisfaction with social life, sex life and health declined. Self-reported adjustment improved, but the prediction of future adjustment in 5 years declined.

Our study suggests that the natural course of SCI is marked by a survivor effect, whereby those with better outcomes are more likely to survive to follow-up, and a mixed pattern of favorable and unfavorable changes. Rehabilitation professionals should work to promote favorable outcomes in areas of strength, as well as minimize the likelihood of adverse outcomes.