Brain Injury as a Chronic Condition:
Implications for Research From the 2012 Galveston Brain Injury Conference Research Work Group: Mark Sherer, PhD (Group Facilitator); Sureyya Dikmen, PhD; Flora Hammond, MD; Jacob Kean, PhD; Kenneth Ottenbacher, PhD; Elizabeth Protas, PhD; Gale Whiteneck, PhD.
Where We Are, Where We Should Be Research on brain injury (BI) has been shaped by a perception that BI is a discrete event that happens in a narrow timeframe and is followed by an improving course for those who survive their injuries. This view has been informed by large multicenter observation studies that have shown substantial progress on global outcomes for most persons with BI (e.g., Murray, Teasdale, Braakman et al., 1999). While a few studies (e.g., Millis, Rosenthal, Novack et al., 2001) have shown that some persons with BI show cognitive and functional decline over time, the perception of most BI clinicians and researchers is that persons with moderate and severe BI improve over a timeframe of several months, eventually reaching a relatively steady state of cognitive ability and functional status (Sherer, Madison, Hannay, 2000). Consequently, there has been little investigation of factors that might predict late decline after BI. The conduct of such research is complicated by the inadequate capture of late functional status and comorbidities that would be needed to detect late decline in a subset of patients. Clinical trials of interventions have generally focused on the early post-injury period. A quick survey of 20 BI medication trials drawn from the ClinicalTrials.gov website revealed that a substantial majority were restricted to persons in the early hours post-injury. A few extended to a few months post-injury and fewer still were open to persons with BI regardless of time post22 BRAIN INJURY PROFESSIONAL
injury. A survey of 20 cognitive rehabilitation trials from the same website revealed that a substantial minority of these were restricted to persons within the first 3 years post-injury despite the lack of any empirical evidence that cognitive rehabilitation interventions are only effective for a limited time post-BI. While it is possible that these limited samples may not represent the universe of intervention trials for BI, review of these 40 studies suggests that many intervention trials are focused on the early hours, days, and weeks post-injury. This heavy focus on the relatively early post-injury period likely reflects that view that BI is a discrete event from which injured persons recover over a period of months eventually reaching a relatively stable plateau in cognitive and behavioral functioning. In order to conduct programmatic research on BI as a chronic condition, a number of infrastructure, attitudinal, and funding priority changes will be necessary. Researchers will need access to large data sets that support more sophisticated research on long term consequences of BI and identification of risk factors for decline in function or development of associated medical or psychosocial complications. Researchers will have to shift from their view of BI as a discrete event to increased interest in trials of interventions with persons who are several months or years post-injury. Funding agencies will have to prioritize projects that have extended follow-up periods or that capitalize on existing long term databases.
Getting from Here to There The Research Workgroup identified a number of foundational constructs that could guide programmatic research on BI as a chronic condition. These included prevention, change in incentives, coordination of care, and selection.