TRAUMATIC BRAIN INJURY (TBI) is a major public health concern, leading to high personal and social costs of healthcare and public health spending.1,2 Many patients experience long-term physical, cognitive, and behavioral disabilities, placing an enormous burden on families and caregivers.3 Globally, approximately 10 million people are affected annually by TBI, and these numbers are likely underestimates, given that many injuries are treated outside of hospital settings or are unreported.4 In the United States, a recent report stated that approximately 3.5 million people received a diagnosis of TBI in 2009.5 Although TBI is more common than breast cancer, human immunodeficiency virus/acquired immunodeficiency syndrome, spinal cord injury, and multiple sclerosis combined, there is a paucity of research on health service utilization for this condition across the continuum of care internationally, particularly from a population-based perspective.6–96–96–96–9 This is particularly true for care settings outside of acute care and inpatient rehabilitation such as inpatient mental health, home care, nursing homes, and complex continuing care.
There have been some studies of TBI in nursing home settings. An American investigation based in Colorado described the prevalence of TBI in the nursing home population and compared residents with or without TBI, particularly focusing on residents without dementia. There were key differences between the residents with and without TBI—for example, residents with TBI were more likely to be middle-aged and male—and these had implications for staffing, care, and social aspects in the nursing homes.10 With respect to the activity of daily living (ADL) capabilities, a large proportion of those with TBI had severe difficulty performing locomotion on the unit (37.7%), eating (33.6%), toileting (21.8%), and completing personal hygiene (13.4%).10 A previous study in Ontario, Canada, of young adults with TBI in long-term care showed that an even higher proportion of the residents with TBI had difficulties with personal care and needed assistance with eating (94.2%), toileting (92.2%), and dressing (85.1%).11 Furthermore, a large percentage of young residents with TBI demonstrated behaviors such as aggression (57.8%), wandering (24.7%), and substance abuse (12.3%).11 Another study identified aggressive behavior, delirium, and anxiety symptoms among TBI survivors in residential settings.12
Canadian researchers and clinicians have made progress in developing a national profile of the population with TBI.6 Currently, most available population-based investigations that focus on patients with TBI in Canada are based primarily on data from hospitals.6,13 Some recent publications also document the profile of patients with TBI in inpatient rehabilitation settings14 and long-term care settings in Ontario.11 Providing a profile of this population across different settings using large samples and comparing this population with other diagnostic groups would provide valuable information for large-scale planning of resources to meet the needs of patients. Relatively few studies have explored characteristics and outcomes of people living with the effects of TBI in publicly insured non–acute care settings.
To address this gap in information, a research project titled Innovations in Data, Evidence and Applications for Persons With Neurological Conditions was funded by the Public Health Agency of Canada (PHAC ideas PNC) (http://interraicanada.uwaterloo.ca/iPNC/). The project uses assessment information collected in long-term care, home care, and institutional mental health settings. Collection of these data is mandated in specific jurisdictions in Canada, and data are linked with health service utilization information collected by the Canadian Institute for Health Information. The current report focuses on a cross-sectional profile of people with TBI, comparing characteristics across 4 settings: complex continuing care, nursing home, home care, and institutional mental health. The assessments share certain elements that permit comparison across sectors. This information, gathered from provincial healthcare settings across Canada, provides a unique opportunity to compare comprehensive health demographic profiles and health services used by people with TBI receiving supports in the 4 different care settings. Further comparisons are made with patients with and without a neurological condition (Alzheimer disease and other dementias, Parkinson disease, multiple sclerosis, epilepsy, Huntington disease, spinal cord injury, amyotrophic lateral sclerosis, muscular dystrophy, and cerebral palsy).
The aims of this study were to (1) document the characteristics of individuals with TBI within inpatient mental health, home care, nursing home, and complex continuing care locations in Canada and (2) compare those characteristics with similarly housed individuals divided into 2 comparison groups, a group with nonneurological conditions and a group with other neurological conditions.
MATERIALS AND METHODS
This cross-sectional study used the information from a combination of resident assessment instruments (termed interRAI) used in 4 different Canadian care settings: home care (interRAI-HC), mental health (interRAI-MH), and nursing home and complex continuing care facilities (RAI Minimum Data Set [MDS] 2.0). Each assessment record in the data file was completed by trained healthcare professionals instructed to follow the guidelines and using all sources of information available, including direct observation of the person, interviews with family and healthcare providers, and review of medical records. All functional and behavioral items represent performance over a prescribed observation period: 3 days for home care and 7 days for MDS 2.0. Data linkages and database construction were part of the larger PHAC ideas PNC project, which was granted ethics approval from the University of Waterloo and the University of Toronto.
Clients in home care who are expected to receive services for 60 days or more are assessed with the RAI-HC. The assessment information is uploaded to the Ontario Association of Community Care Access Centres (OACCAC) home care database. interRAI-MH assessments from the Ontario Mental Health Reporting System provided data from mental health settings. Data on these 2 settings are from Ontario alone and include data on all Ontario clients in longer-term home care assessed between January 1, 2002, and December 31, 2010, and on all people admitted to inpatient mental health facilities between October 1, 2005, and March 31, 2010, in Ontario. Nursing home and complex continuing care assessments were gathered using RAI MDS 2.0 through the Continuing Care Reporting System from various Canadian provinces until March 31, 2011. All people admitted to nursing homes or complex continuing care facilities must receive an MDS assessment in jurisdictions that have mandated the assessment. Nursing home assessments were available from the following provinces by year with percent contribution of data: Nova Scotia (0.9%) and Ontario (74%) since 2003, and from British Columbia since 2006 (8.9%). Nursing home data were gathered from Manitoba (5.3%), Newfoundland and Labrador (0.4%), Saskatchewan (10.2%), and Yukon Territory (0.1%) since 2008. Complex continuing care assessments from Ontario since April 10, 1996, and from Manitoba since 2008 were also included, with 99.8% of assessments coming from Ontario.
Participants included in the study were 18 years and older with at least one interRAI assessment available who were enrolled in mental health, home care, nursing home, or complex continuing care facilities. Only the most recent assessment from each client was included in the study. The neurological conditions of interest in the interRAI PHAC project were Alzheimer disease and other dementias, Parkinson disease, multiple sclerosis, epilepsy, TBI, Huntington disease, spinal cord injury, amyotrophic lateral sclerosis, muscular dystrophy, and cerebral palsy. Cases with the targeted neurological conditions were identified through a pick list on the assessment forms as well as free text or International Classification of Disease codes in open-ended diagnostic items.
Three groups were identified within each setting. The TBI group included all cases identified by a check box for TBI in the OACCAC and the Continuing Care Reporting System or by a TBI International Classification of Disease, Tenth Revision, code listed in the Ontario Mental Health Reporting System. The OACCAC check box term was “head trauma,” which was considered a legacy term for TBI. The “any other neurological conditions” group included all people without TBI, but who had been identified with any of the other PHAC neurological conditions, or stroke. The “nonneurological” group included all people without any of the 10 PHAC neurological conditions or stroke.
The following variables were used in the study: demographic and clinical characteristics (age, sex, marital status, Changes in Health, End-stage disease and Symptoms and Signs [CHESS] scale,* diagnoses, pain scale, length of stay, and bladder and bowel incontinence); functional characteristics (ADL hierarchy scale, instrumental ADL [IADL] scale, cognitive performance scale, Deafblind Severity Index, and delirium and aggressive behavior); mood and behavior; and treatment and medication. See the Supplemental Digital Content (available at: http://links.lww.com/JHTR/A132) for detailed descriptions of the main measures.
Frequency distributions were generated for categorical data using Statistical Analysis Software (SAS) v9.0 software. Chi-square analyses were used to compare TBI patients with the referent groups across care settings. Results were evaluated after the Bonferroni correction for multiple comparisons.
The distribution of people with a TBI diagnosis (n = 10 878) varied by care setting: 1.6% were in mental health, 56.6% in home care, 17.1% in nursing homes, and 24.7% in complex continuing care. In mental health settings, less than 1% of the mental health inpatient population had a TBI diagnosis. Although most people with TBI were in home care settings, the proportion of people with a TBI code residing in home care was only 1.2%. The following sections provide highlights of the profile of survivors of TBI in relation to the comparison groups. With very few exceptions, all comparisons were significant at the P < .0002 level established as a criterion after the Bonferroni correction.
The highest percentage of males with TBI was in mental health settings (78.5%), followed by complex continuing care and nursing home settings. However, the sex distribution in the home care setting was more equitable (51.1%) (see Table 1). Overall, a higher proportion of people with TBI than with other conditions were younger than 65 years; however, there were substantial proportions of people with TBI aged 65 years and older in home care (57.2%), nursing homes (60.7%), and complex continuing care (50.5%).
Marital status is often an indicator of social support. Males with TBI in nursing homes (18.6%), complex continuing care (29.7%), and home care (47.4%) were less likely to be married than males in the neurological and nonneurological comparison groups in those settings. In general, all nursing home residents were less likely to be married.
People with TBI were more likely than those in the other 2 groups to have psychiatric comorbidities; this was most evident in the home care setting, where 38.2% of the TBI group versus 22.9% of the nonneurological comparison group had psychiatric comorbidities. In nursing homes and complex continuing care, more patients with TBI and other neurological conditions had psychiatric comorbidities than those in the nonneurological group.
Using the CHESS scale to assess instability in health based on changes in health, end-stage disease, and various medical signs and symptoms, the results show that people with TBI were least likely overall to exhibit moderate to high health instability in the mental health setting (4.5%). The highest percentage of patients with TBI with high CHESS scores was in complex continuing care settings (23.8%) (see Table 1), but the proportion was significantly lower than either of the comparison groups within complex continuing care (35.6% for the other neurological conditions group and 42.1% for the nonneurological conditions group).
Patients in all diagnostic categories across all care settings experienced no pain to mild or moderate pain. A greater percentage of people with TBI receiving home care had a high level of pain severity, with a score of 3 (15.9%), than those in complex continuing care, mental health, or nursing home settings (see Table 1). In nursing homes and complex continuing care, patients in the nonneurological comparison group were more likely than patients with TBI to have severe pain.
People with TBI were more likely to encounter trouble swallowing than residents in the other groups. This is especially evident in complex continuing care, where 48.9% had difficulty swallowing compared with 18.6% in the nonneurological comparison group (see Table 1). Approximately half the residents with TBI in nursing homes and complex continuing care experienced occasional or frequent bowel incontinence, and almost three-fourths of survivors of TBI in nursing homes experienced frequent bladder incontinence. Patients with other neurological conditions similarly experienced bowel and bladder incontinence in these settings. In the home care and, strikingly, in mental health settings, more patients with other neurological conditions experienced bladder and bowel incontinence than those in the other groups. The presence of pressure ulcers was not significantly different across diagnostic groups in complex continuing care.
On the basis of the cognitive performance scale, the TBI group had poorer cognitive function than the nonneurological comparison group in each setting. Approximately 80% of people with TBI in home care and 93% in nursing homes and complex continuing care had some degree of cognitive deficit. A greater proportion of residents in the TBI group than those in the nonneurological comparison group had severe cognitive impairments (see Table 2). This trend was especially evident in nursing homes (33.2%) and complex continuing care (45.1%), where the proportion of severe cognitive impairment among the TBI group was at least 3 times larger than that among the nonneurological comparison group.
The ability of residents with TBI to perform ADL varied significantly across the 4 care settings. The TBI group in the mental health setting represented the highest proportion of residents rated as independent in the 4 ADL tasks (79.1%). In contrast, the majority of people with TBI living in nursing homes (79.5%) and complex continuing care (79.1%) had severe ADL impairment, with an ADL hierarchy score of 3 or more (see Table 2); an equal proportion or more of the patients with other neurological conditions likewise had severe ADL impairment in these settings. In the mental health setting, more than half (55.9%) of the clients with TBI experienced difficulty performing IADL tasks, although nearly 80% had low ADL impairment.
The mobility indicators show that fewer residents with TBI in nursing home (19.4%) and complex continuing care (10.9%) settings were able to walk independently than residents with TBI in mental health (88.7%) and home care (33%) settings. The proportion of people with TBI who had fallen within the last 90 days ranged from 11.9% in mental health to 45.4% in home care settings (see Table 2). More people with TBI in home care (45.4%) had a recent fall than residents in the nonneurological or other neurological groups. One-third of those with TBI receiving home care walked independently, and 65% had an unsteady gait. These proportions suggest that greater mobility in home care can simultaneously increase the opportunities for falling and the rate of falls.
People with TBI and those with other neurological conditions encountered difficulty communicating to some degree across settings. Although fewer survivors of TBI in mental health and home care settings experienced trouble with communication than those in the other neurological conditions group, the proportion was still substantially higher than that among the nonneurological comparison group. More than one-third of the survivors of TBI living in nursing homes and complex continuing care facilities had communication difficulties.
Mood and behavior
Among patients in all diagnostic categories, depressive symptoms were most common in the mental health setting, followed by nursing homes; a similar trend was found with anxiety symptoms (see Table 3). Approximately half of the patients in the TBI group residing in nursing homes (54.4%) and complex continuing care (45.9%) displayed aggressive behavior. In both settings, a considerably higher percentage of patients with TBI and those with other neurological conditions displayed aggressive behavior than patients with nonneurological conditions.
Treatment and medication
All residents in complex continuing care used more resources than those in the other 3 care settings. Across all diagnostic groups, other physician visits, occupational and physical therapy, wound care, and oxygen/respiratory therapy were used by more residents in this setting than in the others (see Table 4).
Rehabilitation services were most common in complex continuing care. Physician visits, physical therapy, and occupational therapy were the most frequently used rehabilitation resources. Slightly more patients with TBI received physical and occupational therapy services than those in the other 2 groups; speech-language pathology services were used most by patients with TBI and least by patients with nonneurological conditions. There was no significant difference in recreational therapy and social work/psychologist use in complex continuing care settings.
Personal support/homemaking services were used by a large percentage of people in each diagnostic category in a home care setting. More people with TBI used the other rehabilitation resources—physical, occupational, and speech-language therapy, social worker/psychologist—than people in the other categories; however, slightly more people with nonneurological conditions (36.7%) than those with a TBI (35.1%) were visited by a physician.
In the nursing home setting, more than half of residents across each diagnostic group had other physician visits, with residents with nonneurological conditions receiving these services most (66.8%) and those with TBI least (57.1%). Residents with TBI made less use of physical therapy services than those in the other groups; still, more than half of the residents in each group received physical therapy. Less than 10% of all residents made use of occupational therapy services, but more residents with TBI did so (7.3%) than those with nonneurological conditions (4.8%) and those with other neurological conditions (4.1%). Also, more residents with TBI received recreation therapy than any others. There was no significant difference in social work/psychologist use in nursing home settings after correction.
Not surprisingly, psychiatric services were used by the vast majority of patients in each group (ranging from nearly 90% among the other neurological conditions group to 95% among the TBI group) in the mental health setting. Patients with TBI made more use of social work and psychology services as well but had other physician visits and recreational therapy less often than those in the other groups.
Wound care services were used more than any other medical interventions across all care settings except the mental health setting, where no data on medical interventions were available. Wound care services were used most in complex continuing care, followed by home care; in complex continuing care, slightly more people in the nonneurological group (39.5%) than in the TBI group (38%) had wound care; in the home care setting, 27% of both groups received would care compared with 24% of people with other neurological conditions. Oxygen/respiratory therapy was the next most used service, primarily in complex continuing care by patients with nonneurological conditions (27.4%). Fewer patients with TBI and other neurological conditions used this service (18.7% and 19.4%, respectively); a similar trend occurred in nursing homes and home care, albeit at considerably lower percentages. There was no significant difference in respirator use in complex continuing care settings after correction.
In both nursing home and complex continuing care settings, physical restraint use among residents with TBI was slightly higher than among the other neurological conditions group and considerably higher than among the nonneurological comparison group. Restraint use in mental health settings was more prevalent among residents with TBI (9%) than those in the nonneurological group (4.9%), but less so than residents with any other neurological conditions (21.2%).
Antidepressants were the most commonly used psychotropic drugs across care settings where these data were available. Psychotropic drugs were most commonly given to residents with TBI and other neurological conditions in nursing homes, with 47.5% and 47.3% taking antidepressants and 41.5% and 36.7%, respectively, taking antipsychotics. The prevalence of antipsychotic use was higher in nursing homes than in the other settings; anxiolytics were used more in complex continuing care than elsewhere.
Traumatic brain injury can be a tremendous burden on patients, families, caregivers, and the healthcare system.15 Developing interventions that satisfy the long-term or lifelong physical, cognitive, and behavioral needs of people with TBI requires a comprehensive understanding of their multidimensional characteristics. The primary purposes of this study were (1) to document the characteristics of residents with TBI within mental health, home care, nursing home, and complex continuing care settings in Canada and (2) to compare those characteristics with similarly housed individuals in 2 comparison groups: patients with nonneurological conditions and those with other neurological conditions. We also comment on profiles of patients with TBI across settings.
Using the comprehensive interRAI data from the 4 different healthcare settings, we identified demographic, health, and service characteristics unique to persons with TBI within various care settings and how they compare with those of other diagnostic groups. Among care settings, the profiles vary significantly across items. The advantage of this study was its ability to capture information across multiple care settings and perform generalizable comparisons using rigorously tested interRAI assessment tools.16,17 The availability of mandated interRAI assessments provided an opportunity to use existing data to examine all patients in those settings in Canada. The instruments are used internationally including in the United States, Europe, Asia, New Zealand, and Australia. Although the data were initially used for clinical decision making and care planning, the computerized assessments serve multiple functions including supporting resource allocation, quality performance measurement, policy-making tasks, and providing researchers with assessment data on rare and complex conditions that are amenable to clinical trials. The study provided a profile consistent with studies conducted elsewhere,10,11,14,18 thus strengthening our findings, and presents the interRAI instruments as possible tools for monitoring outcomes of people with TBI. The assessments could supplement information for future prospective studies or could be linked with surveillance registries.
Falls were a common occurrence among people with TBI receiving home care: almost half of this population sustained a fall within the last 90 days. This is a serious problem since falls are one of the leading causes of TBI, and having a previous fall increases the risk for a subsequent fall.19,20 Approximately one-third of home care clients with TBI and a quarter of patients with other neurological conditions walked independently, but 65.1% in both groups reported unsteady gait. These findings suggest that people with TBI receiving home care are relatively mobile but are at risk for falling. They also raise the concern that people with TBI in home care may not receive enough rehabilitation services to increase their strength, balance, and mobility or may have environmental obstacles that increase the risk of falling. The lower use of or access to rehabilitation services is evident in our findings; for instance, occupational therapy is used by more people with TBI than by people in the other groups in a home care setting (16.2%), but the rate for people with TBI is considerably lower here than within complex continuing care (50.7%) and mental health (24.3%) settings. Occupational therapy services are used less only in nursing homes. Our findings are consistent with other literature indicating that home care expenditures for people with TBI are lower than within other post–acute care settings.1 The majority of people with TBI and other neurological conditions in nursing homes and complex continuing care used wheelchairs, and only 10% to 19% could walk independently.
Although the impairments associated with TBI significantly increase the risk of falling, research on fall prevention, fall risk, and common causes of falls is scarce but growing. Frisina et al21 found a variation in the prevalence of falls and injury based on time of day, estimating that 40% of rehabilitation patients with brain injury (not including stroke) fall during the day (7 AM-3 PM), 12% during the evening (3 PM-11 PM), and 48% at night (11 PM-7 AM). The majority of the falls occurred among male patients in their late 60s whose average length of stay in rehabilitation was 20 days. These results are consistent with previous studies examining the relation between cognitive impairment and length of stay in extended care and rehabilitation settings. These studies suggest that patients with neurological conditions and brain injuries require more assistance and may need significant time and therapy to achieve functional independence.22 Providing formal caregivers in institutional settings with adequate information and better training to prevent falls among patients with TBI is of critical importance.
Our findings resonate with previous literature showing that patients with TBI are younger and more likely to be male in most healthcare settings, supporting the validity of this work. Our findings also indicate a population of younger patients with TBI in institutionalized settings such as nursing homes, which has been questioned as an inappropriate care setting for young residents.11,12,23 Also of note, residents with TBI in nursing homes and home care had the highest psychotropic drug use in relation to other conditions; this warrants further exploration.
To our knowledge, there is virtually no prior research focused on the poorer physical or emotional health of patients with TBI within mental health institutional facilities, despite the increased risk for lifelong psychiatric diagnosis after brain trauma.24 Although patients with TBI were less cognitively impaired than those with other neurological conditions in mental health settings, they required more help with ADL and IADL than those in the nonneurological population. Historically, there has been little attempt to evaluate the impact on health outcomes for patients with TBI of providing extended care. In addition, the characterization of TBI has not been consistently applied throughout the literature and generally tends to differ across specialties and circumstances; as a result, many individuals with mild TBIs may be undiagnosed. It is therefore important to understand the dynamics of TBI in order to improve the instruments used to assess and diagnose this condition.
Strengths and limitations
To our knowledge, this is the first population-based study of patients with TBI across mental health, long stay home care, complex continuing care, and long-stay nursing home settings in Canada. A very large sample from validated national administrative databases is a major strength of the study. The cross-sectional design provides a profile of the TBI population in diverse settings. Data were collected from participating Canadian provinces using the interRAI assessment tools. Although to what extent data from Canada are generalizable to other countries is not known, this article provides a basis for international comparisons. An analysis of geographic variability was beyond the scope of the study. Most of our data, however, were from 1 province.
In addition, few validation studies focused exclusively on TBI in the clinical population. Historically, studies using administrative data have found lower sensitivity.25,26 Low sensitivity from the diagnostic check box items in interRAI data may be considered too vague, leading to underreporting. Hence, it is likely that TBI is underdiagnosed in the study's population, particularly among older adults, where communication limitations resulting from TBI may affect reporting of symptoms. Problems with communication, in fact, were commonly reported across sites among those with TBI. Contrarily, compared with acute care records, the diagnosis validity showed high specificity. This implies that individuals reported as having TBI do indeed have a high probability of having a TBI.
We recognize that we did not have detailed information on initial severity of TBI across settings such as that based on the Glasgow Coma Scale. We also acknowledge that we have not discussed all the rich data we have provided. At the same time, we consider it important to have a broad view of patient profiles across settings to provide necessary data to support decision and policy makers in planning for care of patients with TBI in relation to other patient populations.
This research showed the value of cross-sector comparisons that highlight the differences in patients with TBI across care settings; this study can inform resource planning for a range of diagnoses, TBI in particular. It also highlighted the value of the interRAI instruments for providing an integrated multisector view of populations who receive services across the full continuum of care.
The results of this study revealed that people with TBI continue to have functional, cognitive, and behavioral problems in long-stay settings and in mental health institutions and that rehabilitation services are not being used effectively in home care. These clinical and behavioral complexities require health policies advocating for tailored and more attentive care for people with TBI. Improving the health of people with TBI requires moving beyond generalized care intervention methods and focusing more on training caregivers to provide for their needs across care settings. Further evaluation of the impact on outcomes of providing care services would strengthen the case for developing suitable and efficacious care strategies. This research merits further attention in the form of a longitudinal study that clearly assesses differential characteristics of the health outcomes of patients with TBI in the 4 different care settings.
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* The MDS-CHESS score is a composite measure addressing changes in health, end-stage disease, and symptoms and signs of medical problems.