The natural course of spinal cord injury: changes over 40 years among those with exceptional survival

J S Krause, J C Newman, J M R Clark, M Dunn

To identify 40-year longitudinal changes in health, activity, employment, life satisfaction and self-rated adjustment after spinal cord injury. Longitudinal, mailed self-report. Participants were identified from outpatient records of a Midwestern USA university hospital in 1973. Follow-ups were conducted in 1984 and approximate 10-year intervals thereafter. A total of 49 participants completed each of the five assessments. Data were reviewed and analyzed by research team members and a research associate with experience in biostatistics at a medical university in Southeastern USA. Life Situation Questionnaire included the following: (1) demographic and injury characteristics, (2) educational status and employment, (3) community participation, (4) life satisfaction, (5) adjustment, and (6) recent medical history. Proportion of individuals with 10+ non-routine physician visits increased from consistently <10% to >40% during the 40 years. Proportion who spent a week or more in hospital increased from a low of 10% at 20-year follow-up to 43% at 40-year follow-up. Percentage employed and average hours employed initially improved over time but decreased substantially during the last two times of measurement. Satisfaction with health, sex life and social life declined over time, whereas satisfaction with employment improved initially and was maintained over time. Self-rated current adjustment remained stable, whereas predicted future adjustment declined steadily over 40 years. Age-related declines were apparent for need of physician visits and hospitalizations, with notable declines in satisfaction with sex life, social life and health. However, not all indices declined over time. Participants appeared to maintain stability when rating their own adjustment.Spinal Cord advance online publication, 6 December 2016; doi:10.1038/sc.2016.159.