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

Abstract

Objectives: 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). Methods: 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. Results: 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. Conclusion: 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. Spinal Cord (2012) 50, 227-231; doi:10.1038/sc.2011.106; published online 27 September 2011Keywords: spinal cord injury; aging; social participation; employment; quality of life; adjustment INTRODUCTIONSpinal cord injury (SCI) results in immediate and generally permanent changes to all aspects of life. The rehabilitation process is heavily focused on the time shortly after injury, including inpatient rehabilitation and transition to the community. However, life typically continues for years and even decades after SCI onset. What is the natural course of life changes after SCI? Answering this relatively simple and straightforward question requires a longitudinal investigation of changes in multiple life areas over time.It is tempting to conceptualize the natural course of SCI entirely in terms of aging. As the years pass, an individual's chronological age increases, but so does the number of years after injury. 1 Broader environmental changes also take place, such as those related to rehabilitation practices, medical and technological innovations, and funding practices. Longitudinal studies document the natural course of changes in life outcomes over a particular period of time reflecting a combination of factors, which may not easily be parceled into separate effects.Seve...

Recovery of Biopsychosocial Functions Following 15 Years after Spinal Cord Injury

“…Some authors report that the functional independence level more increased only during inpatient rehabilitation and the highest level of independence is achieved in the first 3 years after SCI and in subsequent periods it does not change significantly [11,30]. Other authors who carried out longitudinal studies covering 15, 20, and 25 years after SCI state that independence is improving not only during medical rehabilitation, which is purposefully directed on reconstruction of functional skills, but also improved with every year after SCI naturally engaging in everyday life [13,31].…”

“…Some authors [13,28] state that the employment rate of people with SCI reaches 35%, while other authors report that during 20 years after SCI employment rates increase to 41% or 58%. Regardless of inconsistency in data published by different countries research, we can assume that persons with SCI are actively trying to participate in the labor market.…”

“…During re-rehabilitation inpatient programs (1-3 years after SCI), efforts are made to maintain the existing skills and to improve functioning, physical activity, participation in daily living activities, and successful social integration [11,12]. However, during this period, psychological and social problems and obstacles emerge as people with SCI often distance themselves from society [13]. In the long-term period, physical strength, endurance, and functional skills of people with SCI slightly improve, and functioning and socialization processes improving each year after SCI by naturally engaging and participating in everyday life show capabilities to adapt to the environment, greater involvement in different activities and better outcomes although it often depends on the surrounding environment [14,15].…”

Functioning and Physical Activity after Spinal Cord Injury.

“…To obtain more detailed data about socio-demographic characteristics and occupations of people with SCI, Life Situation Questionnaire-revised (LSQ-r, JS Krause) were used [6,18,21,22]. For evaluation of functional problems, activities and participation in daily life, ICF Core Sets for Spinal Cord Injury were used [3,4,8,14].…”

“…However, most of these measures cover only selected aspects of the whole SCI health experience and considerably regarding their content and psychometric characteristics. Mostly during inpatient rehabilitation for assessing rehabilitation outcomes and effectiveness were used mobility and daily activities assessing [2,3,17], but none of them can be considered as a standard and none of them covers all aspects of functioning and physical activity in long-term context [4,18,19]. It is very important comprehensively assess functioning and disability, to identify the prototypical spectrum of functional problems associated with personal daily and social life, occupations and activities issues that people with SCI could experience in real life after rehabilitation in 1, 5, 10 and more years [10,20].…”