THE LONG-TERM ISSUES TASK FORCE (LTITF) is a Brain Injury Interdisciplinary Special Interest Group of the American Congress of Rehabilitation Medicine (ACRM). This issue of Journal of Head Trauma Rehabilitation on Aging With Traumatic Brain Injury is rooted in the efforts of LTITF to promote interest in the topic of aging with brain injury. As survivors with brain injury get older, they are heir to health-related problems of aging much like the general population. Are there differences between survivors of brain injury and the general population with respect to such problems and are these differences qualitative, quantitative, or both? The work of the LTITF has focused on these issues and this special communication, serving as a prelude to the current topical issue on aging with brain injury, is meant to update Journal of Head Trauma Rehabilitation's readership on LTITF activities. The author, a past chairperson of the LTITF, offers a personal account of the history of the task force and provides an update on its findings, perspectives, and plans.
HISTORY
Throughout the early 1990s within the ACRM, the LTITF played a major role in drawing attention to the long-term problems of individuals living with brain injury. LTITF was one of the first professional groups to recognize, anticipate, and discuss long-term issues relevant to the growing wave of individuals who, owing to great advances in trauma care, had survived severe traumatic brain and bodily injuries that would have proved fatal in earlier generations. By the late 1990s, however, Dr Stu Phillips, chairperson of the LTITF, and other members began to question the aims and focus of the task force and wondered whether the group could or should still have a role within ACRM as an interdisciplinary special interest group. The group, according to Dr Phillips, had lost some of its founding members and discussion (however, interesting) had replaced research as a task force focus. I also observed significant shrinkage in the size of LTITF, most members having moved on to other challenges. LTITF had become a very small band, indeed.
In early 2000, when Dr Phillips turned the leadership of the task force over to me, he remarked: "The challenge for you and the group at this point is as basic as it gets. You need to decide whether you should go on or terminate." At this juncture, Marilyn Spivak, a founder and former president of what is now known as the Brain Injury Association of America, poignantly described the great medical challenges of individuals aging with brain injury, both from a professional and a personal family perspective. Her views resonated with many of the task force members whose facilities had been serving clients with long-term brain injury for many years. In very practical terms, we could see physical and cognitive decline occurring in long-term clients who were aging with brain injury. To some, the observed declines seemed more accelerated than similar changes reported for the general population. Such clinical impressions encouraged budding aims of the task force to study and validate these observations because it was realized that public health and economic implications might be substantial. This realization found important support in a report of the Centers for Disease Control and Prevention (CDC) on traumatic brain injury, delivered to Congress in early 2001.1
After much deliberation, our "small band" arrived at a consensus approach for LTITF that was based on and reflected the following:
1. Data from the CDC had indicated that 80 000 people a year were experiencing long-term difficulties because of brain trauma.1 Although most brain injuries at the turn of the 21st century still struck individuals younger than 30 years, the new life expectancy of 2 of 3 of these individuals was projected at 30 to 40 additional years.1 The LTITF felt that these sobering statistics on aging with brain injury could not be ignored. The large number of individuals with brain injury expected to experience long-term difficulties argued for the importance of a continuation of the LTITF. The CDC data energized LTITF members and informed their new imperative of developing a systematic approach to studying and contributing solutions to the long-term challenges of aging in the new millennium.
2. To revitalize task force efforts and remain faithful to the ACRM Brain Injury Interdisciplinary Special Interest Group guidelines, members felt that the task force needed to move beyond well-meaning discussion and experience sharing. Accordingly, members decided to develop a product-oriented approach that would focus on research and publications. The research emphasis set a goal of bringing new information to the field regarding the unique challenges faced by individuals with brain injury as they aged.
NEW DIRECTIONS FOR THE LTITF
On the basis of task force discussions, we adopted a focus for the LTITF's initial research efforts: the health implications of aging with brain injury. We posited a working hypothesis that, in some respects, individuals with brain injury may be aging more quickly than the general population. A project was formulated (see further in this article) and methodological expertise was provided by Dr Michael Mozzoni and lead researcher Dr Tina Trudel, who eventually became chairperson of the task force. The engine for the LTITF inquiry was a survey developed by Dr Trudel and her colleagues, which in part was an adaptation of the National Institute on Disability and Rehabilitation Research Model Systems demographic data format.2 The survey also included additional items that were appropriate to long-term circumstances including the SF-36, a health status instrument2 used in many general population studies that enabled cross population comparisons. The target population of the study consisted of individuals who had sustained traumatic brain injury after an age of 16 years, were currently alive more than 10 years after injury, and were at least 30 years of age.2 The average age was, in fact, 47.2 years.
By 2005, more than 1800 surveys had been distributed to a broad spectrum of individuals with brain injury and more than 300 usable surveys were returned.2 Preliminary results indicated "[horizontal ellipsis] high rates of unemployment, seizures, medication use, obesity, smoking and hypertension [horizontal ellipsis] and very high rates of reported chronic pain."2 Somewhat surprisingly, most respondents reported satisfaction with their medical treatment, but less surprising was the high rate of failure to obtain adequate screenings for various potential diseases.2 Social isolation and perceived loneliness were also prevalent. Although full survey findings have not as yet been peer reviewed and published, preliminary findings have already raised important questions regarding health screenings for colon cancer at age-appropriate intervals and the impact of loneliness and social isolation on perceived quality of life. These and other issues emerging from the survey are being deliberated by the task force as it moves toward its next project, the publication of a book on various implications of aging with brain injury.
Two other problems have been of concern to the LTITF: susceptibility to falls and the development of chronic medical complications. With respect to these issues, the task force wanted to know whether individuals with brain injury differed from the general population, namely, whether persons with brain injury were experiencing an earlier onset and greater severity of symptoms. Two relevant LTITF initiatives have been undertaken. Members of the LTITF from ReMed and Beechwood (2 postacute brain trauma rehabilitation facilities in Pennsylvania) identified the problem of falls as being of mutual concern to both organizations. The ReMed group (Helen Carmine, Mary Pat Murphy, and David Krych) initiated an extensive literature review of falls in a variety of aging populations. In conjunction with Dr Rosette Biester of the University of Pennsylvania, they are planning to submit their work for publication, consistent with the dissemination aims of the LTITF. Their review of the literature, when shared with Beechwood, also led to the formulation and implementation of a "falls protocol" that was initiated in 2004. A paper describing the results of the "falls protocol" project is being planned. Preliminary findings indicate a steady decline in falls from 2004 through 2007 at the Beechwood facility. In addition, a subgroup of "frequent fallers" seems to be emerging that raises questions about how the problem of falls is distributed within the population of aging brain injury survivors.
Under the heading of chronic medical conditions, a second initiative promoted by LTITF was a study of obesity and hypertension in individuals aging with brain injury.3 Felicetti and Trudel report that individuals with brain injury may not be "aging" more quickly than the general population with respect to chronic hypertension, obesity, or being overweight. Using body mass index and reported hypertension data, Felicetti and Trudel found these measures to be greatly impaired among individuals with brain injury, but they were no more impaired than for other Americans in the same age groups.3 Being overweight, obese, and/or hypertensive may be of epidemic proportions nationally, but apparently not disproportionately so in the brain injury population.
Despite the study of Felicetti and Trudel (see also Ashman4), there are not, as yet, a sufficient number of studies to tell whether individuals with brain injury differ from the general population with respect to onset and severity of symptoms in age-related health conditions. Nevertheless, findings to date suggest that as individuals with brain injury grow older, they do face daunting health problems. Initiatives of the LTITF will continue to be dedicated to the study and alleviation of these problems so that individuals with brain injury need not face their advancing years with more trepidation than others in our society.
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