In October of 2007, a workshop was held by the National Institute of Neurological Disorders and Stroke to develop a classification system for Traumatic Brain Injury (TBI) designed to direct therapeutic interventions (Saatman et al. 2008). Traditional classification systems have been problematic given the diversity of brain injury needs. This international group of experts emphasized that this work only began to scratch the surface in understanding brain injury care. Nevertheless, a model of the pathway that patients should follow has evolved.
Generally, patients with ABI receive pre-hospital care, acute care (with neurosurgical intervention if necessary), Emergency Room visit, Intensive Care Unit (ICU) management, inpatient rehabilitation, and are then discharged to the community with varying levels of support (Khan et al. 2002). Additional components of this pathway may include cognitive and behavioural rehabilitation programs, community living opportunities, rehabilitation services in the home, and care management and prevention initiatives (Zygun et al. 2005). Despite effective triage programs, best-evidence-based protocols, and progress in the management of secondary complications of severe TBI, significant regional differences in practice exist (Zygun et al. 2005). The typical progression of ABI management is depicted in Figure 1; this figure will be replicated throughout the document as the various stages are explained in more detail.
Figure 1: A schematic depiction of the progression of ABI management.
Internationally, rehabilitation care of patients with brain injury is extremely diverse. Care is dictated by local health care policy, local culture and resource availability. This in turn has made development of internationally applicable systems challenging. In 1965, the World Federation of Neurosurgical Societies formed an “ad hoc” Committee on Head Injuries which was followed by the formation of the Committee of Neuro-traumatology in 1977 (Teasdale et al. 1997). This provided one of the first published international discussions of brain trauma care. The formation of the International Brain Injury Association in 1993 and the International Association for the Study of Brain Injury in 1998 continued to expand opportunities for the sharing of information (International Brain Injury Association 2008). In 1995, the Brain Trauma Foundation (BTF) developed the first Guidelines for the Management of Severe TBI (Carney 2007); these guidelines have since be revised. These guidelines are maintained in conjunction with the American Association of Neurological Surgeons and the Congress of Neurological Surgeons and other stakeholders, such as the European Brain Injury Consortium. Since their inception, countries as diverse as Italy, Mexico, Ireland, and Japan have adapted BTF guidelines to suit local needs (Citerio et al. 2003; Espinosa-Aguilar et al. 2008; Matta & Menon 1996; Shigemori & Tokutomi 2002). The World Health Organization has also expanded its focus to assess the need for effective global rehabilitation programs. It has been estimated that over 80% of the world’s people with disabilities live in low to middle income countries and only 2% have access to rehabilitation services (Hyder et al. 2007). This is especially disturbing when we consider that the highest rates of TBI due to road traffic incidents are in the Latin American and Caribbean regions, with rates in Sub-Saharan Africa not far behind (Hyder et al. 2007).
One of the most comprehensive national Brain Injury systems has evolved in the United States (US). In 1978 the National Institute on Disability and Health Research (now the National Institute on Disability and Rehabilitation Research) provided funding to New York University’s Rusk Center and the Santa Clara Valley Medical Center (San Jose, California) to develop a model of dedicated, interdisciplinary, acute inpatient rehabilitation, coupled with post-acute rehabilitation intervention and cognitive and behavioural approaches (Cope et al. 2005). By August 2004, ABI care in the US included 123 accredited hospitals, 9 skilled nursing facilities (acute inpatient rehabilitation), 153 outpatient programs, 51 home and community programs, 212 long-term residential programs, 231 residential programs and 86 vocational programs (Cope et al. 2005). While there is no one body which oversees brain injury rehabilitation specifically, several organizations have been developed in an attempt to improve the cohesion of the system. Some of the more influential organizations include the Brain Injury Association of America which was established in 1980 and currently works with 40 state run Brain Injury affiliates (Brain Injury Association of America 2015) to provide community services to individuals with brain injuries. The National Association of State Head Injury Administrators developed in 1990 as a forum to provide information to State governments and policy makers regarding brain injury (National Association of State Head Injury Administrators 2008 ), while the Center for Disease Control collects epidemiological information and sponsors research through the Public Health Injury Surveillance and Prevention Program (Centers for Disease Control 2008). Finally, the Traumatic Brain Injury Model Systems of Care was developed in 1997 as a prospective, longitudinal multi-center study to assess rehabilitation of patients through a coordinated system of acute care and inpatient rehabilitation with a 15 year follow-up (National Data and Statistical Center 2008). Although these four organizations and others like them work together to provide guidance regarding brain injury care, ultimately decisions are still left to individual institutions and their clinicians, resulting in regional differences in care.
In Canada, brain injury rehabilitation has steadily developed in a similar way to the American system. During the 1980’s and 90’s, Brain Injury rehabilitation evolved as a specialization of rehabilitation medicine. Rehabilitation hospitals work within provincial health care systems and as a result some provinces, particularly the more scarcely populated ones, have more limited ABI rehabilitation. Moreover, within provinces there is often a disparity in services between larger urban centers and smaller rural areas. While access to care is universally available, private services can be utilized by those with private funding (Cullen 2007). Reid-Arndt et al. (2010) explain that whilst patients have greatly benefitted under the Rehabilitation Act after the passing of the TBI act in 1996, community-based interventions, employment services and independent living programs continue to require additional funding and support.
In 2003, the Brain Injury Association of Canada was established to provide a national forum for sharing brain injury information. Currently, only the territories lack a territorial level brain injury association (Brain Injury Association of Canada 2015). In an attempt to standardize care, Accreditation Canada, a not-for profit organization, assesses health care institutions in Canada for quality of care and specifically includes brain injury services (Accreditation Canada 2008). The Canadian Institute for Health Information was established by National, Provincial and Territorial governments to collect and disseminate health information including information regarding rehabilitation facilities. Rehabilitation information is drawn from the National Rehabilitation Reporting System with 99 facilities across nine provinces submitting data (Canadian Institute for Health Information 2014). A separate database has also been established at the Toronto Rehabilitation Institute, which is modeled after the American Model systems. The Canadian database was expanded in 2002 to uniquely include individuals with non-traumatic brain injuries as well, which differs from the American system (Cullen 2007).
Europe presents some unique cultural and political challenges in brain injury. The European Brain Injury Society was formed in 1989 and now has 181 institutional members from all nations in the European Union, as well as Switzerland (European Brain Injury Society 2015). The European Brain Injury Consortium was formed in 1994, which “… reflected the realization that numbers of patients required in the design of definitive Phase III studies of severe head injury demanded European-wide recruitment” (p.798, Teasdale et al. 1997). While nations were encouraged to continue to develop their own strategies, value was placed on international collaboration. In 1997 the European Brain Injury Consortium developed guidelines for management of severe head injury in adults to attempt to provide some clarity and standardization in brain injury care (Maas et al. 1997). With similar collaborative goals, the European Brain Council was formed in 2002 in Brussels to attempt to coordinate research in the area of brain disease, including brain injury (Olesen & Freund 2006). Despite these attempts at standardization, national models of ABI care are still dictated by regional health care policies.
March et al. (2013) reviewed the National Mental Health Plan and reported that ABI was not referred to or explicitly acknowledged and that ABI service providers were not incorporated into future target partnerships. Given the nature of ABI and its comorbidities with mental health concerns, March et al. (2013) argue that this absence of acknowledgement hinders dual-diagnosis care and that a collaborated approach with stakeholders will help provide leadership in addressing this issue.
With a global perspective in mind, we chose to construct this chapter as a broad analysis of the over-riding systems of care in ABI management. Papers were considered for analysis if they focused on a generalized system of care and were published in a recognized peer reviewed journal. Since our aim is to compare systems of rehabilitation and not rehabilitation itself, only papers that compare at least two distinct rehabilitation groups were included. These could include separate hospitals, separate treatment groups within one center, or comparisons between patients in the same center before and after systemic changes. Papers were then subdivided into two groups: those which included an empirical, objective analysis of an outcome related to a system of care and those that provide a descriptive comparison of a component of their system. Separate tables (Individual Studies and Additional Studies, respectively) were devised for each group.