By Flora M. Hammond, MD and James F. Malec, PhD
To some degree, we always knew that brain injury (BI) was a chronic condition. However, its presentation is often life-threatening and dramatic with the initial medical response so intensive, that it is easy to lose sight of the aftermath. After the initial storm passes — for those who survive the storm—life is often never the same. Individuals with BI and their families and close others often want to believe that once they leave the hospital things will soon return to normal. So early care providers may not belabor the reality that the return to normal may take months if not years — and even then, it is likely to be to a “new normal.”
Masel and DeWitt’s (2010) landmark article brought this reality clearly into focus. They described the medical implications and advantages of reconceptualizing BI as a chronic condition rather than as an “injury” which, like a broken bone, will heal with complete return to normal function. Although mechanisms remain controversial, renewed interest in chronic traumatic encephalopathy (CTE; McKee et al., 2009) reinforced this reality by identifying individuals for whom a traumatic BI appears to initiate a disease process resulting in neurological deterioration.
Survival after BI increased dramatically following the broader availability of emergency response teams in the community in the 1970s. We are only now beginning to witness how BI complicates normal aging as the first cohorts of these early survivors reach more advanced age. In this article, we review the nature of BI as a chronic condition, associated risks and increasing risks with advancing age, and the potential benefits of applying chronic disease management (CDM) strategies over the life time of individuals living with BI.
Chronic BI: Associated Risks
A recent Institute of Medicine (IOM) report (Ishibe et al., 2009) on the long term consequences of BI found convincing evidence in the literature that a history of traumatic BI is associated with increased risk for dementia and Parkinsonism, cognitive impairments and decline, seizure and hormonal disorders as well as long term emotional and social problems, and unemployment (Table 1). Many of these risks may be compounded by a normal aging process. Advancing age also increases risk for these same medical conditions as well as for social isolation and depression. The IOM reported suggestive evidence (Table 1) of increased risk for suicide and psychosis and that many of the risks associated with moderate-severe traumatic BI may also be present in cases of milder injury.
Marwitz and colleagues (2001) note that such co-morbid medical conditions may result in re-hospitalization after the initial injury, and that the reason for re-hospitalization varies with time post-injury. Seizures and psychiatric disorders tend to present in the first years after trauma; whereas, other conditions requiring hospitalization are more typical five years post-injury. A single traumatic BI significantly increases the risk of a subsequent traumatic BI with potentially even more severe and cumulative effects (Coronado et al., 2013). The risk for substance abuse may decline in the first few years after injury (Table 1), probably because greater disability and supervision during this early period reduces access. Studies of substance abuse in BI may also be biased by the dependence on the subjective report which requires both honest reporting and successful follow up contact. Hammond et al. (2000) documented a pattern of increasing illicit drug use over the first five years following BI. Upon initial impression it appears there is a flat 8-15% illicit drug use during the first 5 years post-injury. However, 45-76% of those reporting drug use were new reports from individuals who had declined drug use the prior year. While several studies have found shortened life expectancy following traumatic BI, in a tightly controlled study of mortality, Brown and colleagues (in press) found that the risk of death is no greater after traumatic BI than after other injuries when these two groups are equated for the severity of nonhead injuries. However, longevity is reduced for both brain and nonbrain injuries—suggesting that premature death may not be due to the BI itself but associated medical conditions.
Picture any individual with BI familiar to you and then imagine how his or her health and quality of life would be improved if this person had the opportunity simply to receive regular and routine follow-up with a written plan for ongoing care, education in self-management, and more intensive medical and psychosocial interventions as required.
The evidence of increased risk after BI for medical and psychosocial morbidity is clear. Additionally, data from the TBI Model Systems National Database (www.tbindsc.org) reveals that almost a third of individuals demonstrate functional decline over a 15 year period following traumatic BI (Figure 1). On a more positive note almost 40-45% are stable over this period, and about a quarter improve. Factors that contribute to the direction and slope of this functional trajectory are not well understood at this time, and may include the presence or absence of medical co-morbidities, genetic predisposition, and quality and consistency of ongoing care. That functional status remains stable or even improves in the majority of cases offers hope that, with more consistent follow-up and services and with continuing research, the proportion of cases showing decline can be reduced and decline itself can be progressively delayed.
Chronic Disease Management (CDM)
A chronic disease management (CDM) approach has been found to be the optimal way to address other medical conditions, such as, diabetes, asthma, high blood pressure, high cholesterol, that expose affected individuals to additional medical risks.
Primary features of the CDM approach include: (1) integration of care across organizational boundaries that is supported with information and communication technology, e.g., telehealth, smartphone apps, (2) patient self-management, and (3) guideline implementation and systems to promote standardized care (Fitzsimmons et al, 2012). More specifically, CDM is based on the best available evidence relevant to the target disorder and begins with a comprehensive evaluation and screening for commonly associated conditions. On the basis of these initial evaluations, well-defined treatment priorities and goals, including prevention and maintenance, are established and documented in written care plans. These goals and priorities are developed in active collaboration with patient, close others, other members of the medical and psychosocial team, and community partners. As clinical experience and research in chronic care of the target disorder becomes more available, detailed protocols for lifelong management can be disseminated in the field. The condition may be stratified by severity or other features that link to more specific interventions. Such protocols include stepped care plans that prescribe progressively more intensive interventions to more aggressively address the emergence or worsening of medical and psychosocial co-morbidities or functional decline. Most importantly, an active and defined follow-up schedule is established with regular re-evaluations and modification of the care plan as appropriate. These elements are summarized in the World Health Organization’s (WHO) General Principles of Good Chronic Care (WHO, 2004; Table 2).
As mentioned previously, an important component of CDM is engaging patients in active self-management of their conditions with the support of close others as required. It is estimated that individuals with chronically disabling conditions spend an average of only 2 hours out of the 8,760 hours available each year with their physician. Thus, to create change we must look beyond the traditional health professional encounters and empower the person with CBI to be in charge of their care. Self-management approaches activate, empower, and build a sense of self-efficacy through teaching patients and their close others how to monitor and manage their conditions as well as when to seek professional help. Education and implementation in self-management typically uses multiple modalities including individual and group sessions reinforced with written, web-based, and multi-media materials. As with CDM generally, self-management approaches can become more detailed and specific as research and experience in chronic care of a disorder develops to provide a basis for protocol-driven care.
CDM for BI
The increased risk of medical comorbidities as well as psychosocial and functional decline after BI justifies the implementation of a CDM approach to lifelong care following these types of injuries. The WHO principles for good chronic care (Table 2) provide a roadmap for this far-reaching practice change with expected benefits in improved health and quality of life for individuals with BI. Prevention or delay of functional decline is also a reasonable expectation as is an associated increase in the proportion who experience functional improvement over time post-BI. The field is not yet at the point of developing highly detailed, evidence-based protocols for management and self-management in BI CDM. However, such evidence will become available through ongoing research and clinical experience. Appropriate funding for both clinical care and research in BI CDM is critical to successful implementation. While the initial implementation of a CDM approach in BI may initially increase health care costs for this previously neglected group of patients, these costs should be offset over time as the prevalence of costly rehospitalizations, medical and psychosocial co-morbidities, and productivity loss is reduced.
Picture any individual with BI familiar to you and then imagine how his or her health and quality of life would be improved if this person had the opportunity simply to receive regular and routine follow-up with a written plan for ongoing care, education in self-management, and more intensive medical and psychosocial interventions as required.
References
Brown A, Leibson C, Mandrekar J, Ransom J, Malec J. Longterm survival after traumatic brain injury: A population-based analysis. Journal of Head Trauma Rehabilitation in press.
Coronado VG, McGuire LC, Faul M, Sugerman DE, Pearson WS. Traumatic brain injury epdiemiology and public health issues. In: Zasler ND, Katz DI, Zafonte RD (eds), Brain Injury Medicine (2nd ed), New York: DemosMedical, 2013.
Fitzsimons M, Normand C, Varley J, Delanty N. Evidencebased models of care for people with epilepsy. Epilepsy & Behavior 2012;23:1-6.
Hammond F, Donnelly K, Sasser H, Corrigan J, Bogner J, Weintraub A, Berry J, Kreutzer J. Illicit drug use over time following traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2000;81:1260.
Ishibe N, Wlordarczyk RC, Fulco C. Overview of the Institute of Medicine’s committee search strategy and review process for Gulf War and health: Long-term consequences of traumatic brain injury. Journal of Head Trauma Rehabilitation 2009;24:424-9.
Marwitz JH, Cifu DX, Englander J, High WM, Jr. A multicenter analysis of rehospitalizations five years after brain injury. Journal of Head Trauma Rehabilitation 2001;16:307-17.
Masel BE, DeWitt DS. Traumatic brain injury: a disease process, not an event. Journal of Neurotrauma 2010;27:1529-40.
McKee AC, Cantu RC, Nowinski CJ, Hedley-Whyte ET, Gavett BE, Budson AE et al. Chronic traumatic encephalopathy in athletes: progressive tauopathy after repetitive head injury. Journal of Neuropathology & Experimental Neurology 2009;68:709-35. WHO. General Principles of Good Chronic Care 2004. Available from: www.who.int/hiv/pub/imai/generalprinciples082004.pdf.
About the authors
Flora M. Hammond, MD is a board certified physiatrist who completed her medical degree at Tulane University School of Medicine, Physical Medicine and Rehabilitation (PM&R) residency at Baylor College of Medicine, and brain injury fellowship at the Rehabilitation Institute of Michigan. Since December 2009, Dr. Hammond has served as the Covalt Professor and Chair of PM&R at the Indiana University School of Medicine (IUSM) and Chief of Medical Affairs at the Rehabilitation Hospital of Indiana (RHI). She also serves as the RHI Brain Injury Program Medical Director and Director of the NIDRR-funded TBI Model System at IUSM/RHI. Dr. Hammond is an experienced researcher who has conducted numerous clinical trials and prospective multicenter studies. She has authored more than 85 peer-reviewed publications. Her excellence in research, teaching, and administration has been acknowledged by receipt of the 2001 Association of Academic Physiatrists Young Academician Award from the Association of Academic Physiatrists and the 2011 Brain Injury Association of America William Caveness Award.
James F. Malec, PhD is Professor and Research Director in PM&R IUSM and RHI, Professor Emeritus of Psychology at the Mayo Clinic, and Board Certified in Clinical Neuropsychology and in Rehabilitation Psychology. Dr. Malec is currently Co-Director of the IUSM/RHI TBI Model System and directed the Mayo TBI Model System from 1999 through 2007. For the past 30 years, he has worked as a clinician and researcher in neuropsychology and brain injury rehabilitation with a particular interest in postacute rehabilitation and outcome measurement. He has over 130 peer-reviewed publications, and has received a number of professional recognitions including: the North American Brain Injury Society Research Award, and the Moody Prize for Distinguished Initiatives in Brain Injury Research and Rehabilita