J. Stuart Krause

Recent trends in mortality and causes of death among persons with spinal cord injury

OBJECTIVE To identify and quantify trends in mortality and causes of death among persons with spinal cord injury. DESIGN Cohort study. SETTING Model spinal cord injury care systems and Shriners Hospitals spinal cord injury units throughout the United States. PATIENTS A total of 28,239 consecutive persons admitted to the model system or to a Shriners Hospital within 1 year of injury. MAIN OUTCOME MEASURE Length of survival and cause of death. RESULTS Among persons who were admitted to the model system within 1 day of injury, the odds of dying during the first postinjury year were reduced by 67% for persons injured between 1993 and 1998 relative to persons injured between 1973 and 1977 after adjusting for trends in age, gender, race, neurologic level of injury, Frankel grade, ventilator status, etiology of injury, sponsor of care, and model system where treatment occurred. However, mortality rates after the first anniversary of injury, which had also been declining from 1973 to 1992, increased 33% for persons injured between 1993 and 1998 relative to persons injured between 1988 and 1992. Respiratory disease was the only cause of death after the first anniversary of injury for which the relative odds increased meaningfully during the latest time period (76% increase over 1988-1992 compared to all other causes). CONCLUSION While great improvements in life expectancy have been achieved since the Model SCI Systems program began, current data support the need for renewed efforts to improve the prevention and treatment of the complications of spinal cord injury.

Employment after spinal cord injury: an analysis of cases from the model spinal cord injury systems

OBJECTIVE To describe the relationship of multiple biographic, injury-related, and educational factors with employment outcomes after spinal cord injury (SCI). DESIGN Cross-sectional. SETTING Data were collected through 18 model SCI systems, a nationwide network of hospitals that treat approximately 14% of all SCIs in the United States. PARTICIPANTS A total of 3,756 persons with traumatic SCI who completed the Form II data collection during their annual follow-up at years 1, 2, 5, 10, 15, 20, or 25 years (the most recent Form II was accepted). MAIN OUTCOME MEASURES The Model Systems Forms I and II were used to identify biographic, injury-related status, employment at injury, and productivity status upon follow-up (Form I is used to elicit basic demographic and discharge information, whereas Form II is used to track multiple outcomes during annual follow-ups). The Craig Handicap Assessment Reporting Technique (CHART) was used to assess hours spent in gainful employment and other productive activities. RESULTS CHART data revealed only a modestly higher Employment rate (24.8%) than that of the traditional single Form II item (22%). Being Caucasian, younger at injury, having lived more years with SCI, having a less severe injury, and having more years of education were all predictive of being employed. Violence at injury was associated with lower employment rates (only 12.9% employed), especially among Caucasians (only 24% employed). Being employed at injury was associated with a greater probability of postinjury employment, but only in the first few years after injury. Among employed participants, women and those who had been injured fewer years averaged fewer hours spent at work. CONCLUSIONS Findings were consistent with those in previous studies. Interventions to improve employability should focus on education and the needs of individuals from minority backgrounds.

Depression and life satisfaction among people ageing with post-polio and spinal cord injury

PURPOSE AND BACKGROUND Attention has recently begun to focus on the ageing of individuals with disability, not only as a long-term follow-up issue but as a unique developmental issue itself. The majority of individuals with an onset of disability before age 30 can now expect to live into their 60s, 70s and beyond. Most of the secondary medical conditions that foreshortened life expectancy have been controlled and improved rehabilitation techniques have evolved over the last 50 years. The average age of persons with post-polio in the United States is over 50 and the average age of persons with spinal cord injury is in the late 40s. New medical, functional and psychosocial problems have been discovered among persons ageing with these and other disabilities. Most of these problems lack sufficient scientific explanation, and therefore, clinical interventions. Quality of life (QOL) issues become involved as these changes occur. From a psychological perspective, QOL can be either positive, as reflected in high life satisfaction, or negative, as reflected in distress and depression. METHODS This study reports on life satisfaction and depression in 360 persons, 121 with post-polio, 177 with SCI and 62 non-disabled age-matched comparisons. The Geriatric Depression Scale and the Older Adult Health and Mood Questionnaire assess depressive symptomatology and a 10-item life satisfaction scale with four-point ratings on each item used. RESULTS Life satisfaction varied by the group, with the non-disabled group higher than one or both of the other two groups on all scales and the post-polio group higher than the SCI group on six scales. Satisfaction with health, finances, work and overall life were most different. 22% of the post-polio group, 41% of the SCI group and 15% of the non-disabled group had at least significant repressive symptomatology. CONCLUSION The results for each group are discussed in terms of their relation to other coping variables that were assessed, particularly social support and coping methods.

The Craig Handicap Assessment and Reporting Technique (CHART): Metric Properties and Scoring

The purpose of this study was to facilitate the proper use and interpretation of the Craig Handicap Assessment and Reporting Technique (CHART) as a measure of community integration and social participation in individuals with spinal cord injury (SCI). CHART data on 1,998 cases in the SCI Model Systems database were analyzed. These cases provide the basis for norms by neurologic categories on a large sample. The relationship of CHART subscale scores with demographic factors (age, gender, race/ethnicity, occupation, year post injury, marital status, and education) and level and completeness of SCI are described. Maximum scores achieved for the subscales are presented by time post injury. Sample biases are demonstrated with substantial missing data in the Economic Self Sufficiency subscale. The CHART total score is shown to be a potentially misleading summary assessment of handicap, and use of subscale scores is recommended. The discussion addresses these issues and others relevant to characteristics and pra...

Employment after spinal cord injury: differences related to geographic region, gender, and race.

OBJECTIVE To compare employment outcomes after spinal cord injury (SCI) as a function of several important participant characteristics. DESIGN Field study survey of the employment history of two large samples of people with SCI. Outcomes were compared as a function of multiple participant characteristics. SETTING A large rehabilitation hospital in the Southeast, with the collaboration of two Midwestern hospitals. PARTICIPANTS One thousand thirty-two individuals with SCI, 597 from the Southeast and 435 from the Midwest. MAIN OUTCOME MEASURES The Life Situation Questionnaire-revised (LSQ-R), a self-report measure, was used to identify biographic status and to document employment history. RESULTS On the average, currently employed participants were Caucasian, were younger when injured, had paraplegia, and had completed more years of education. Geographic differences in employment rates disappeared when controlled for multiple factors, including years of education. However, even after controlling for years of education, Caucasian participants were 2.8 times more likely than minority participants to be working at the time of the study. CONCLUSIONS Rehabilitation professionals need to find creative means to identify and neutralize barriers to employment among individuals from minority groups and to identify meaningful avocations for individuals who are injured when they are near retirement.

Mortality after spinal cord injury: an 11-year prospective study

OBJECTIVE To identify the relative risk of mortality after spinal cord injury (SCI) as a function of level of psychosocial, vocational, and medical adjustment. DESIGN A prospective design was used: data on life adjustment was obtained at one time (1985), with subsequent survival status ascertained 11 years later (1996). Logistic regression was used to identify the relative risk of mortality given the level of adjustment on a number of predictor variables. SETTING All participants were selected from outpatient files of a Midwestern university hospital. PARTICIPANTS A total of 345 participants with SCI completed study materials in 1985 (a 78% response rate), 330 of whom could be definitively classified in 1996 as either survivor or deceased. Of these 330 participants, 84% were alive in 1996 (n = 278) and the other 16% were deceased (n = 52). MAIN OUTCOME MEASUREMENTS The Life Situation Questionnaire (LSQ) was used to measure nine primary predictors related to life adjustment after SCI, including employment status and eight predictor scales: Medical Instability, Adjustment, General Satisfaction, Emotional Distress, Dependency, and Poor Health. The LSQ was also used to generate data on 34 individual items that were used in exploratory predictive analyses. RESULTS All but one of the 8 primary adjustment predictors from 1985 significantly predicted 1996 mortality status. Dependency and low overall satisfaction were among the most significant predictors of mortality. CONCLUSIONS Overall quality of life is important to the longevity of people with SCI, and comprehensive rehabilitation programs are needed to promote a level of life adjustment that maximizes longevity after SCI.

Dimensions of subjective well-being after spinal cord injury: An empirical analysis by gender and race/ethnicity

OBJECTIVE The purpose of this study was twofold: (1) to identify the underlying dimensions of subjective well-being after spinal cord injury (SCI), and (2) to develop reliable scales based on measurement of these dimensions. DESIGN A field study was conducted by surveying the subjective well-being of two large samples of participants with SCI. Principal axis factor analysis with varimax rotation was applied to participant responses to 50 subjective well-being items. SETTING All participants were selected from the outpatient files of two midwestern rehabilitation hospitals and from a large southeastern rehabilitation hospital. PARTICIPANTS There were a total of 1,032 participants, 435 from the Midwest and 597 from the Southeast. MAIN OUTCOME MEASURES The Life Situation Questionnaire-revised version (LSQ-R) was used to measure subjective well-being. It included two prominent sections, one for life satisfaction (20 items) and the other for self-reported problems (30 items). RESULTS Seven subjective well-being factor scales were identified across the full participant sample: Engagement, Negative Affect, Health Problems, Career Opportunities, Finances, Living Circumstances, and Interpersonal Relations. The average alpha coefficient was .86 for the factor scales. Separate analyses of the midwestern and southeastern samples suggested stability of the factor structure, although gender and race/ ethnicity were related to subtle differences in subjective well-being. CONCLUSIONS The results suggest that rehabilitation professionals need to pay attention to multiple aspects of subjective well-being after SCI.

Adjustment after spinal cord injury: A 9-Year longitudinal study

OBJECTIVE To generate longitudinal data on the stability of life adjustment over a 9-year period among a sample of participants with spinal cord injury (SCI). DESIGN A field study was conducted by surveying the adjustment of a sample of participants with SCI in 1985 and again in 1994. SETTING Outpatient files of a large, university hospital in the Midwest. PARTICIPANTS All 235 participants had traumatic onset SCI, were a minimum of 18 years of age at the time of first testing, and were no less than 2 years postinjury. The average age was 46.7 yrs at the time of the 1994 study, with an average of 23.4 yrs having passed since injury. MAIN OUTCOME MEASURES The Life Situation Questionnaire (LSO) was the outcome measure used. It was developed in 1973 to measure mostly objective information on adjustment and quality of life after SCI. It contains 7 scales and 40 individual items that were of interest in the current study. RESULTS Declines were identified over the 9-year period in several aspects of subjective well-being, even though there were no declines in overall activity level and some limited increases in participation in employment related activities. CONCLUSIONS The results of this study were in contrast to previous longitudinal follow-ups that identified positive changes over time in both subjective and objective aspects of quality of life. These changes suggest that participants had a less optimistic outlook in 1994 than they did in 1985.

Aging and life adjustment after spinal cord injury

Study Design: A field study of aging after spinal cord injury (SCI) was conducted by surveying the life adjustment of a large sample of participants with SCI. Objectives: The purpose of the current study was to compare life adjustment scores between cohorts of participants based on chronologic age, age at injury onset, time since injury and percentage of life with SCI. Summary of Background Data: Existing cross-sectional research suggests that age is negatively correlated and time since injury is positively correlated with life adjustment. However, few studies had investigated aging among people who have lived 30 or more years with SCI. Methods: A total of 435 participants, 55 of whom were injured for 30 or more years, completed the Life Situation Questionnaire-Revised (LSQ-R), a measure of multiple SCI outcomes. Results: Results indicated that being injured later in life is associated with a lower overall level of subjective well-being, poorer health, and a less active lifestyle. However, subjective well-being appears to improve throughout the life-cycle, even beyond 30 years post-injury, thus neutralizing the adverse impact of age at onset on subjective well-being, but not on health or activities. Conclusions: The results suggest that rehabilitation professionals need to pay special attention to problems presented by being injured after the age of 40, particularly as it relates to activities. Living 30 or more years with SCI does not appear to present overwhelming barriers to adjustment.

Health behaviors among american indians with spinal cord injury: comparison with data from the 1996 behavioral risk factor surveillance system

OBJECTIVE To identify patterns of health behaviors and health outcomes among a sample of American Indian men with spinal cord injury. DESIGN Telephone interviews with all participants, except those who did not have telephones (they returned materials by mail). SETTING Large rehabilitation hospital in the Western mountain region of the United States. PARTICIPANTS Seventy-six American Indian men with traumatic SCI of at least 1 year in duration. MAIN OUTCOME MEASURE Selected health-related behaviors from the Behavioral Risk Factor Surveillance System (BRFSS) were used to assess health behaviors and general health outcomes among the American Indian SCI sample and to compare findings with those from American Indian men without SCI based on nationwide BRFSS data. RESULTS The study participants reported lower overall health and satisfaction with health care than the non-SCI BRFSS group. They also reported a different pattern of health behaviors, including a greater frequency of inoculations for flu and pneumonia but a lower rate of HIV testing and cholesterol screening. A smaller percentage of American Indians used alcohol, but those who did reported more heavy drinking. CONCLUSIONS American Indians with SCI are more likely to receive health care consistent with the prevention of secondary conditions of SCI (eg, pneumonia), but less likely to receive basic health screens intended to prevent chronic health diseases.