Acquired brain injury presents unique challenges that make rehabilitation difficult to standardize. The development of best-practice principles has been hindered by limited access to adequate sample sizes and appropriate comparison groups in ABI patients within a clinical, rehabilitation environment 1. As a result, a consensus on optimal models of care for brain injured patients has been elusive.
In October of 2007, a workshop was held by the National Institute of Neurological Disorders and Stroke (NINDS) to develop a classification system for Traumatic Brain Injury (TBI) designed to direct therapeutic interventions 2. Traditional classification systems have been problematic given the diversity of brain injury needs. This international group of experts emphasized that we have merely begun to scratch the surface in understanding brain injury care. Nevertheless, a model of the pathway that patients should follow has evolved.
Generally, patients with an ABI receive pre-hospital care, acute care (with neurosurgical intervention if necessary), ICU management, inpatient rehabilitation, and are then discharged to the community with varying levels of support 3(Figure 1). Additional components of this pathway may include cognitive and behaviour rehabilitation programs, community living opportunities, rehabilitation services in the home, and care management and prevention initiatives 4. Despite effective triage programs, best-evidence-based protocols and progress in the management of secondary complications of severe TBI, significant regional differences in practice continue to exist 4.
Internationally, rehabilitation care of brain injured patients 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 5. This provided one of the first published international discussions of brain trauma care. The formation of the International Brain Injury Association (1993) and the International Association for the Study of Brain Injury (1998) continued to expand opportunities for the sharing of information 6. In 1995, the Brain Trauma Foundation developed the first Guidelines for the Management of Severe Traumatic Brain Injury which has since been revised in 2000 and 2007 7.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 Brain Trauma Foundation guidelines to suit local needs 8-10;10. The WHO has also expanded its focus to assess the need for effective global rehabilitation programs. It has estimated that although over 80% of the world’s people with disabilities live in low to middle income countries (LMIC), only 2% have access to rehabilitation services 11. This is especially disturbing when we consider that the highest rates of TBI due to road traffic incidents (RTIs) are in the Latin American and Caribbean regions with rates in Sub Saharan Africa not far behind 11.
One of the most comprehensive national Brain Injury systems has evolved in the US. In 1978 the National Institute on Disability and Health Research (NIDHR, 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 behavioral approaches 12. By August 2004, ABI care in the USA 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 12. While there is no one body which oversees brain injury rehabilitation specifically, several organizations have developed to 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 13to provide community services to brain-injured individuals. 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 14while the Center for Disease Control collects epidemiological information and sponsors research through the Public Health Injury Surveillance and Prevention Program 15. 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 long term follow-up 16. Although these four organizations and others like them, work together to provide guidance regarding brain injury care, ultimate 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 way similar to the American system. During the 1980’s and 90’s Brain Injury rehabilitation evolved as a specialization of rehabilitation medicine. However, in Canada there are still no national standards of care 17. 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 17. In 2003, the Brain Injury Association of Canada was established to provide a national forum for sharing brain injury information. Currently, only Prince Edward Island and the territories lack provincial/territorial level brain injury associations18. In an attempt to standardize care, Accreditation Canada, a not-for profit organization, assesses health careinstitutions in Canada for quality of care and now specifically includes brain injury services 19. The Canadian Institute for Health Information (CIHI) was established by National, Provincial and Territorial governments to collect anddisseminate health information including information regarding rehabilitation facilities. Rehabilitation information is drawn from all Ontario centers as well as 17 national facilities 20. 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 17.
Europe presents some unique cultural and political challenges in brain injury. The European Brain Injury Society was formed in 1989 21and now has 152 institutional members from all nations in the European Union as well as Switzerland. The European Brain Injury Consortium (EBIC) was formed in 1994. “This reflected the realization that numbers of patients required in the design of definitive Phase III studies of severe head injury demanded European-wide recruitment” 22. While nations were encouraged to continue to develop their own strategies, value was placed on international collaboration. In 1997 the EBIC developed guidelines for management of severe head injury in adults to attempt to provide some clarity and standardization in brain injury care22. 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 23. Despite these attempts at standardization, national models of ABI care are still dictated by regional health care policies.