Kenneth A. Gerhart

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.

Secondary conditions following spinal cord injury in a population-based sample.

This prospective study investigates the frequency of both medical and non-medical complications reported by the population based cohort of SCI survivors reported to the Colorado Spinal Cord Injury Early Notification System (ENS). Persons reported to the ENS between January 1 1986 and December 31 1993, representing the broad spectrum of all severities of spinal cord injury and potential complications, were solicited to participate in comprehensive follow-up interviews at their first, third and fifth year post injury. Hospitalizations of a week or longer were experienced by more than 10% of the participants at each of the three interview years. Similarly, the medical complications of spasticity or pain were reported by more than 25% of the participants, and pressure sores were reported by more than 10% at all three time periods. The chief non-medical complications (conditions) were financial concerns and transportation problems. Although these reported medical and non-medical complications present significant obstacles to be overcome, less than three percent of those surveyed at any of the time periods reported experiencing depression; and only 14% rated their quality of life as being poor.

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.

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.

Identifying environmental factors that influence the outcomes of people with traumatic brain injury.

Objectives:To determine the types of environmental barriers reported by persons with traumatic brain injury (TBI) and to identify the relations between environmental barriers and such components of societal participation as employment, community mobility, social integration, and life satisfaction. Design:Seventy-three persons with TBI who were participating in the TBI Model Systems program at Craig Hospital were surveyed at 1 year, using a new measure of the environment, the Craig Hospital Inventory of Environmental Factors (CHIEF), which rates frequency and impact of 25 barriers. Results:Transportation, the surroundings, government policies, attitudes, and the natural environment were the environmental barriers with the greatest reported impact. Those who were married, older, and unemployed or not in school reported the most barriers overall. Additionally, those reporting a greater impact from environmental barriers also reported lower levels of participation and life satisfaction. Conclusions:Although environmental barriers affect TBI survivors and play a role in their outcomes, their interplay with other, perhaps as yet unidentified, factors requires continued research. CHIEF may be a valuable tool for understanding the environments role in the lives of people with TBI, and identifying the general environmental domains where interventions are needed to reduce their negative impact.

Understanding outcomes based on the post-acute hospitalization pathways followed by persons with traumatic brain injury

Primary objectives: To identify the factors that determine the pathways of care people with traumatic brain injury (TBI) follow after acute care discharge, and to identify differences in outcome based on those pathways. Research design: Telephone survey of a statewide, population-based sample of persons surviving through acute hospitalization for TBI. Methods and procedures: Included were 1059 individuals who: (a) were discharged from acute care in 1996 and 1997; (b) were eligible for inclusion in the statewide, population-based TBI follow-up system, (c) had either a severe TBI or were among a 20% random sample with milder injuries, and (d) consented to participate in a 1-year post-injury follow-up survey. The survey included administration of the Functional Independence Measure (FIM), the Craig Handicap Assessment and Reporting Technique (CHART), the Alertness Behaviour Sub-scale of the Sickness Impact Profile (SIP), and the Health Status Questionnaire (HSQ-12). Medical records for all participants were abstracted for injury severity, pre-injury history (aetiologic and demographic) and discharge disposition data. Data were weighted to represent the population from which the sample was derived prior to analyses. Main outcomes and results: Almost 2/3 of TBI survivors in this population-based sample received no additional services following discharge from the acute care hospital. Six post-acute-hospitalization pathways were identified based on combinations of inpatient rehabilitation, community-based services and long-term care (LTC). In each category--except for the one involving a discharge directly from acute care to home--people with the most severe TBIs were disproportionately over-represented. Older people and people whose care was funded by government payers were over-represented in both care pathways involving LTC, while members of minority groups were under represented. Those who went to LTC had the poorest outcomes, but even those completing rehabilitation had relatively poor outcomes compared with those discharged directly to home. Conclusions: Of concern are the relatively large numbers of people receiving no rehabilitation and other services in all severity categories. Those in LTC--typically older and government funded people--reported the poorest outcomes. Unanswered questions remain relating to the poor perceived quality of life reported by those completing rehabilitation programmes. Further study is also needed to more fully understand the affects of such characteristics as gender, minority status, employment and funding sources on the care pathway that is followed.

Participant-proxy reliability in traumatic brain injury outcome research

Objective: To assess reliability between persons with Traumatic Brain Injury (TBI) and their self-selected proxies. Design: Intraclass Correlation Coefficients were used to assess participant-proxy reliability on the Craig Handicap Assessment and Reporting Technique (CHART), the Community Integration Questionnaire (CIQ), and the Functional Independence Measure (FIM). Setting: Participants had been discharged to the community from inpatient rehabilitation between six months and approximately five years prior to the studys beginning. Participants: 204 persons with moderate to severe TBI and their self-selected proxies. Results: Eighty-seven percent of the items on the three instruments exhibited moderate to high intraclass correlation (ICC), with strongest participant-proxy agreement for questions assessing concrete, observable information. Participant-proxy agreement was poorest when assessing cognitive and money management capacity as well as out-of-home activities. Conclusions: For many types of items, participant-proxy reliability is sufficient to merit the use of proxies in TBI outcome research when the participants are allowed to select their own proxy.

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.

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? Sponsorship: This research was supported by a Rehabilitation Research and Training Center on Aging with Spinal Cord Injury (1993–1997), which was funded by the National Institute on Disability and Rehabilitation Research of the US Department of Education under grant number H133B30040. The opinions contained in this publication are those of the authors and no not necessarily represent those of the US Department of Education.