Role of survey research in assessing rehabilitation outcomes.

Survey research, although often misperceived as superficial and less scientific than other research methodologies, is nonetheless a valid and reliable technique that physiatrists and researchers use to study a range of important rehabilitation outcomes. Surveys are particularly valuable for describing characteristics in large groups--such as the nature and extent of disability within a population--or for learning about outcomes in a given sample. They are the preferred approach for tracking the perceptions of rehabilitation consumers and for obtaining the data that drive service provision, programmatic development, and policy change. On the national, state, and local levels, the authors describe examples of successful survey research efforts, illustrating the types of data obtained, and the usefulness of those data.

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 study's 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.

Thermoregulation in Antarctic fulmarine petrels.

We measured resting metabolic rates at air temperatures between ca. -5 and 30 degrees C in snow petrels (Pagodroma nivea), cape petrels (Daption capense), Antarctic petrels (Thalassoica antarctica), and Antarctic fulmars (Fulmarus glacialoides). We measured seven age classes for each species: adults, and nestlings that were 3, 8, 15, 28, 35, and 42 days old. Basal metabolic rate (BMR) and thermal conductance (C) of adults averaged, respectively, 140% and 100% of values predicted allometrically for nonpasserine birds. Minimum metabolic rates of unfasted nestlings aged 15-42 days averaged, respectively, 97% and 98% of predicted adult BMR in Antarctic petrels and snow petrels, versus 119% and 126% of predicted in Antarctic fulmars and cape petrels. Nestlings of the southerly breeding snow petrel and Antarctic petrel were relatively well insulated compared with nestlings of other high-latitude seabirds. Adult lower critical temperature (T1c) was inversely related to body mass and averaged 9 degrees C lower than predicted allometrically. As nestlings grew, their T1c decreased with increasing body mass from ca. 14 to 22 degrees C (depending upon species) at 3 days of age, to -4 to 8 degrees C when nestlings attained peak mass. Nestling T1c subsequently increased as body mass decreased during pre-fledging weight recession. Nestling T1c was close to mean air temperature from the end of brooding until fledging in the three surface nesting species.

The effect of tidal volumes on the time to wean persons with high tetraplegia from ventilators.

STUDY DESIGN: Retrospective review of patient medical records comparing the outcomes of two groups of individuals with high-level (C3-4) tetraplegia- those with high-volume and those with low-volume mechanical ventilation. OBJECTIVES: To determine if higher volume mechanical ventilation contributes to faster weaning from the ventilator with fewer complications in individuals with ventilator dependent high-level tetraplegia. SETTING: A Model Spinal Injury Center, located in Colorado, USA, which treats patients referred from throughout the Rocky Mountain region as well as other states. METHODS: The medical records of 42 individuals with ventilator dependent C3-4 tetraplegia, admitted consecutively to the Rocky Mountain Regional Spinal Injury System between 1983 and 1993, were reviewed. All had required full-time mechanical ventilation upon admission, but had successfully weaned by discharge. They were divided into two groups that differed with respect to the ventilator tidal volumes used during their treatment and weaning: a large volume group (> 20 mls/kg of body weight) and a smaller volume group (< 20 mls/kg of body weight). RESULTS: Though the two groups were equivalent in neurological level and completeness, muscular function, initial spontaneous vital capacity, the weaning method used (T-piece), and final spontaneous vital capacity, those in the large tidal volume group successfully weaned an average of 21 days faster than the lower tidal volume group (37.6 days vs 58.7 days, P=0.02). They also had significantly less atelectasis (P=0.01) than the lower tidal volume group. CONCLUSION: This research suggests that the use of higher ventilator tidal volumes may speed up the weaning process and lessen respiratory complications. Because of the potential for this to decrease the length and cost of the rehabilitation programs for persons with high-level tetraplegia, further large-scale research is needed to verify these single-center findings.

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?

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.

Evaluating sources of traumatic spinal cord injury surveillance data in Colorado.

The purpose of this study is to evaluate the sources reporting hospitalized spinal cord injury cases to the statewide, population-based surveillance system in Colorado for the year 1994. Three reporting sources were evaluated: clinical contact persons, medical records departments, and a centralized statewide hospital discharge database. Two evaluation strategies were utilized; these include both measures of accuracy and estimates of missed cases. For the latter, capture-recapture techniques were used to estimate the number of hospitalized spinal cord injury cases missed by all three reporting sources. The clinical contact persons reported 84 confirmed cases, missed 80 confirmed cases, and reported 10 cases that were later determined not to have spinal cord injuries, resulting in a sensitivity of 0.51. Medical records departments and the discharge database reported 143 and 147 cases, respectively, missed 21 and 17 confirmed cases, and reported 118 and 69 cases that were later determined not to be cases of hospitalized injuries of the spinal cord, resulting in sensitivities of 0.87 and 0.90. Capture-recapture results indicate all three sources combined missed an estimated 1-5 cases, yielding a total annual incidence rate for hospitalized spinal cord injury ranging from 45.1 to 46.3 per million population.

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.

Utilization and effectiveness of methylprednisolone in a population-based sample of spinal cord injured persons.

The announcement and publication of the second National Acute Spinal Cord Injury Study (NASCIS II) project's findings regarding the role of high dose methylprednisolone in improving neurological outcomes following acute traumatic spinal cord injury generated widespread excitement and interest. To determine the association between this interest and actual use and implementation of the protocol, Colorado's comprehensive population-based spinal cord injury surveillance data were examined. The medical records of 218 SCI survivors injured between May 1, 1990 and December 31, 1991, and of 145 persons spinal cord injured 2 years later, during 1993, were reviewed to determine the rapidity and extent of NASCIS II implementation by Colorado's hospitals, factors associated with use and non-use of the protocol, changing usage trends over time, and the short term neurological outcomes of patients who received the protocol. Clear documentation of the protocol's usage was present for only 46% of the reported patients' medical records in 1990-91, and 61% in 1993. Small, emergency triage facilities were significantly more likely to use the protocol than larger acute care hospitals, and patients with initially incomplete injuries were less likely to receive the drug. There were no significant differences in neurological outcomes, using the Frankel classification system, between those who received the protocol and those who did not. The limitations and implications of these findings are discussed.

Chest tubes, lung entrapment, and failure to wean from the ventilator. Report of three patients with quadriplegia.

The cases of three patients with traumatic quadriplegia who had been treated with chest tubes are described. Each had been injured at a neurologic level that typically allows weaning from the ventilator, yet none was able to clear refractory atelectasis or become ventilator free. Each underwent surgery during which lung adhesions, entrapment, or deformation at the former chest tube site were identified and corrected. Subsequently, each patient cleared his atelectasis and weaned from the ventilator. These cases suggest the importance of ruling out lung deformity in individuals with ventilator-dependent quadriplegia who have had chest tubes and unexpectedly fail to wean.

Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers.

STUDY OBJECTIVES: To measure emergency care providers' attitudes toward quality of life after spinal cord injury (SCI) and to determine if their perceptions influence the care they provide. DESIGN: A closed-ended questionnaire. SETTING AND PARTICIPANTS: Two hundred thirty-three emergency nurses, emergency medicine technicians, emergency medicine residents, and attending physicians at three level I trauma centers were surveyed. Their responses were compared with previously reported quality-of-life ratings of a group of 128 high-level SCI survivors. MEASUREMENTS AND RESULTS: One hundred fifty-three emergency care providers completed the survey (response rate, 63%). Forty-one percent believed that resuscitation efforts after severe SCI are too aggressive, and 28% believed that future quality of life should be a factor in determining the interventions that should be provided. If they sustained severe SCIs themselves, 22% of providers would want nothing done to ensure their survival, and 23% would want pain relief only. Only 18% imagined they would be glad to be alive with a severe SCI, compared with 92% of a true SCI comparison group. Seventeen percent of providers anticipated an average or better quality of life compared with 86% of the actual SCI comparison group. CONCLUSION: The quality of life, self-esteem, and outcomes that emergency health care providers imaging after SCI are considerably more negative than those reported by SCI survivors. Because providers' knowledge and attitudes may affect the care they provide and may influence patients and families struggling with critical treatment decisions, emergency care providers must be aware of outcomes, well-being, and life satisfaction following severe SCI.

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.

Occupational spinal cord injury: demographic and etiologic differences from non-occupational injuries.

Most spinal cord injuries (SCIs) are the result of motor vehicle accidents (MVAs). There are no published reports specifically addressing SCIs that occur in the workplace. We report a cohort survey study examining the frequency and etiology of SCI in the workplace. Through a cooperative program, an evaluation of all SCIs seen in Colorado during a 5 1/2-year period (January 1, 1986 through June 6, 1991) is presented. We report a detailed analysis of specific data of all SCIs occurring in the workplace. There were a total of 566, with 74 (13.1%) due to injuries that occurred during the course of employment. The most common cause of occupational SCI was falls, which occurred in 37 (50%), as compared with only 15.9% of non-occupational SCIs. Only 14 (18.9%) occupational SCIs resulted from MVAs, compared with 59.3% of non-occupational SCIs. Other major etiologies for occupational SCI included being hit by a falling object in 14 individuals (18.9%), gunshot wound in three (4%), skiing in one (1.4%), stabbing in one (1.4%), and other causes in four (5.4%). Construction occupations were over-represented in occupational SCIs with 41.9% of cases as compared with only 6.3% for the non-occupational group. Because of the large percentage of occupational SCIs, efforts should be aimed at educating workers in at-risk occupations to prevent this serious injury.

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.

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.

Health and psychosocial issues of individuals with incomplete and resolving spinal cord injuries.

Longitudinal data and clinical experience indicate that a greater proportion of spinal cord injuries result in incomplete or resolving neurological lesions. Although it has been reported that persons with incomplete injuries enjoy better functional outcomes, routine contacts with these individuals indicate that many experience problems and complications strikingly similar to those with complete spinal cord injuries. Thus, to document the issues and needs of these individuals, data from Colorado's population-based spinal cord injury surveillance program were analyzed. Of 330 persons registered since January 1, 1986, 121 (37%) were found to be minimally disabled (Frankel class D or E). Review of medical records and follow up documentation for these individuals indicated that although over 75% were ambulatory and virtually all were physically independent, more than 80% did report problems in one or more areas: 21% had orthopedic issues and 17% faced additional spinal surgery; 16% reported neurological deterioration or increased spasticity; 25% had pain problems; and 16% had bladder difficulties. Other issues included bowel problems, blood pressure abnormalities, skin breakdown, sexual difficulties, depression, and unemployability. Implications for rehabilitation are discussed in the light of these and other findings.

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.

PIP: In 1984, researchers analyzed data on 231 18-45 year old women with a spinal cord injury who underwent initial rehabilitation at Craig Hospital in Englewood, Colorado to examine sexual issues. More than 50% of the women reported that health workers did not provide them sufficient sexuality information during rehabilitation, but those who underwent rehabilitation after 1977 were more satisfied with it than those before 1977. They tended to be satisfied with the care they received from their physicians after the injury. Most women were comfortable talking about sexuality with family, friends, and/or other women with spinal cord injuries. Some women were concerned with increases in vaginal discharges (53%) and perspiration (27%) after the injury. Clinicians must realize that the needs of women with spinal cord injuries are different than those of men. Spasticity during sexual relations, pregnancy, childbirth, and the postpartum period troubled some women, e.g., it interfered with sexual intercourse in 21% of the women. Yet 2 newborns were addicted to valium which is used to control spasticity. Other issues were self-confidence and lack of spontaneity. Nevertheless 69% of all women were satisfied with sexual experiences. 60% of the women had amenorrhea after their injury and the mean time for menses resumption was 5 months. The preinjury pregnancy rate was 1.3/person compared with only .34 after the injury. Women with incomplete paraplegia had a higher postinjury pregnancy rate than those with complete quadriplegia (.63 vs. .15; p.001). 50% of the 47 women who had full-term infants delivered vaginally. 49% did not use any anesthesia. Pregnancy complications and complications during labor and delivery were bladder and bowel problems, autonomic hyperreflexia, decubitus ulcers, urinary tract infections, edema, anemia, spotting, fatigue, cardiac irregularity, and preeclampsia.

Spinal cord injury outcomes in a population-based sample.

Outcomes and follow-up data from a population-based sample of 358 persons with spinal cord injuries are described. The case fatality rate during hospitalization was less than 4%. Among those who survived, over half exhibited neurologic preservation below the level of vertebral injury at onset. Twenty-four percent of those with thoracolumbar injuries and 36% with cervical injuries experienced additional later neurologic recovery. Ninety-five percent of all survivors were discharged home, and at 2 years post-injury, 48% reported no significant medical or psychosocial problems. Of a subgroup, surveyed, 63% rated their adjustment and 60% rated their quality of life as good or excellent. Overall, the favorable outcome findings of this study support a relatively positive outlook following traumatic spinal cord injury.

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.