Important advances in healthcare rarely result from a single revolutionary study. More often, they result from the collective weight of many different studies that address a problem from different angles. Nowhere is this more clear than in the care of patients with prolonged disorders of consciousness (DOC) after severe brain injury.
Many forms of severe brain damage result in coma – complete unconsciousness that appears similar to sleep. Those who regain consciousness promptly can go on to excellent recoveries, but the longer an individual remains unconscious, the slower and less complete their ultimate recovery is likely to be. When I began practice in the 1980s, it was believed that patients who spent more than a few weeks unconscious (or in the “vegetative state”) would never recover consciousness and, if they did, would be permanently severely impaired. This became a self-fulfilling prophecy: Why conduct recovery research on patients who won’t recover? Why provide rehabilitation to patients with no hope of improvement?
In the face of this climate of pessimism, some researchers continued to pursue several important lines of research. They formally defined and studied the “minimally conscious state” (MCS) – where subtle signs of consciousness return but can be missed by non-experts.1 This resulted in the development of improved scales for detecting consciousness, as well as a recognition that as many as 40% of patients thought to be unconscious actually had some conscious awareness.2 It has since become clear that a substantial number of patients with no behavioral signs of consciousness even on expert exam, may follow mental commands based on fMRI or EEG data.3 A clinical trial of the drug amantadine showed that it can accelerate the recovery of consciousness.4 Longer term outcome studies showed that individuals with prolonged unconsciousness can continue to recover slowly over years, not weeks, and that as many as one in five might ultimately reach a level of independent functioning.5,6
As research was painting this more optimistic picture, however, studies also revealed that the most common cause of early death after severe brain injury was intentional withdrawal of life-sustaining treatment, suggesting that acute care providers continued to provide pessimistic predictions to family members. Patients who survived the acute period found it difficult to access intensive rehabilitation services because many admission guidelines viewed consciousness as a requirement for rehabilitation services.
Despite the restrictions on rehabilitation care for DOC patients in the US, research began to demonstrate the impact of intensive rehabilitation for this population. Studies showed a high rate of medical complications in the first months after injury and consultation requests to a wide range of expert specialty services. Moreover, it is the active management of these medical issues, rather than the mere passage of time, that seems to lead to greater medical stability. Studies from several European countries suggested that early and continuous access to expert rehabilitation is associated with better outcomes, regardless of the level of consciousness at the time of admission,7 and a number of specific interventions (including amantadine4 and errorless training methods8) during this time have shown efficacy in enhancing functional recovery.
Recent years have also seen much more collaboration among acute care experts in DOC (typically neurologists and neurocritical care specialists) and post-acute rehabilitation experts (typically physiatrists and neuropsychologists), combining forces to call attention to the long-term needs of this patient population and to define a research agenda that spans the time from disease onset to long-term outcomes.
The collective weight of this research has begun to impact policy, with many more changes expected in the years to come. Published guidelines of several professional societies in the US and Europe now formally state that early prediction of a hopeless prognosis is impossible and, therefore, early decisions to withdraw life-sustaining care should be avoided.9 These new guidelines advocate the use of structured scales rather than clinical judgment for assessing consciousness, and note that such patients’ complex needs are best met by multidisciplinary rehabilitation. Guidelines also support the incorporation of high tech assessment techniques such as fMRI into the clinical and prognostic evaluation, while recognizing that these are not yet widely available.10
Many of these “best practice” recommendations have been synthesized into a set or “Minimum Competency Recommendations”11 for programs wishing to treat patients with DOC, and CARF®, an organization that accredits rehabilitation service providers, has launched a new quality certification program aimed at DOC specialty providers. Reimbursement of intensive rehabilitation services for individuals with DOC remains the most challenging frontier, since many of their admission guidelines have yet to change. However, the Centers for Medicare & Medicaid Services (CMS)’s recognition of severe brain injury as a chronic disease, along with the other changes outlined above, is expected to result in further expansion of access for this population to the expert rehabilitation services they desperately need.
References:
1. Giacino J.T., Ashwal S., Childs N., Cranford R., Jennett B., Katz D.I., Kelly J.P., Rosenberg J.H., Whyte J., Zafonte R.D., Zasler N.D. The minimally conscious state: definition and diagnostic criteria. Neurology. 2002 Feb 12;58(3):349-53. doi: 10.1212/wnl.58.3.349. PMID: 11839831.
2. Schnakers C., Vanhaudenhuyse A., Giacino J., Ventura M., Boly M., Majerus S., Moonen G., Laureys S. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol. 2009 Jul 21;9:35. doi: 10.1186/1471-2377-9-35. PMID: 19622138; PMCID: PMC2718857.
3. Monti M.M., Vanhaudenhuyse A., Coleman M.R., Boly M., Pickard J.D., Tshibanda L., Owen A.M., Laureys S. Willful modulation of brain activity in disorders of consciousness. N Engl J Med. 2010 Feb 18;362(7):579-89. doi: 10.1056/NEJMoa0905370. Epub 2010 Feb 3. PMID: 20130250.
4. Giacino J.T., Whyte J., Bagiella E., Kalmar K., Childs N., Khademi A., Eifert B., Long D., Katz D.I., Cho S., Yablon S.A., Luther M., Hammond F.M., Nordenbo A., Novak P., Mercer W., Maurer-Karattup P., Sherer M. (2012). Placebo-controlled trial of amantadine for severe traumatic brain injury. N Engl J Med. Mar 1;366(9):819-26. doi: 10.1056/NEJMoa1102609.
5. Hammond F.M., Giacino J.T., Nakase Richardson R., Sherer M., Zafonte R.D., Whyte J., Arciniegas D.B., Tang X. Disorders of Consciousness due to Traumatic Brain Injury: Functional Status Ten Years Post-Injury. J Neurotrauma. 2019 Apr 1;36(7):1136-1146. doi: 10.1089/neu.2018.5954. Epub 2018 Oct 19. PMID: 30226400.
6. Nakase-Richardson R., Whyte J., Giacino J.T., Pavawalla S., Barnett S.D., Yablon S.A., Sherer M., Kalmar K., Hammond F.M., Greenwald B., Horn L.J., Seel R., McCarthy M., Tran J., Walker W.C. Longitudinal outcome of patients with disordered consciousness in the NIDRR TBI Model Systems Programs. J Neurotrauma. 2012 Jan 1;29(1):59-65. doi: 10.1089/neu.2011.1829. Epub 2011 Aug 4. PMID: 21663544.
7. Andelic N., Bautz-Holter E., Ronning P., Olafsen K., Sigurdardottir S., Schanke A.K., Sveen U., Tornas S., Sandhaug M., Roe C. Does an early onset and continuous chain of rehabilitation improve the long-term functional outcome of patients with severe traumatic brain injury? J Neurotrauma. 2012 Jan 1;29(1):66-74. doi: 10.1089/neu.2011.1811. Epub 2011 Dec 5. PMID: 21864138.
8. Trevena-Peters J., McKay A., Spitz G., Suda R., Renison B., Ponsford J. Efficacy of Activities of Daily Living Retraining During Posttraumatic Amnesia: A Randomized Controlled Trial. Arch Phys Med Rehabil. 2018 Feb;99(2):329-337.e2. doi: 10.1016/j.apmr.2017.08.486. Epub 2017 Sep 22. PMID: 28947165.
9. Giacino J.T., Katz D.I., Schiff N.D., Whyte J., Ashman E.J., Ashwal S., Barbano R., Hammond F.M., Laureys S., Ling G.S.F., Nakase-Richardson R., Seel R.T., Yablon S., Getchius T.S.D., Gronseth G.S., Armstrong M.J. Practice guideline update recommendations summary: Disorders of consciousness: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research. Neurology. 2018 Sep 4;91(10):450-460. doi: 10.1212/WNL.0000000000005926. Epub 2018 Aug 8. Erratum in: Neurology. 2019 Jul 16;93(3):135. doi: 10.1212/WNL.0000000000007382. PMID: 30089618; PMCID: PMC6139814.
10. Kondziella D., Bender A., Diserens K., van Erp W., Estraneo A., Formisano R., Laureys S., Naccache L., Ozturk S., Rohaut B., Sitt J.D., Stender J., Tiainen M., Rossetti A.O., Gosseries O., Chatelle C.; EAN Panel on Coma, Disorders of Consciousness. European Academy of Neurology guideline on the diagnosis of coma and other disorders of consciousness. Eur J Neurol. 2020 May;27(5):741-756. doi: 10.1111/ene.14151. Epub 2020 Feb 23. PMID: 32090418.
11. Giacino J.T., Whyte J., Nakase-Richardson R., Katz D.I., Arciniegas D.B., Blum S., Day K., Greenwald B.D., Hammond F.M., Pape T.B., Rosenbaum A., Seel R.T., Weintraub A., Yablon S., Zafonte R.D., Zasler N. (2020). Minimum Competency Recommendations for Programs That Provide Rehabilitation Services for Persons With Disorders of Consciousness: A Position Statement of the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research Traumatic Brain Injury Model Systems. Arch Phys Med Rehabil. Jun;101(6):1072-1089. doi: 10.1016/j.apmr.2020.01.013.
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