An interesting theme emerged at this year’s North American Brain Injury Society’s (NABIS) 13th Annual Conference held April 6-9 in Tampa, Florida. Conference attendees and presenters alike were thinking about the emerging trend away from conceptualizing and managing brain injury as an acute injury, to management as a chronic health condition. In this vein, presentations emphasized the need to develop strategies and services to support brain injury survivors and families throughout the lifespan. This represents a critical shift in perspective. After an almost exclusive focus in healthcare and rehabilitation on short-term interventions and outcomes, providers and care managers are now concentrating on long-term, sustained and durable outcomes.

TBI as a Chronic Health Condition

John Corrigan, PhD, ABPP, presented data from the Traumatic Brain Injury (TBI) Model Systems national database, including some concerning and enlightening results regarding 5 and 10-year post-injury outcomes for brain injury patients having received acute inpatient rehabilitation. Dr. Corrigan reported the following:

• 22% had expired within 5 years post-injury. Of those that survived, 50% had been rehospitalized at least once following discharge from acute rehabilitation, and 12% were institutionalized.
• 32% needed assistance in some aspect of physical functioning.
• 39% had experienced a functional decline from an earlier achieved outcome.
• 58% were considered to have moderate to severe disability five years post-injury.
• 28% reported dissatisfaction with their quality of life, and this effect was greater among the younger patients, who experienced decreased social participation, more mental health issues and greater misuse of alcohol/substances.

The term “chronic brain injury” (CBI) was used to identify these long-term effects, and a disease management versus acute treatment approach was recommended. Such an approach would emphasize early detection/prevention of post-injury conditions, as well as pro-active and long-term management of pre-injury conditions.

Life Long Living with TBI

James Malec, PhD, presented additional findings from the TBI Model Systems database, showing some of the most commonly occurring co-morbid conditions among brain injury survivors 10 years post-injury, which were associated with higher rates of functional decline. Among the highest were hypertension (33%), hypercholesteremia (27%), depression (28%) and anxiety (24%). Several factors were postulated as potentially related, including direct effects of the brain injury, advancing age, and more sedentary lifestyle among survivors; with the likelihood that combinations of these factors were contributory.

Like other speakers, Dr. Malec emphasized the need to consider a brain injury as a chronic condition. Recommendations included lifelong case management or “resource facilitation;” the point was made that intensive and extended care early on will result in better clinical outcomes, and decreased long-term costs. He suggested redesigning health system strategy to include structured systems for identifying and tracking survivors, and driving appropriate assessments and treatment throughout the continuum of care. This would include educating primary care/treating physicians, ensuring that necessary information is transferred across providers, ensuring appropriate timing of follow-ups, and identification/coordination of long-term needs and recommendations.

Dr. Malec highlighted the importance of identifying and matching the right survivors (based upon severity of injury/disability) with the right level of supports (intensity, duration), along with the need to link brain injury survivors with community resources upon discharge from various care settings, and training survivors and family members to learn to self-manage their care. Developing a stable “resource network” of support services (including medical, clinical, residential, community, vocational) and educating key individuals in the network would be essential, and he recommended that this type of care coordination begin in the acute care setting and extend through all levels of the continuum.

Macro Care Coordination

A number of presenters went on to discuss various ways of approaching this type of “macro” (rather than “micro”) management. Al Condelucci, PhD, referred to it in his talk, “Cultural Shifting: Building Inclusive Communities for All.” and emphasized helping brain injury survivors find meaningful activities, access the community, and develop relationships as key long-term goals. Janet Williams, PhD, (“Community Matters: Measuring Outcomes”) described how her program, Community Works, Inc., in Kansas, embraces this philosophy through their home and community-based, multidisciplinary rehabilitation program. Debra McMorrow, Ann Perkins and Margaret Johnson described a pilot project in California, NeuroNet, (“A Continuum of Care Pilot for Persons with Catastrophic Brain and Spinal Cord Injury”), and how providers can work together to help integrate and coordinate care across the acute and post-acute rehabilitation continuum.

If all of the above sounds familiar, it may be because this has been the cornerstone of Paradigm Outcomes’ approach and philosophy toward medical management of individuals with brain injury, as well as other catastrophic injuries and conditions, since our inception 25 years ago.  And now that researchers are increasingly studying the issue, the findings are demonstrating how vitally important this approach is.

About the Author

Dr. Deborah Benson is senior director of clinical services at Paradigm Outcomes. Over the course of her rehabilitation career, she has conducted basic and clinical research in neuroscience, taught undergraduate and graduate psychology courses, and served as clinical supervisor for graduate neuropsychology students. A New York State-licensed psychologist with a Ph.D. in clinical neuropsychology from the City University of New York and board certification in rehabilitation psychology from the American Board of Professional Psychology, Deborah served for many years on the board of the Brain Injury Association of New York State (BIANYS) and remains very active in regional association activities. She has coauthored multiple scholarly articles and books on brain injury rehabilitation and presented at numerous regional and national conferences.