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Biomedical subjects

S W Charlifue

Publications and source records attributed to S W Charlifue.

15 recordsLinked to original sources

Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning.

OBJECTIVE: The objective of this paper is to outline the proposed development process for the ICF Core Sets for Spinal Cord Injury (SCI) and to invite clinical and consumer experts to actively participate in this process. ICF Core Sets are selections of categories of the International Classification of Functioning, Disability and Health (ICF) that are relevant to persons with a specific condition or in a specific setting. METHOD: The project is a cooperation between the ICF Research Branch of the World Health Organization (WHO) Collaboration Centre of the Family of International Classifications (DIMDI, Germany), the Classification, Assessment and Terminology (CAT) team and the Disability and Rehabilitation (DAR) team at WHO, the International Spinal Cord Society (ISCoS) and International Society for Physical and Rehabilitation Medicine (ISPRM) and partner institutions across the world. The project will consist of four worldwide studies to be conducted from 2006 to 2007 with a proposed ICF Core Set Consensus Conference to be held in 2007. ICF categories relevant for SCI are to be identified by means of (I) an empirical study, (II) a systematic review of outcomes and measures used in SCI research (III) an expert survey and (IV) focus groups and semistructured interviews with persons with SCI. Consensus about items that have to be part of a Comprehensive and of a Brief ICF Core Set for SCI will be reached in a final ICF Core Set Consensus Conference. Subsequent field testing will be necessary to validate this first version of ICF Core Sets for SCI. INVITATION FOR PARTICIPATION: The development of ICF Core Sets is an inclusive and open process. Anyone who wishes to actively participate in this process is invited to contact the project coordinator (Monika.Scheuringer@med.uni-muenchen.de or http://www.icf-research-branch.org/research/spinalcord-injuries.htm). Individuals, institutions and associations can be formally associated as partners of the project.

Database Management Systems↗

Prospective evaluation of urological effects of aging in chronic spinal cord injury by method of bladder management.

AIMS: Risk of treatment-related problems in spinal cord injury (SCI) mandates assessment of complication rates of different bladder management methods (BMMs). The current study evaluated aging-related complications of various BMMs over a 6-year period in a population with spinal cord injury for at least 20 years. MATERIALS AND METHODS: Clinical parameters were compared using a linear mixed effects model, controlling for various confounding variables, to establish complication trends with aging and their association with BMM. Results for people whose BMM was changed during the study were evaluated separately as well as in combination with the whole population. RESULTS: One hundred and ninety six people (mean age 57.4 and years post injury (YPI) 33) were evaluated on three occasions. Both age and YPI were significantly associated with rising complication rates regardless of BMM. The BMMs assessed differed in terms of complication rates. In comparison with balanced reflex voiding, straining was significantly better for renal structural abnormality. Intermittent catheterization was associated with significantly worse renal function, possibly for demographic reasons. Overall, 28.8% changed BMM during the study period, particularly, those using straining or balanced reflex voiding. The probability of change increased with age and YPI. Reasons for change of BMM were varied and there was no specific association between reason for change and BMM. CONCLUSIONS: Aging and duration of injury substantially influence urological complication rates, and BMM options differ in respect of prevalence and incidence of complications. At a late stage post injury there remains a high probability of change in BMM. The findings indicate the importance of long-term planning from the time of injury to minimize late complications.

Adult↗

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.

Activities of Daily Living↗

Follow-up study of individuals with high tetraplegia (C1-C4) 14 to 24 years postinjury.

OBJECTIVE: To determine the life circumstances and psychosocial status of individuals with respirator-assisted and respirator-independent high tetraplegia an average of 19 years after spinal cord injury. DESIGN: Survey data were analyzed separately for ventilator-assisted and ventilator-independent groups. SETTING: Three spinal cord injury rehabilitation centers in California, Colorado, and Texas. SUBJECTS: Eighty-two individuals with CI-C4 tetraplegia between 14 and 24 years postinjury who had received acute inpatient rehabilitation. MAIN OUTCOME MEASURES: Demographics, health care utilization patterns, activities of daily living (Katz Level of Free Time Activities Scale), self esteem (Rosenberg Self Esteem Scale), quality of life, and employment. RESULTS: Self esteem and quality of life were, reported as high. Most subjects had some form of health care insurance. More than 90% lived in private homes. Approximately one third of cases had at least a college degree, yet only one quarter reported being employed. One fifth of individuals were married. Almost half of ventilator-independent cases and one quarter of ventilator-assisted cases lived in households with income of less than $20,000 per year. Mean hospital days in the past year were 11 for the ventilator-independent group and 6 for the ventilator-assisted group. The latter group required more nursing level care, significantly more hours of care, and more paid attendants over the year. Ninety-five percent of individuals reported being "glad to be alive." CONCLUSIONS: Assistance in the areas of socialization, financial status, personal assistance services, transportation, and entry into competitive employment were defined as needed. Quality of life was higher than expected, considering the substantial physical limitations of the group. The sample was almost unanimously glad to be alive, including all ventilator-assisted individuals.

Adult↗

Correlates of stress in long-term spinal cord injury.

STUDY DESIGN: Longitudinal. OBJECTIVES: To characterize long-injured SCI persons with high reported stress; to assess the relationship between severity of disability and perceived stress; to identify correlates of future stress and outcomes of previous stress. SETTING: Two SCI centres in England: Stoke Mandeville Hospital in Aylesbury, and the District General Hospital in Southport. METHODS: In 1990, 1993 and 1996 187 persons who sustained spinal cord injuries prior to 1971 underwent comprehensive physical evaluations and health status interviews and completed a battery of tests to measure psychosocial functioning. Using mean scores on the Perceived Stress Scale (PSS) as the reference, a range of outcomes were analyzed to identify concurrent, previous, and future variables that were significantly correlated with perceived stress. RESULTS: No associations were found between stress and any of the proxy variables that represented injury severity. Such common SCI-related medical conditions as pressure sores and upper extremity pain were not related to stress; not even fatigue was significantly associated with stress in both time periods studied. However, depressive symptoms, poorer life satisfaction, and poorer perceived well being were associated with future stress and were outcomes that appeared to be related to earlier stress. CONCLUSION: Perceived stress in long-term SCI is not closely related to the severity of the disability or physical independence. It is, however, related to scores on several measures of adjustment and coping. Though mean stress scores in this sample did not appear to differ substantially from scores in the general nondisabled population, further controlled study is needed to definitively answer the question: Do SCI survivors report more stress than their nondisabled counterparts?

Adaptation, Psychological↗

Evaluating neurological group homogeneity in assessing the mortality risk for people with spinal cord injuries.

A study of 3178 individuals injured in Britain between 1943 and 1990 and surviving the first year post-injury was conducted to evaluate the homogeneity of mortality risk ratios within groups based on varying degrees of neurological injury level and completeness of the injury. The study shows that it is less than optimal to combine individuals into neurological groupings of C1-C4 ABC, C5-C8 ABC and T1-S5 ABC since the risk ratios are not homogeneous within these groups. Similarly, combining individuals into neurological groupings of tetraplegia complete, tetraplegia incomplete, paraplegia complete and paraplegia incomplete may not be appropriate for the same reasons. The consequence of performing a survival analysis using either of the traditional sets of groups is to dilute the risk ratios for a subset of individuals within a particular group, thereby providing less discrimination between neurological groups. Cox proportional hazards regression was employed to determine a set of neurological groupings with homogeneous risk ratios within a group while providing better differentiation between groups.

Adolescent↗

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.

Adolescent↗

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.

Adult↗

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.

Activities of Daily Living↗

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.

Adaptation, Psychological↗

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 group's 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 autonomic 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.

Adolescent↗

Quantifying handicap: a new measure of long-term rehabilitation outcomes.

According to the World Health Organization (WHO), handicaps exist when individuals are unable to fulfill expected social roles. Although ameliorating handicaps is one of the prime goals of rehabilitation, its effectiveness in this area is poorly measured and has not been documented empirically. Therefore, the Craig Handicap Assessment and Reporting Technique (CHART) was designed to quantify the extent of handicap in individuals. Using dimensions of handicap identified and described by the WHO, CHART uses measurable, behavioral terms to compare such individuals with the norms of able-bodied members of society. Test-retest, proxies, and independent raters have established the validity and reliability of CHART. Rasch analysis has verified the CHART scaling and scoring procedures. In addition, an initial application of CHART, with a group of 342 spinal cord injured individuals, is described. Beyond demonstrating the instrument's effectiveness in assessing the extent of handicap or social disadvantage, this application, by documenting rehabilitation outcomes, demonstrates the potential usefulness of CHART for program evaluation.

Activities of Daily Living↗

Impairment, disability, handicap and medical expenses of persons aging with spinal cord injury.

Data from 205 Craig Hospital patients with spinal cord injuries (SCI) were analysed with regard to level of injury, age, length of time since SCI, disability (as measured by the Functional Independence Measure), handicap (as measured by the Craig Handicap Assessment and Reporting Technique), and average annual costs for services relating to the SCI. Differences in disability, handicap, and costs of care were analysed by chronological age and length of time since injury. Older individuals showed significant increases in disability and handicap. When chronological age was added to the number of years post-injury, significant increases in disability, handicap, and costs of care were noted at all neurological levels.

Adolescent↗

Behavioral and demographic predictors of suicide after traumatic spinal cord injury.

Among people with spinal cord injuries, death from suicide is two to six times more prevalent than in the general population. To determine if individual characteristics and behaviors present during rehabilitation can identify high-risk individuals, records of 5,200 spinal cord injured patients admitted to the Rocky Mountain Regional Spinal Injury System were reviewed. Of 489 deaths, 9% were due to suicide. They were compared with a control group of equal size, matched on age, gender, and injury level. The two groups differed significantly on postinjury despondency; expressions of shame, apathy, and hopelessness; and preinjury family disruption (p less than .01). They also differed on alcohol abuse, active involvement in the injury, preinjury depression or despondency, destructive behavior, and one aspect of etiology (p less than .05). Discriminant analysis yielded a predictive model that correctly classified 81% of the suicide group and 79% of the control group. Many of the demographic predictors identified in this study are similar to those reported in the scientific literature. However, when combined with specific behavioral characteristics manifested during rehabilitation, they comprise an array of variables that permits development of a clinical model for predicting suicide among persons with spinal cord injuries.

Adolescent↗

Glottic and tracheal stenosis in spinal cord injured patients.

Between 1965 and 1985, 47 cases of glottic and/or tracheal stenosis were diagnosed at the Rocky Mountain Regional Spinal Cord Injury System. A retrospective review of medical records identified associated injuries, pulmonary and other medical complications in this patient population. Radiographic and endoscopic reviews utilised a grading system to classify the severity of stenosis. The clinical symptoms of stenosis were multiple, including dysphonia, aspiration, dysphagia, odynophagia, dyspnea and excessive secretions. The wide spectrum of treatment modalities included endoscopy with excision and/or dilation, general medical management, steroids, radiation therapy, intubation, stent insertion and surgical repair of the stenotic area. Outcome status was reviewed and suggestions provided for the early diagnosis and treatment of this potentially life-threatening condition.

Adult↗