Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits.

STUDY DESIGN: Cross-sectional, focus group. OBJECTIVES: To explore positive and negative issues reported by family caregivers of people with spinal cord injury (SCI) to develop a relevant and valid tool to assess caregiver distress and benefit for this unique population. METHODS: Seventy-three family caregivers of people with SCI participated in 16 focus groups. We audio-recorded all focus group discussions and transcribed the recordings verbatim. Qualitative analysis of the transcripts was performed to identify major themes and subthemes relating to family caregiving activities. RESULTS: Positive themes were disproportionately limited in comparison with negative themes. Positives included changes in self-awareness, enhanced family cohesiveness and feeling appreciated. Negative themes included physical and emotional strain, dissatisfaction with hired carers and strain on family relationships. Health-related themes included fatigue and lack of sleep. Caregivers identified sources of strength that helped them manage stresses including faith and support from friends and co-workers. CONCLUSION: The numerous themes help lay the groundwork to develop a valid and reliable assessment tool to assist health-care providers in treatment planning and the provision of long-term assistance to people with SCI by enhancing areas of strengths and addressing factors that contribute to burden and distress for family caregivers.

Return to work and school: a model mentoring program for youth and young adults with spinal cord injury.

STUDY DESIGN: This is a prospective study. OBJECTIVES: Young individuals with spinal cord injury (SCI) need support to actively participate in the community after their injuries. The 'Back on Track' mentoring program was developed to match mentees with SCI with mentors to assist with post-injury adjustment. The objectives of this study were to improve the percentage of youth and young adults with SCI, who access post-secondary education or employment opportunities and to improve quality of life. SETTING: This study had a community-based setting. METHODS: Each mentee with SCI was matched with a community-based mentor, with or without a disability. The mentoring relationship was planned for 2 years. Participants were evaluated with standardized questionnaires at intake, at the time of post-secondary education or employment entry and 4 months post entry. RESULTS: In total, 39 individuals with SCI, age 16-26 years, were enrolled. Average age of mentees was 19.8 years (s.d.=3.0). In total, 29 participants were matched with mentors, and 10 participants (34%) completed the program, with seven (24%) returning to school, two (6.9%) returning to work and one individual (3.4%) attending school part time. CONCLUSION: Although multiple barriers to success occurred, this program demonstrated that it could assist the youth and young adults with SCI to obtain post-secondary education and employment. This type of support system should be encouraged in order to improve the quality and satisfaction of life for young adults with disabilities.

Charges and lengths of stay for acute and inpatient rehabilitation treatment of traumatic brain injury 1990-1996.

This investigation evaluated yearly trends in charges and lengths of stay for patients with brain injury in acute care and rehabilitation settings over a 7 year period. Data was collected from 800 consecutive patients enrolled in four NIDRR Model Systems Traumatic Brain Injury programmes. Acute care daily charges showed almost routine increases, averaging nearly $550 per year. Conversely, lengths of stay generally showed a downward trend, with annual reductions averaging 2.25 days. Admission lengths of stay averaged 22-29 days between 1990-1994. Admissions averaged less than 20 days beginning in 1995, with the 1996 average of 16 days, nearly half that of the 1993 average. Between 1990-1996, average daily rehabilitation charges increased each year, with the rise averaging $83 or 7%. The rise in daily rehabilitation charges was offset by corresponding decreases in lengths of stay averaging 3.65 days or 8% annually. Increases in daily charges for brain injury rehabilitation care were roughly comparable to those for general medical care prices. However, the rate of change in acute care charges was substantially greater, with annual increases averaging 10% more than national medical care prices. The steady downward trend in lengths of stay raises serious concerns about the future availability of health care services to persons with brain injury.

Return to work after brain injury: a self-directed approach.

For many, returning to work after a brain injury is an extremely difficult task. Many factors influence a person's decision whether or not to work. While some people with brain injury are excited to return to their old jobs, others are afraid of the physical, emotional, and financial consequences of returning to work, and some just do not want to work at all. The following manuscript provides a framework for persons with brain injury to address concerns regarding returning to work and alternatives to living productively. There are a number of ideas discussed within the framework of a self-guided therapeutic return to work program. Clinicians are encouraged to use the information provided to facilitate return to work discussions with their clients with brain injury and to adapt as necessary for use with persons with other neurological disabilities.

Long-term life quality and family needs after traumatic brain injury.

OBJECTIVES: This investigation assessed the life quality and long-term family needs of caregivers of persons with brain injury. DESIGN: Respondents completed the Virginia Traumatic Brain Injury Family Needs Assessment Survey. SETTING: Community-based sample. PARTICIPANTS: Respondents included 57 caregivers of persons with traumatic brain injury who were at least 4 years after injury and who resided in Virginia. Respondents ranged in age from 19 to 82 years and were primarily women and Caucasian. OUTCOME MEASURES: The Family Needs Questionnaire (FNQ) and quality of life questions. RESULTS: Results indicate diminished life quality after injury. With regard to family needs, Health Information (51.43%) and Involvement with Care (47.93%) needs were most often rated as met. Instrumental Support (31.52%) and Professional Support (28.38%) needs were most often rated as not met. CONCLUSIONS: Family needs and support systems for those needs change over time. This investigation provides evidence that unmet family needs extend well beyond the acute setting and that caregiver life quality diminishes over time. The importance of appreciating long-term family needs and other life quality issues should not be underestimated.

Pre-injury crime, substance abuse, and neurobehavioural functioning after traumatic brain injury.

There is limited information regarding the effects of pre-injury history of arrest or history of substance use on neurobehavioural functioning after brain injury. The current study included 211 patients with traumatic brain injury, who were seen for a follow-up neuropsychological evaluation in an outpatient setting. An effort was made to distinguish between (1) patients with a history of pre-injury arrests and patients without a history of pre-injury arrests, (2) patients classified as substance abusers and non-abusers, and (3) patients with and without a history of pre-injury illicit drug use on the basis of demographic characteristics, injury characteristics, and neurobehavioural functioning. Results indicate significant differences between patients with a history of pre-injury arrests and patients without a history of pre-injury arrests in terms of demographic and injury characteristics. Differences were also noted between persons classified as substance abusers and non-abusers in terms of demographic and injury characteristics, and neurobehavioural functioning. Clinical implications and future research are discussed.

Age-related differences in length of stays, hospitalization costs, and outcomes for an injury-matched sample of adults with paraplegia.

OBJECTIVE: To investigate the effects of age at injury on neurological and functional outcomes and hospitalization length of stays and charges following spinal cord injuries resulting in paraplegia. METHODS: Subjects were 180 adults with paraplegia who were assessed in acute care and inpatient rehabilitation as part of the National Institute on Disability and Rehabilitation Research Model Spinal Cord Injury Systems. Age differences were examined by separating the sample into 3 age groups (18-39, 40-59, and 60+ years). A matched block design was used to control for injury characteristics. Cramer's statistic was used to identify age-related differences in qualitative variables; 3 x 5 one-way analysis of variance identified the main effects of age on quantitative variables. Tukey post hoc tests were performed to identify differences between age and age x injury characteristic variable levels. OUTCOME AND TREATMENT MEASURES: American Spinal Injury Association motor index scores, Functional Independence Measure (FIM) motor scores, discharge to private residence ratios, and hospitalization length of stays and charges were outcome and treatment measures. RESULTS: Age-related differences were found for etiology and health care plan, as well as for preinjury marital status, education level, and employment status. The main effects of age at injury were found for the following treatment and outcome measures: rehabilitation length of stays, FIM motor scores at rehabilitation discharge, FIM motor improvement (change), and FIM motor daily improvement (efficiency). Tukey post hoc tests revealed that older patients had longer rehabilitation stays, lower rehabilitation discharge FIM motor scores, and showed less improvement compared with younger and middle-aged injury-matched patients. No age-related differences were found in rates of discharge disposition. CONCLUSIONS: Using a matched block design procedure, older patients are discharged with lower levels of functional independence and show lower levels of improvement despite longer rehabilitation stays when compared with younger patients. Older patients' neurological recovery appears equivocal to younger patients' recovery. In contrast to findings with a matched tetraplegia sample, older and younger patients with paraplegia are discharged to private residences at similar rates.

Functional outcome for African Americans and Hispanics treated at a traumatic brain injury model systems centre.

OBJECTIVE: To describe the demographics, incidence and functional outcome for African Americans and Hispanics treated at a traumatic brain injury (TBI) model systems centre. DESIGN: Retrospective data analysis of patients admitted to an acute inpatient rehabilitation national TBI model systems centre. SETTING: A tertiary care university medical centre participating in the NIDRR Traumatic Brain Injury Model Systems project. SUBJECTS: Eighty-seven patients with TBI admitted to a Model Systems acute intensive interdisciplinary rehabilitation setting between 1989-1999. Information was extracted from the National TBI Model Systems data base for demographics such as age, race, education, gender, marital and employment status, sponsorship, injury aetiology and severity. OUTCOME MEASURES: Functional outcome was determined using the Functional Independence Measure (FIM), and the Disability Rating Scale (DRS) at the time of admission and discharge. RESULTS: Descriptive statistics were completed using SPSS. African American (94.3%) and Hispanic (5.7%) patients were injured most often as a result of motor vehicle accidents (48.8%). Males comprised 86.2% of this population, which had an average age of 34.5 years (SD = 13.1). On admission, average GCS score was 7.8 (SD = 3.6), average DRS was 13.5 (SD = 5.8), and average FIM total score was 49.8 (SD = 26.5). Average length of unconsciousness was 5.2 days (SD = 27.9), while average length of post-traumatic amnesia was 41.9 days (SD = 59.3). At the time of injury, 78.2% of the patients were not married. The majority of patients (97.7%) had private residences and 88.5% returned to their original home. Most patients had at least a high school education or passed a high school equivalent exam (49.4%) and were employed (70.1%) at the time of injury. Only 7% of the patients had a history of prior TBI. With regard to substance use, only 34.2% of patients reported pre-morbid illicit drug use. However, 50.5% met criteria for heavy or moderate alcohol use rates. Only 35.6% of patients reported a pre-morbid history of arrests, with the average number of arrests equal to 4.5 (SD = 10.2). Within this population, the number of drug or alcohol related arrests was 4.8 (SD = 13.5). CONCLUSIONS: Unmarried African American males, with an average age of 35 years, predominated at this institution. The primary mechanism of injury was motor vehicle accidents. The majority of patients had, at least, a high school education or passed an equivalency exam, were employed at the time of their injury and were discharged to their prior private residence. While half of the patients met criteria for moderate-to-heavy alcohol consumption, only one-third of the patients reported a history of pre-morbid illicit drug use. This descriptive analysis supports the need for further investigation of minority populations that sustain TBI and will enhance the accuracy of implications that minority status may have on functional outcome.

Spinal cord injury "outliers": an analysis of etiology, outcomes, and length of stay.

Spinal cord injury (SCI) requires significant and expensive medical intervention, including prolonged hospitalization and intense in-patient treatment and rehabilitation. Development of predictive models for lengths of stay in spinal cord injury patients provides a method for early prediction of patients that will require greater care, incur greater costs, and need more intensive medical and rehabilitative services. Early identification of SCI patients at high risk of extended lengths of stay will also allow physicians to treat those patients more aggressively, and permit families, as well as sponsors, to estimate the costs of long-term care. Results of a forward-conditional stepwise multiple logistic regression indicate that the model including age at injury, number of days to rehabilitation admission, number of pressure ulcers, number of medical complications, level of injury, and sponsor of initial hospitalization significantly (chi2 = 220.063, p < 0.001) predicts outliers in terms of rehabilitation length of stay. Overall, the percentage of persons who were correctly classified by the multivariate model was 96.92% (chi2 = 66.85, p < 0.001). The correct prediction rate for outliers was 46% and nonoutliers 97%. This model provides a tool that can be used by health providers, sponsors and patients to aid in the identification of individuals with SCI that may require extended lengths of stay. Today, unfortunately, our health care system is burdened by the heavy influence of economics rather than functional outcome. We maintain that implementation of this model will help to improve care of the SCI patient by early identification of those in need of more extensive resources and improve the economic efficiency needed to provide maximal functional outcome.

A comparative study of outcomes and expenses following tetraplegia and paraplegia.

OBJECTIVE: A study was designed to directly compare individuals with tetraplegia and paraplegia to further explore neurological and functional outcomes and their impact on the expense of rehabilitation when controlling for level of completeness, age at the time of injury, and length of stay. METHODS: A sample was drawn from the National Spinal Cord Injury Database consisting of 2069 individuals, 1005 with paraplegia and 1064 with tetraplegia. RESULTS: Significant demographic differences were found between the 2 groups with regard to age, ethnicity, marital status, and employment status. Significant differences were found between the groups with regard to all individual outcome variables (p < .001) and expenses (p < .05). On average, patients with paraplegic injuries evidenced greater change and efficiency on a functional independence measure than patients with tetraplegia. In contrast, patients with tetraplegia showed greater changes and efficiency with regard to ASIA Motor Index scores. Higher rehabilitation expenses were found for patients with tetraplegia.

Age, outcome, and rehabilitation costs after paraplegia caused by traumatic injury of the thoracic spinal cord, conus medullaris, and cauda equina.

The object of this study was to investigate the relationships of age on neurologic and functional outcome, hospitalization length of stay (LOS), and hospital charges after spinal cord injury (SCI). At 20 medical centers, 2,169 consecutive adult patients with paraplegia SCI were assessed in acute care and inpatient rehabilitation. Outcome and treatment measures included the ASIA motor index score, functional independence measure, discharge to community ratio, LOS, and hospital charges. Age differences were examined by separating the sample into 11 age categories and conducting one-way analyses of variance on treatment, medical expense, and outcome measures that included the Functional Independence Measure (FIM) and ASIA motor index scores. Cramer's statistic was used to derive a chi-square value that indicated whether variables differed significantly in terms of age. Post-hoc Tukey tests were also performed. Age-related differences were found with multiple demographic variables. Significant differences between age categories were found with regard to the following treatment measures: ASIA motor index scores at acute-care admission and at discharge, rehabilitation LOS, inpatient rehabilitation hospitalization charges, total LOS, total hospitalization charges, FIM scores at inpatient rehabilitation admission and discharge, FIM change, and FIM efficiency. In conclusion, in patients with paraplegia, age appears to adversely affect functional outcome, rehabilitation LOS, and hospital costs. However, neurologic recovery as defined by the ASIA motor scores does not appear to be related to age.

Pre-injury substance abuse among persons with brain injury and persons with spinal cord injury.

Alcohol and drug use at the time of injury have been strongly implicated as causal factors of spinal cord injury (SCI) and traumatic brain injury (TBI). Researchers have only begun their efforts to investigate the pre-injury incidence of substance abuse in an effort to identify persons at risk for traumatic injury. No studies have compared brain and spinal cord injury populations. This investigation was based in an urban, level one trauma center federally designated as a model system of comprehensive rehabilitative services for persons with TBI and persons with SCI. Pre-injury patterns of alcohol and illicit drug use were compared among patients with SCI and patients with TBI, matched for age, gender, race, and mechanism of injury (n= 52). In accordance with previous research, participants were primarily young, unmarried, males with at least a high school education. Eighty-one percent of patients with TBI and 96% of patients with SCI reported pre-injury alcohol use. The rate of pre-injury heavy drinking for both groups was alarmingly high. Fifty-seven percent of persons with SCI and 42% of persons with TBI were heavy drinkers. Implications for risk identification, treatment, and future research are discussed.