Authors: Risa Nakase-Richardson, PhD1-4 and John Whyte, MD, PhD5
1. MHBS , 2. Center of Innovation on Disability Rehabilitation and Research, 3. Defense and Veterans Brain Injury Center, Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, James A. Haley Veterans Hospital, Tampa, FL; 4. Department of Medicine, University of South Florida, 5. Moss Rehabilitation Research Institute, Elkins Park, PA
Leveraging the resources of the International Brain Injury Association (IBIA) with the American Congress of Rehabilitation Medicine (ACRM) and the U.S. TBI Model Systems Program of Research (TBIMS) has been the focus of recent efforts to improve the advocacy, clinical care, and policy-relevant research related to those with severe brain injury and disordered consciousness . With the recent addition of a Disorders of Consciousness (DOC) Task Force within the IBIA (Co-Chairs: Caroline Schnakers, Ph.D. and Nathan Zasler, M.D.), the three organizations are well positioned to have an international, collaborative impact on the care and science of managing persons with DOC. Support from IBIA has been tremendous and will include a dedicated track on DOC research at 2016 IBIA, the first of its kind at a professional meeting. The opportunity to have the volume of content on DOC at a professional meeting provides a unique chance for DOC researchers to share research yet to be published in journals and promote collaboration. The potential synergy is exciting to all stakeholders involved in these organizations.
Prior to the launch of the IBIA Task Force, the NIDRR (now NIDILRR) and VA TBI Model Systems and ACRM DOC workgroups have generated collaborative products that include publications and presentations that promote advocacy, clinical care, and knowledge discovery. One of these products included a bundle of articles on DOC topics that would focus attention on critical issues relevant to treatment access for this population. This special bundle was published in the Archives of Physical Medicine and Rehabilitation in 2013 with several articles focusing on the relevant subtopics below.
Longitudinal Functional Outcome
Initial focus of the TBIMS Special Interest group was to generate outcome research using data collected during more than twenty years of NIDILRR funding. The largest study of longitudinal functional outcome for those with DOC was published in the Journal of Neurotrauma in 2012 using the TBIMS national database in the United States . Since the TBIMS did not include population-specific measures such as the Coma Recovery Scale, patients admitted to rehabilitation with a DOC were defined as those whose Glasgow Coma Scale motor score was less than 5, and whose date of first following commands occurred after rehabilitation admission, if at all . The first study found that patients with a DOC admitted to neurorehabilitation evidenced neurologic improvement across many indices of function, disability and participation in the first five years post-injury . Approximately one-fifth of the study sample was able to live independently and work productively within that time frame. Future planned studies will examine ten-year outcomes for this study cohort. A second study examined proportions of patients who regained independence in specific areas measured by the Functional Independence Measure at rehabilitation discharge, one, two, and five years post-injury . The study was divided into two subsamples: those who regained consciousness during their rehabilitation stay (early recovery) and those who were discharged unconscious (late recovery). The proportion of the early recovery group who were independent in these functional areas increased significantly from admission to discharge to 1, 2, and 5 years post-injury. Those who recovered later still showed increasing independence through 2 years, but the percentages were lower and no significant increase in independence was seen after 2 years . These findings paralleled the work of other independent investigators outside of the TBI Model Systems [4-6].
This collection of articles highlighted prevalent comorbidities in both traumatic and non-traumatic brain injury survivors [7,8], and the types of medical specialists required to manage them during acute and post-acute stages of recovery [7,9], and pointed out that even patients with minimal function have need of high intensity care [7-10]. Early management by brain-injury specialists trained to recognize and respond to common comorbidities is a critical component of DOC inpatient rehabilitation and appeared to contribute to medical stabilization. Recent studies have highlighted that comorbidity status is linked to outcome . Indeed this may help inform why severe brain injury survivors who undergo early continuous rehabilitation evidence improved outcome and cost less than those with delayed or discontinuous rehabilitation .
Although support for inpatient rehabilitation access is growing, a paucity of research exists examining more specific treatments to recover from DOC. NIDILRR funded a randomized-controlled trial of amantadine hydrochloride, which demonstrated accelerated recovery among those treated . However, there remains a need to study a large number of additional treatments that are widely used without substantial evidence.
System of Care & Advocacy for Access
Currently in the United States, inpatient rehabilitation for survivors with DOC is available on a limited basis. Only the Veterans Administration Health Care System and Worker’s Compensation – which are responsible for the lifetime health of brain injury survivors - routinely provide access to inpatient rehabilitation [14, 15]. However, the majority of U.S. DOC survivors do not have the opportunity to obtain accurate diagnostic and prognostic information, treatment management (i.e., morbidity recognition, pharmacologic/non-pharmacologic), multi-disciplinary team care interventions, and family training/education . The availability of inpatient rehabilitation exists in other countries where health care services are considered a right of citizenship unlike the U.S. and other countries . The collection of articles provided information on some innovative models of care for patients with DOC [17, 18] and more health services research is needed .
Past and current Co-Chairs of the NIDILRR and ACRM DOC workgroups presented at the 2014 IBIA Meeting on key findings above and included providers presenting contrasting models of care from international communities. That meeting resulted in an outpouring of support for international collaboration to improve the clinical, scientific, and advocacy agenda for brain injury survivors with DOC. In response, IBIA formalized an international DOC interest group that could align with the U.S. based TBIMS and ACRM DOC partnership that same year. To further promote access to acute inpatient brain injury rehabilitation, the ACRM and TBIMS DOC Task Forces have worked for the past two years to create minimal competency standards for rehabilitation programs providing care to DOC survivors. The groups of subject-matter experts in severe brain injury have developed criteria for inpatient rehabilitation in the domains of diagnosis, prognosis, treatment, family support, and ethical guidance. Once published, it is hoped that these recommendations may inform payment systems about treatments to be provided. These standards will be presented as part of the scientific content of 2016 IBIA meeting in the Netherlands. As part of the 2014 IBIA DOC presentations, discussion ensued for other advocacy products including a worldwide registry of DOC systems of care that could highlight common and infrequent approaches to care. Collectively, the international impact of DOC clinician, scientist, and administrator collaboration will enhance the clinical care of the most severely injured survivors of brain injury.
This material is based upon work supported in part by the Defense and Veterans Brain Injury Center, U.S. Army Medical Research and Material Command (USAMRMC) contract number (W91YTZ-13-C-0015) and grant (H133A120037) from the National Institute on Disability, Independent Living, Rehabilitation and Research, Department of Health and Human Services.
The authors would also like to acknowledge the support of the Traumatic Brain Injury Model Systems, International Brain Injury Association, and American Congress of Rehabilitation Medicine.
The views, opinions, and/or findings contained in this article are those of the authors and should not be construed as an official Department of Defense or Veterans Affairs position, policy, or decision unless so designated by other official documentation.
- American Congress of Rehabilitation Medicine (ACRM) and Traumatic Brain Injury Model Systems (TBIMS) website. www.acrm.org/acrm-communities/brain-injury/disorders-of-consciousness-task-force/
- Nakase-Richardson, R., Whyte, J., Giacino, J.T., Pavawalla, S., et al. (2012). Longitudinal outcome of patients with disordered consciousness in the NIDRR TBI Model Systems Programs. Journal of Neurotrauma, 29(1), 59-65
- Whyte, J., Nakase-Richardson, R., Hammond, F.M., McNamee, S. et al. (2013). Functional outcomes in traumatic disorders of consciousness: 5-year outcomes from the NIDRR traumatic brain injury model systems. Archives of Physical Medicine and Rehabilitation, 94(10), 1855-60.
- Katz, D.I., Polyak, M., Coughlan, D., Nichols, M. et al. (2009). Natural history of recovery from brain injury after prolonged disorders of consciousness: outcome of patients admitted to inpatient rehabilitation with 1-4 year follow-up. Progress in Brain Research, 177, 73-88.
- Eilander, H.J., Timmerman, R.B., Scheirs, J.G., Van Heugten, C.M. et al. (2007). Children and young adults in a prolonged unconscious state after severe brain injury: long-term functional outcome as measured by the DRS and the GOSE after early intensive neurorehabilitation. Brain Injury, 21, 53-61.
- Lammi, M.H., Smith, V.H., Tate, R.L., Taylor, C.M. (2005). The minimally conscious state and recovery potential: a follow-up study 2 to 5 years after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 86, 746-54.
- Nakase-Richardson, R., McNamee, S., Howe, L.L.S., Massengale, J., et al. (2013). Descriptive Characteristics and Rehabilitation Outcomes in Active Duty Military Personnel and Veterans with Disorders of Consciousness with Combat- and Non-Combat- Related Brain Injury. Archives of Physical Medicine and Rehabilitation, 94, 1861-9
- Whyte, J., Nordenbo, A.M., Kalmar, K., Merges, B., et al. (2013). Medical complications during inpatient rehabilitation among patients with traumatic disorders of consciousness. Archives of Physical Medicine and Rehabilitation, 94, 1877-83.
- Nakase-Richardson, R., Tran, J., Cifu, D.X., Barnett, S.D., (2013). Do rehospitalization rates differ among injury severity levels in the NIDRR TBI Model Systems Program? Archives of Physical Medicine and Rehabilitation, 94, 1884-90.
- Ganesh, S., Guernon, A., Chalcraft, L., Harton, B., et al. (2013). Medical comorbidities in disorders of consciousness patients and their association with functional outcomes. Archives of Physical Medicine and Rehabilitation, 94, 1899-907.
- Pistoia, F., Sacco, S., Franceschini, M., Sarà, M., et al. (2015). Comorbidities: a key issue in patients with disorders of consciousness. Journal of Neurotrauma, 32, 682-8.
- Andelic, N., Bautz-Holter, E., Ronning, P., Olafsen, K., et al. (2012). Does an early onset and continuous chain of rehabilitation improve the long-term functional outcome of patients with severe traumatic brain injury? Journal of Neurotrauma, 29, 66-74.
- Giacino, J.T., Whyte, J., Bagiella, E., Kalmar, K., et al. (2012). Placebo-controlled trial of amantadine for severe traumatic brain injury. New England Journal of Medicine, 366, 819-26.
- Whyte, J., Nakase-Richardson, R. (2013). Disorders of consciousness: outcomes, comorbidities, and care needs. Archives of Physical Medicine and Rehabilitation, 94, 1851-4.
- McNamee, S., Howe, L., Nakase-Richardson, R., Peterson, M. (2012). Treatment of disorders of consciousness in the Veterans Health Administration polytrauma centers. Journal of Head Trauma and Rehabilitation, 27, 244-52.
- Fins JJ. (2013). Disorders of consciousness and disordered care: families, caregivers, and narratives of necessity. Archives of Physical Medicine and Rehabilitation, 94, 1934-9.
- Seel, R.T., Douglas, J., Dennison, A.C., Heaner,S. et al. (2013) Specialized early treatment for persons with disorders of consciousness: program components and outcomes. See comment in PubMed Commons belowArchives of Physical Medicine and Rehabilitation, 94, 1908-23.
- Vogel, D., Markl, A., Yu, T., Kotchoubey, B., et al. (2013). Can mental imagery functional magnetic resonance imaging predict recovery in patients with disorders of consciousness? Archives of Physical Medicine and Rehabilitation, 94, 1891-8.
- Grill, E., Klein, A.M., Howell, K., Arndt, M. et al. Rationale and design of the prospective German registry of outcome in patients with severe disorders of consciousness after acute brain injury.(2013). Archives of Physical Medicine and Rehabilitation, 94, 1870-6.
Risa Nakase-Richardson, PhD
James A Haley Veterans Hospital
13000 Bruce B. Downs Boulevard
Polytrauma, Mail Code 117
Tampa, Florida 33612
T: 813-972-2000, 5309