Several years ago, an article was published identifying the need for smaller research studies that can better identify the time period over which progress can be made in the cases of TBI and Stroke. The author makes four excellent points.
- We need to be careful not to use “index scores” that may not be sensitive enough to measure all functions appropriately.
- We need to better educate and ensure referrals are made available.
- We must advocate for the patient whose impairment makes it difficult for them to advocate for themselves.
- And we need to demand smaller trials to support the value of longer, focused therapy.
In our fully embraced world of “evidence based” therapy, these ideas are no brainers.
Why Stroke and TBI Patients Often Don’t Get Optimal Rehabilitation Therapy
It wasn’t too long ago when both the medical community and the public believed that the recovery period after brain injury was very limited. We are now entering an exciting period in rehabilitative care, in which the time span over which continued improvement may occur, and the improvement to be expected, are increasing. This trend largely began with a seminal research paper published in 2008 in the American Journal of Physical Medicine and Rehabilitation (Journal Abstract). While a scientific paper written 8 years ago is often dated, I am going to paraphrase its findings because the causes they cited then for slow progress in offering optimal rehabilitation for stroke and TBI patients remains true and relevant to this day.
Stroke and traumatic brain injury (TBI) are leading causes of adult disability in the United States today. Of the 5.5 million people in the United States surviving a stroke,1 half live with motor and/or cognitive impairments that affect their ability to effectively function and diminish their quality of life. In about 25% of stroke survivors, motor problems often means a need for daily assistance by others. However, cognitive symptoms also affect independence, and their consequences may even exceed those physical limitations.2,3 The number of people with TBI is comparable to that of stroke, with 1.4 million U.S. citizens sustaining TBI annually, and at least 5.3 million living with its disabling effects.4,5 The most frequent unmet needs for services after TBI hospitalization are cognitive (memory and problem solving), emotional, and vocational in nature.6
The largest reason offered by these researchers in 2008 for this underreporting is that the rehab community has a limited appreciation that cognition is a term that applies collectively to many differentiated functional systems, from attention to mathematical skill. In this context, using a single composite cognitive index score is like obtaining a “sensory score” after only testing vision with an index whose name implies that the integrity of all senses have been evaluated.
The second major reason cited in this important paper is that stroke and TBI patients are often not identified as appropriate candidates for care to augment motor function despite the fact that rehabilitation is often effective. This may be because referrals and attempts at treating symptoms of brain pathology are often constrained by a long held assumption that therapy techniques, medications, or other interventions are no longer effective after some arbitrary interval—typically, 6 months to a year after the brain injury. This limited expectation, which the authors contend is not absolutely supported by research, keeps some therapy candidates from reaching the professionals who have tools to augment their recovery.
Stroke and TBI patients who often fail to receive optimal rehab for their cognitive impairments is a result of the impairments itself. Brain injury sufferers with abnormal arousal and motivation, aphasia, or difficulty organizing and planning activities and complying with instructions are often excluded from research participation because their impairment make it difficult for them to advocate for more therapy. The best solution to this problem is for family members and allied health professionals (PT, OT, and SLPs) to advocate for these patients because they themselves are unable to effectively do so themselves.
The last point that these researchers make is that our use of large randomized sample trials lacks the sensitivity required for a population with such a wide range of primary impairments. To treat stroke and TBI patients more effectively, we need more case series and small group studies to eliminate a potentially high number of “false negatives” hidden in the large-scale studies that are conducted more often. Smaller trials with patient groups not included in large-scale trials could provide usable knowledge in individual patient care typically not identified under an overly broad diagnosis of stroke or TBI syndromes.
Because of this seminal paper, more small studies are being conducted to identify which cognitive and motor impairments will improve from continued rehabilitation. For this progress to continue, the families of these patients in alliance with PTs, OTs, and SLPs in the centers where they are being treated need to join forces to advocate for better targeted small sample research and treatments defined by progress rather than arbitrary time limits.
Robert M. Hoyt, Ph.D.
Allied Health Professionals LLC
- American Heart Association. Heart Disease and Stroke Statistics—2006 Update. Dallas: American Heart Association; 2006.
- Dobkin BH. The rehabilitation of specific disorders: stroke: epidemiology. In: Dobkin BH, editor. The Clinical Science of Neurologic Rehabilitation. 2. New York: Oxford University Press; 2003.
- Barrett AM, Rothi LJG. Theoretical bases for neuropsychological interventions. In: Eslinger PJ, editor. Neuropsychological Interventions: Emerging Treatment and Management Models for Neuropsychological Impairments. New York: Guilford; 2002.
- Langlois JA, Rutland-Brown W, Thomas KE. Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations, and Deaths. Atlanta: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2004.
- Thurman D, Alverson C, Dunn K, Guerrero J, Sniezek J. Traumatic brain injury in the United States: a public health perspective. J Head Trauma Rehabil. 1999;14:602–15. [PubMed]
- Corrigan JD, Whiteneck G, Mellick D. Perceived needs following traumatic brain injury. J Head Trauma Rehabil. 2004;19:205–16. [PubMed]