Susan Charlifue

Mortality, morbidity, and psychosocial outcomes of persons spinal cord injured more than 20 years ago

Mortality, morbidity, health, functional, and psychosocial outcomes were examined in 834 individuals with long term spinal cord injuries. All were treated at one of two British spinal injury centres: the National Spinal Injuries Centre at Stoke Mandeville Hospital or the Regional Spinal Injuries Centre in Southport; all were 20 or more years post injury. Using life table techniques, median survival time was determined for the overall sample (32 years), and for various subgroups based on level and completeness of injury and age at injury. With the number of renal deaths decreasing over time, the cause of death patterns in the study group as it aged began to approximate those of the general population. Morbidity patterns were found to be associated with age, years post injury, or a combination of these factors, depending upon the particular medical complication examined. A current medical examination of 282 of the survivors revealed significant declines in functional abilities associated with the aging process. Declines with age also were found in measures of handicap and life satisfaction, but three quarters of those interviewed reported generally good health and rated their current quality of life as either good or excellent.

Long-term survival in spinal cord injury : a fifty year investigation

The aims of this study were to examine long-term survival in a population-based sample of spinal cord injury (SCI) survivors in Great Britain, identify risk factors contributing to deaths and explore trends in cause of death over the decades following SCI. Current survival status was successfully identified in 92.3% of the study sample. Standardised mortality ratios (SMRs) were calculated and compared with a similar USA study. Relative risk ratio analysis showed that higher mortality risk was associated with higher neurologic level and completeness of spinal cord injury, older age at injury and earlier year of injury. For the entire fifty year time period, the leading cause of death was related to the respiratory system; urinary deaths ranked second followed by heart disease related deaths, but patterns in causes of death changed over time. In the early decades of injury, urinary deaths ranked first, heart disease deaths second and respiratory deaths third. In the last two decades of injury, respiratory deaths ranked first, heart related deaths were second, injury related deaths ranked third and urinary deaths fourth. This study also raises the question of examining alternative neurological groupings for future mortality risk analysis.

Long-term spinal cord injury: Functional changes over time

Functional changes were assessed in a group of 279 individuals with long-term spinal cord injuries. All had sustained their initial injuries 20 to 47 years ago and all had received initial and postinjury follow-up care at one of two British spinal cord injury treatment centers. Twenty-two percent reported that the need for physical assistance from others had increased over the years. Most (45%) needed additional help with transfers; others needed more assistance with dressing, mobility, and toileting. When compared to those whose need for help had not increased, significant differences were found by age: as a group, and when separated by level and severity of injury, those needing more help were older, and those with cervical injuries needed help at younger ages than their counterparts with lower level injuries. Those needing more help also had significantly more reports of shoulder pain, fatigue and weakness, weight gain, and postural changes. They used more attendant care, and perceived their quality of life to be lower than those whose level of function had not changed over time.

International standards to document remaining autonomic function after spinal cord injury.

Study design:Experts opinions consensus.Objective:To develop a common strategy to document remaining autonomic neurologic function following spinal cord injury (SCI).Background and Rationale:The impact of a specific SCI on a persons neurologic function is generally described through use of the International Standards for the Neurological Classification of SCI. These standards document the remaining motor and sensory function that a person may have; however, they do not provide information about the status of a persons autonomic function.Methods:Based on this deficiency, the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS) commissioned a group of international experts to develop a common strategy to document the remaining autonomic neurologic function.Results:Four subgroups were commissioned: bladder, bowel, sexual function and general autonomic function. On-line communication was followed by numerous face to face meetings. The information was then presented in a summary format at a course on Measurement in Spinal Cord Injury, held on June 24, 2006. Subsequent to this it was revised online by the committee members, posted on the websites of both ASIA and ISCoS for comment and re-revised through webcasts. Topics include an overview of autonomic anatomy, classification of cardiovascular, respiratory, sudomotor and thermoregulatory function, bladder, bowel and sexual function.Conclusion:This document describes a new system to document the impact of SCI on autonomic function. Based upon current knowledge of the neuroanatomy of autonomic function this paper provides a framework with which to communicate the effects of specific spinal cord injuries on cardiovascular, broncho-pulmonary, sudomotor, bladder, bowel and sexual function.

International Spinal Cord Injury Core Data Set.

Study design:Survey of expert opinion, feedback, and development of final consensus.Objective:Present the background, purpose, development process, and results for the International Spinal Cord Injury (SCI) Core Data Set.Setting:International.Methods:A committee of experts was established to select and define data elements to be included in an International SCI Core Data Set. A draft core data set was developed and disseminated to appropriate organisations for comment. All suggested revisions were considered, and a final version of the core data set was disseminated again for approval and adoption.Results:The core data set consists of 24 variables, including basic demographic characteristics, dates of admission and discharge from initial acute and rehabilitation care, cause of injury, place of discharge, presence of vertebral fractures and associated injuries, occurrence of spinal surgery, and measures of neurological and ventilator status.Conclusion:Collection of the core data set should be a basic ingredient of all future studies of SCI to facilitate accurate description of patient populations and comparison of results across published studies from around the world.

Longitudinal outcomes in spinal cord injury: aging, secondary conditions, and well-being

OBJECTIVE To specify the degree to which current age, duration of injury, and neurologic status affect the frequency of secondary health and psychosocial conditions in persons with long-term spinal cord injury (SCI), using both longitudinal and cross-sectional analysis techniques. DESIGN Prospective longitudinal examination and data collection involving individuals with SCI studied initially at their 5th, 10th, and 15th anniversaries postinjury, and subsequently 5 years later at their 10th, 15th, and 20th anniversaries postinjury. SETTING Five Regional Model Spinal Cord Injury Systems. PARTICIPANTS The 439 individuals who meet the inclusion criteria for the National SCI Database and who are enrolled in a longitudinal study of secondary conditions and SCI. MAIN OUTCOME MEASURES Physical and psychosocial status at various times postinjury. RESULTS There are different reports of various conditions when analyzing by neurologic groups, duration of injury, and age. Cross-sectional and longitudinal analyses also demonstrate different patterns of complications. CONCLUSIONS The longitudinal method, like cross-sectional research, allows for identification of physical and psychosocial changes soon after they occur. Longitudinal research, however, also makes possible the development of predictive models for various long-term outcomes.

Sexual issues of women with spinal cord injuries.

The need for research addressing problems unique to women with spinal cord injuries is well documented. Consequently, 231 such women, ages 18 to 45, were surveyed. Demographic characteristics and data relating to physician usage, female hygiene, pregnancy, contraception and sexuality were collected.Analysis revealed that 60% of the respondents had post injury amenorrhea; the average time until menses resumption was 5 months. The groups post injury pregnancy rate was one-third its pre injury rate, but women with incomplete paraplegia had significantly more pregnancies than those with complete quadriplegia.Of 47 women who did carry babies to delivery, one-half had vaginal deliveries; 49% used no anesthesia. Problems during pregnancy included autonomie hyperreflexia, decubitus ulcers, urinary tract infections, water retention, bladder and bowel problems, anemia, spotting, fatigue, cardiac irregularity and toxemia. Many of these problems plagued the women during labor and delivery and in the post partum period as well.Sixty-nine percent of the women were satisfied with their post injury sexual experiences, although self confidence, spasticity, and lack of spontaneity were issues. Although satisfied with care received from physicians, many women were not content with the information provided during rehabilitation, and felt a need for more literature, counselling, and peer support.

Spouses of spinal cord injury survivors: The added impact of caregiving☆☆☆

OBJECTIVE To better understand the needs of spouses who provide care to spinal cord injury (SCI) survivors, by comparing their self-perceptions and complaints with those of their partners with disabilities and with those of spouses who do not provide care. DESIGN Survey, including demographics, health concerns questionnaire, and administration of the Center for Epidemiologic Studies Depression Scale (CES-D), the Perceived Stress Scale (PSS), the Life Satisfaction Index (LSI-Z), and the Quality of Life and Individual Needs Questionnaire. SETTING Two British SCI treatment centers, serving a defined population-based catchment area. PARTICIPANTS One hundred twenty-four spouses of a longitudinally followed sample of SCI survivors, all of whom had been injured 23 or more years when the study was conducted in 1993. OUTCOME MEASURES Scores on the above standardized tests, and responses to survey questions. RESULTS Spouses had more depressive affect (p < .001) than their partners with disabilities, as measured by the CES-D. On the PSS, they exhibited no significant differences. Compared with spouses who were not caregivers, the caregiving spouses reported more physical stress (p = .005), emotional stress (p = .011), burnout (p = .007), fatigue (p = .002), and anger and resentment (p = .029). On the CES-D, they had more symptoms of depressive affect (p = .004) and somatic depression (p = .005). CONCLUSIONS Spouses of long-term SCI survivors who fulfill a caregiving role report more symptoms of stress and depression than their partners with disabilities and other spouses who are not caregivers.

Predicting community reintegration after spinal cord injury from demographic and injury characteristics

OBJECTIVE To determine the influence of demographic and injury characteristics on the community reintegration of people with spinal cord injury (SCI). DESIGN Prospective cross-sectional and longitudinal examination of individuals with SCI. SETTING Follow-up of individuals at 1, 2, 5, 10, 15, and 20 years after SCI who received their initial rehabilitation in a Regional Model Spinal Cord Injury System. PARTICIPANTS A total of 3,835 individuals who met the inclusion criteria for the National SCI Database were studied cross-sectionally, and a subset of 347 individuals who were also enrolled in a longitudinal study of aging with SCI. MAIN OUTCOME MEASURES Subscales of the Craig Handicap Assessment and Reporting Technique (CHART). RESULTS Neurologic classification, age, years postinjury, gender, ethnicity, and education explain 29% of the variance in physical independence, 29% of the variance in mobility, 28% of the variance in occupation. 9% of the variance in social integration, and 18% of the variance in economic self-sufficiency. CONCLUSIONS Although these factors are inadequate to explain most of the variation in community reintegration (handicap) after SCI, they might appropriately be used to adjust for case-mix differences when comparing rehabilitation facilities and techniques.

International spinal cord injury data sets

Study design:Discussion and development of final consensus.Objective:Present the background, purpose, and process for the International Spinal Cord Injury (SCI) Data Sets development.Setting:International.Methods:An international meeting on SCI data collection and analysis occurred at a workshop on May 2, 2002, before the combined meeting of the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS) in Vancouver, British Columbia, Canada. At this meeting, a process was developed for selection of data elements to be included in International SCI Data Sets.Results:An overall structure and terminology has been developed following the format of the International Classification of Functioning, Disability and Health (ICF). This includes definitions of the Core Data Set, as well as Modules with Basic Questions or Data Sets and Expanded Data Sets. The Core Data Set has been developed and will be presented separately. Working groups for additional modules are being established as well as general guidelines for the development of the modules.Conclusion:The presented format should help in developing data sets and modules within various topics related to SCI.