Abstract

The current study was conducted to determine (a) the demographic and injury characteristics of individuals who did not receive treatment for mild brain injury and (b) the reasons these individuals do not receive or seek treatment. In a large sample of undergraduate students initially surveyed via an on-line questionnaire (n = 1,853), 35% of those who responded to a subsequent survey acknowledged that they had experienced at least one mild traumatic brain injury (TBI) for which they were not treated. Compared with those who were treated for each TBI, those who were untreated were more likely to be men and were less likely to report persisting symptoms 3 months after the injury. There were no differences in demographics or injury characteristics (e.g., length of time unconscious) between groups. Of those with an untreated TBI, the most common reasons for not seeking treatment were that the symptoms resolved quickly and that they were neither bothersome nor disruptive. Findings are discussed in terms of research on recovery from mild TBI.

Introduction

Perhaps, the most well-known and comprehensive epidemiological research on traumatic brain injury (TBI) in the United States was conducted by the Centers for Disease Control. This work estimates that an average of 1.4 million TBIs occur in the United States each year, including 1.1 million emergency department visits, 235,000 hospitalizations, and 50,000 deaths (Langlois, Rutland-Brown, & Wald, 2006). Despite these sobering statistics, this and related work likely underestimates the incidence of TBI because it relies on individuals who present at an emergency room, stay in a hospital, or die from their injury (e.g., seeBazarian et al., 2005; Cassidy et al., 2004; Gilchrist, Thomas, Wald, & Langlois, 2007; Schulz et al., 2004; Thompson, McCormick, & Kagan, 2006). Langlois and colleagues (2006) described that those who seek treatment for TBI in other settings (e.g., outpatient visit to a physician's office) or those who sustain an injury but do not seek care are not to be included.

To understand individuals who do not make treatment contact for TBI, it is necessary to conduct population-based research studies. These studies survey a typically large population of individuals (often randomly selected) about TBI and related symptoms, but importantly, they do not select participants because they sought treatment for TBI. For instance, the 1991 National Health Interview Survey, an ongoing household interview survey of a national representative sample of the civilian non-institutionalized population, asked about head injury with a loss of consciousness in the 12 months before the interview (Sosin, Sniezek, & Thurman, 1996). They estimated that 1.5 million individuals sustained a TBI that did not result in either death or long-term institutionalization, but that 25% did not seek medical care. In a convenience sample of primarily college students, Templer and colleagues (1992) found fairly high incidence (typically between 30% and 40%) of what they termed “unattended injuries” or TBIs that were not brought to the attention of a physician. These attended injuries appeared to be mild (but were not categorized) and significantly less severe than the attended injuries as determined by self-reported loss of consciousness (formal statistical analyses on these data were not reported). More recently, the Rand Corporation surveyed a representative sample of U.S. service members who had returned from Iraq and/or Afghanistan (Tanielian & Jaycox, 2008). Of the 20% of veterans who reported that they had experienced a probable TBI, 57% reported that they had not been evaluated by a physician for brain injury. Unfortunately, these veterans were not explicitly asked why they either did not seek or obtain TBI-related treatment, but for mental health concerns (e.g., PTSD), more than one third raised concerns that treatment might harm their career or that their coworkers would have less confidence in them.

To our knowledge, only one study has examined reasons why individuals do not seek treatment for TBI. Setnik and Bazarian (2007) found that among middle-aged adults who responded to an internet-based survey and who had suffered primarily mild TBIs, 75% endorsed “Did not think I needed care” as the most frequent reason for not seeking treatment. Of the remaining five response options, 24% selected “Other”, 7% “Too expensive”, 2% “Could not take time off”, and 1% for “No way to get to doctor or ER” and “No one to watch children”. In our view, such options do not provide sufficient information or detail about why individuals do not make treatment contact. For instance, it is unclear why 75% did not perceive that they needed care: Had their symptoms resolved? Were the symptoms not interfering with functioning? Also, such a large response to the “Other” option suggests that the response alternatives for not seeking treatment were not sufficient. Despite such limitations, this study found that 42% of their sample did not seek medical care and, compared with those who did seek treatment, these participants were more likely to be older, to have suffered a mild TBI, and to have been injured at home.

In general, although the above studies demonstrate that roughly 30%–40% of individuals with TBI are not treated in a civilian population, relatively little remains known about why individuals with TBI did not seek or receive medical care. In our view, such information might provide important insight on the natural course of recovery of TBI, perceived barriers to treatment, or perhaps patient misunderstanding about TBI. Moreover, given that education and support have been demonstrated to be effective interventions for mild TBI (seeComper, Bisschop, Carnide, & Tricco, 2005, for review) early identification of and intervention with these individuals might be beneficial.

The purpose of this research is 2-fold: First, we sought to replicate previous work that has demonstrated that those who do not seek treatment for TBI differ from those who do seek treatment. We predicted that those with less severe injuries, and presumably less disabling injuries, would be less likely to seek treatment. Second, and more importantly, we sought to identify the specific reasons why individuals do not seek or receive treatment for TBI. We did not have explicit hypotheses here, but queried participants in a larger variety of domains that might serve as barriers to treatment (e.g., stigma, lack of health insurance) than Setnik and Bazarian (2007). Because many of the injuries were likely to be relatively mild as we queried individuals who had not presented for treatment, we also asked whether the symptoms had resolved quickly or simply not been problematic. These latter questions were generated because considerable research has demonstrated that the vast majority of individuals with mild TBI recover and do not experience persisting symptoms (e.g., Carroll et al., 2004).

Materials and Methods

Undergraduate students (n = 1,853) at a large public southeastern university completed an on-line questionnaire with a large variety of questions, including several about TBI. These questions were adapted from the Mild Traumatic Brain Injury Committee of the Head Injury Interdisciplinary Special Interest Group of the American Congress of Rehabilitation Medicine (Kay et al., 1993). Participants were asked whether they had suffered a head or brain injury in which they (a) lost consciousness or were knocked out, (b) felt dazed, disoriented, or confused, (c) lost memory for events immediately before or after the accident, or (d) had a neurological deficit (e.g., paralysis).

Thirty percent responded affirmatively to any one of these questions (n = 557): 13% (n = 249) endorsed loss of consciousness, 27% (n = 495) endorsed being dazed, disoriented, or confused, 7% (n = 126) endorsed loss of memory, and 0.5% (n = 10) endorsed neurological deficits. These participants were subsequently invited via email to participate in the second part of the on-line survey, in which additional questions about the TBI were asked. These questions included at what age the TBI occurred, its cause, the length of time unconscious, whether there were any lasting (greater than three months) effects, and whether they had other injuries besides the TBI. A final question asked: “Did you see a doctor, trainer, or other health care professional for the head injury?” The last three questions were in a Yes/No format. If necessary, respondents answered the above questions for up to three TBIs. If respondents answered that they had not received treatment for any one of the TBIs they experienced, they were invited to respond to a series of 16 questions about why they had not received treatment. Examples of such questions include “The symptoms did not bother me,” “I (or my parents) did not have health insurance,” and “I would have thought less of myself if I could not handle it on my own.” Participants were instructed that they could respond to more than one item.

A total of 287 participants (52%) completed the second part of the survey. Of these participants, 222 suffered one TBI, 51 suffered two TBIs, and 14 suffered three TBIs. If participants indicated that any one of their TBIs was untreated, they were placed in the untreated group, whereas those who had received treatment for each TBI were in the treatment group. In cases with multiple treated or untreated TBIs only (n = 19, 6.6%), we used the first one reported by the participant for the analyses described below. Because we were particularly interested in untreated TBI, we placed participants with both treated and untreated TBI in the untreated group and used the TBI for which they did not seek treatment for analyses. Because of the clinical and research focus on mild TBI, as well as the reality that most injuries in our sample were mild, we excluded all participants who would have likely met criteria for a moderate or severe TBI. We did this by deleting all participants who had an LOC greater than 30 min. A total of 12 participants (4% of the total) met this criterion and all were in the treated TBI group.

Results

Of the 287 participants, 91 (32%) suffered at least one untreated TBI, 12 (4%) had two untreated TBIs, but no participant had three untreated TBIs. There were few differences between those who received treatment for TBI versus those that did not seek treatment (Table 1). Those who did not seek treatment were more likely to be men (38% vs. 25%; χ2(1) = 5.6, p = .017) and were less likely to report that they experienced persisting (>3 months) symptoms after the injury (7% vs. 22%; χ2 = 10.6, p = .001.). Using either t-tests and χ2 analyses, groups did not differ (p > .05) on demographic variables of age, year in school, or race or injury characteristics such as age at injury, time since injury, loss of consciousness, etiology of injury, or whether they had suffered any other injuries besides TBI. Overall, the vast majority of participants (75%) suffered one TBI. This TBI was occurred, on average, remotely in adolescence (an average of 6–7 years previously), was fairly mild (an average of LOC of three to four minutes), and was most commonly sports-related (41% for the treated group and 31% for the untreated group).

Table 1.

Demographic and injury characteristics for those treated for all mild TBIs (n=196) versus not treated (n = 91) for at least one mild TBI

Variable Treated Untreated 
Demographics 
 Age 20.9 (5.4) 20.9 (5.2) 
 Gender (% men)* 38.0 52.7 
 Upper-class student (junior or senior, %) 29.6 33 
 Caucasian (%) 75.5 78.0 
Injury characteristics 
 Age at injury (years) 14.0 (5.2) 14.7 (4.4) 
 Time since injury (years) 7.0 (6.4) 6.2 (5.9) 
 Loss of consciousness (min) 4.0 (6.4) 2.8 (4.7) 
Etiology of injury 
 Fall (%) 22.4 14.3 
 Hit by object (%) 11.2 17.6 
 Motor vehicle accident (%) 10.2 13.2 
 Sports related (%) 40.8 30.8 
 Bicycle accident (%) 5.6 8.8 
 Other (%) 9.7 15.4 
Other injuries besides TBI (% yes) 36.7 33.0 
Lasting effects of injury >3 months (% yes)** 20.4 6.6 
Variable Treated Untreated 
Demographics 
 Age 20.9 (5.4) 20.9 (5.2) 
 Gender (% men)* 38.0 52.7 
 Upper-class student (junior or senior, %) 29.6 33 
 Caucasian (%) 75.5 78.0 
Injury characteristics 
 Age at injury (years) 14.0 (5.2) 14.7 (4.4) 
 Time since injury (years) 7.0 (6.4) 6.2 (5.9) 
 Loss of consciousness (min) 4.0 (6.4) 2.8 (4.7) 
Etiology of injury 
 Fall (%) 22.4 14.3 
 Hit by object (%) 11.2 17.6 
 Motor vehicle accident (%) 10.2 13.2 
 Sports related (%) 40.8 30.8 
 Bicycle accident (%) 5.6 8.8 
 Other (%) 9.7 15.4 
Other injuries besides TBI (% yes) 36.7 33.0 
Lasting effects of injury >3 months (% yes)** 20.4 6.6 

Note: TBI = traumatic brain injury.

*p = .017.

**p = .001.

Because of the large number of participants with sports-related mild TBI (38%), we analyzed how these participants differed from those with non-sports-related etiologies. Across all the demographic and injury variables, there were only two differences between these groups. Using an independent-groups t-test, those with sports injuries had a significantly shorter (p = .042) loss of consciousness (2.7 compared with 4.2 min for those with other etiologies). A χ2 indicated that those with sports-induced TBIs were significantly less likely (p = .033) to experience other injuries besides the TBI (28% compared with 40% for those with non-sports etiologies).

Table 2 presents the reasons why participants in the untreated group did not seek treatment. The three most common reasons for not seeking treatment were that the symptoms resolved quickly (73%) and that they were neither disruptive (61%) nor a bother (51%). Ninety percent of the participants endorsed one of these three reasons, 29% endorsed two reasons, and 33% endorsed all three reasons. After these three, there was a significant drop off to the next reasons: Lack of time (20%), cost (16%), friends or family more helpful than a healthcare professional (11%), lack of health insurance (10%), and did not know where to get help (10%). The remaining reasons were endorsed by less than 10% of the sample and two (possible medication side effects and family or friends not respecting them) were not endorsed by any participant. There were only two differences between sports-related and non-sports-related TBI in reasons for not seeking treatment. According to χ2 analyses, those with sports-induced TBI were significantly less likely (p = .025) to report health insurance difficulties (0% compared with 16% in the non-sports TBI group) and significantly less likely (p = .027) to report financial difficulties (4% vs. 22% in the non-sports group).

Table 2.

Reasons for not seeking treatment in the untreated mild traumatic brain injury group (n = 91)

Reason Percent endorsing 
The symptoms resolved quickly 73 
The symptoms did not disrupt my life 61 
The symptoms did not bother me 51 
I didn't have the time 20 
It would cost too much money 16 
My friends or family were more helpful than a health care professional would have been 11 
I (or my parents) did not have health insurance 10 
I did not know where to get help or whom to see 10 
It was too difficult to schedule an appointment 
My friends or family did not want me to get treatment 
I would have thought less of myself if I could not handle it on my own 
Difficult to arrange transportation 
I have received treatment before and it did not work 
The medications that might have helped have too many side effects 
My friends or family would have respected me less 
Reason Percent endorsing 
The symptoms resolved quickly 73 
The symptoms did not disrupt my life 61 
The symptoms did not bother me 51 
I didn't have the time 20 
It would cost too much money 16 
My friends or family were more helpful than a health care professional would have been 11 
I (or my parents) did not have health insurance 10 
I did not know where to get help or whom to see 10 
It was too difficult to schedule an appointment 
My friends or family did not want me to get treatment 
I would have thought less of myself if I could not handle it on my own 
Difficult to arrange transportation 
I have received treatment before and it did not work 
The medications that might have helped have too many side effects 
My friends or family would have respected me less 

We conducted two additional analyses to further understand (a) the small number of participants who were untreated yet reported persisting symptoms after TBI and (b) untreated participants who reported well-known barriers to treatment (e.g., cost issues). For the 7% (n = 6) of untreated TBI participants who reported persisting symptoms, we analyzed how frequently they endorsed any one of the three most common reasons for not seeking treatment (symptoms resolved quickly or were not bothersome nor disruptive). Of these, 67% also reported that the symptoms were not bothersome, 50% reported that the symptoms were not disruptive, and 33% reported that the symptoms had resolved quickly. Sixty-seven percent reported at least one of these reasons. Second, we further analyzed the reasons for not seeking treatment for participants who endorsed time, cost, family/friends more helpful than a healthcare professional, lack of health insurance, or where to get help as treatment barriers. We examined how frequently participants endorsed one of these reasons, as well as any one of the three most frequently endorsed reasons for not seeking treatment (see above for reasons). For each reason, we list the percentage of time at least one of the three reasons was endorsed: Time (89%), lack of health insurance (90%), did not know where to go for help (78%), and cost (94%). Overall, the analyses described in this paragraph demonstrate that even among those with untreated TBI who reported persisting symptoms, these symptoms tended to either resolve quickly or were not perceived as problematic and, among untreated individuals who endorsed well-known barriers to treatment (e.g., lack of health insurance), the vast majority also tended to view these symptoms as quickly resolved or not problematic.

Discussion

This study has replicated and extended prior research by more fully examining why individuals with TBI do not seek treatment. By recruiting participants with an on-line questionnaire, and not those presenting for treatment or evaluation, we were able to screen a large sample of participants and identify those who had a suffered a TBI and who had not received any treatment. Of participants in our sample (the vast majority of whom suffered a mild TBI), 32% reported that they had not received treatment for at least one of their TBIs which had occurred, on average, in adolescence. Those who did not seek treatment for at least one TBI were more likely to be men and significantly less likely to report experiencing persisting symptoms due to the TBI 3 months after the injury (i.e., only 7% reported persisting symptoms). Of those who did not seek treatment, the vast majority (90%) endorsed at least one item reflecting that the symptoms resolved quickly, were not disruptive, or did not bother them.

Our findings are similar to other work that has addressed untreated TBI. First, we found a similar percentage of young adults (32%) who do not seek treatment for TBI as in other civilian samples. However, this lack of treatment contact is lower than it is for psychiatric disorders. For instance, a large epidemiological study found that among U.S. residents with one DSM-IV disorder (either anxiety, mood, impulse control, or substance abuse disorder) in the past 12 months, 59% did not receive treatment in the past year (Wang et al., 2005). Individuals with substance abuse or impulse control disorders were less likely to make treatment contact (62% and 70%, respectively) than those with mood or anxiety disorders (44% and 58%, respectively). Unlike those who have suffered a mild TBI (the vast majority of participants in our sample), psychiatric disorders in general are likely to be more stigmatizing, require more ongoing and expensive care, and affect insight, particularly for substance abuse disorders. Nevertheless, the Wang and colleagues (2005) study also found, similar to our work, that men were less likely to receive treatment than women. Second, our research, like previous work, found that the majority of untreated TBIs are of mild severity. Our work, however, did find a higher percentage (100%) with mild injuries versus the recent study by Setnik and Bazarian (2007) who found that approximately 70% experienced a mild TBI. Our differences may reflect the fact that we had a younger sample who reported more sports-related injuries, which are more likely to be mild, whereas the other study had middle-age group who had experienced more motor-vehicle accidents.

In terms of reasons for not seeking treatment, 90% of our sample reported that their symptoms resolved quickly or were not problematic, a finding which seems consistent with research that has demonstrated that prolonged symptoms after mild TBI are not expected. In their comprehensive review of outcome after mild TBI, Carroll and colleagues (2004) concluded that recovery is expected within, at most, 12 months after injury and that if symptoms persist the presence of litigation is an aggravating factor. This study also noted that recovery appears to be particularly rapid in sports-related concussion, which was the most common injury in our study. In another study, Binder, Rohling, and Larrabee (1997) meta-analyzed cognitive outcomes after mild TBI and found essentially no detectible differences between mild TBI and control groups. Because these studies do not necessarily preclude that the rare mild TBI patient will have a poor outcome, we also analyzed the small number of participants (n = 7) who reported persisting symptoms (greater than 3 months), but four of these individuals also acknowledged that the symptoms resolved quickly or were not problematic. So, if this small number of individuals did in fact experience persisting symptoms, they appear to have been mild and not problematic. Findings based on such a small number should naturally be interpreted cautiously and we, unfortunately, cannot say more about the remaining three participants and about whether the symptoms that they reported experiencing were genuinely due to TBI or perhaps a function of pre-existing psychological issues or over-reporting in a litigation context. Either way, our findings indicate that if there are genuine problems after mild TBI that has not been treated, they appear to be atypical and not problematic.

There are several limitations of this study that should be kept in mind. First, this is a sample of college students and these findings might not generalize to other populations. There are likely important ways in which college students differ from the general population including intelligence and socioeconomic status. It is unclear to what extent these variables might affect the recall of or reporting about a possible TBI. Second, it would have been advantageous to query participants about any possible litigation, particularly to further understand if this may have affected whether they reported persisting symptoms (i.e., lasting more than 3 months). It is known that over-reporting of symptoms and possible malingering is more likely to occur in this context versus other clinical contexts (seeMittenberg, Patton, Canyock, & Condit, 2002). Future research on this topic should query about possible past or current forensic involvement. A final limitation of this study is that we relied on self-report of TBI and related symptoms that may have occurred several years ago—indeed, many of the reported injuries in this study occurred several years prior and in childhood or adolescence. There is no independent confirmation of these (at least the treated ones)—there would, of course, not be a record of the untreated TBIs. Nevertheless, relying on self-report appears to be the most efficient (and perhaps the only way) obtain such data on individuals who did not receive or seek treatment for TBI.

Conflict of Interest

None declared.

References

Bazarian
J. J.
McClung
J.
Shah
M. N.
Cheng
Y. T.
Flesher
W.
Kraus
J.
Mild traumatic brain injury in the United States, 1998–2000
Brain Injury
 , 
2005
, vol. 
19
 (pg. 
85
-
91
)
Binder
L. M.
Rohling
M. L.
Larrabee
G. J.
A review of mild head injury trauma: I. Meta-analytic review of neuropsychological studies
Journal of Clinical and Experimental Neuropsychology
 , 
1997
, vol. 
19
 (pg. 
421
-
431
)
Carroll
L. J.
Cassidy
J. D.
Peloso
P. M.
Borg
J.
von Holst
H.
Holm
L.
, et al.  . 
Prognosis for mild traumatic brain injury: Results of the WHO collaborating centre task force on mild traumatic brain injury
Journal of Rehabilitation Medicine
 , 
2004
, vol. 
43
 (pg. 
84
-
105
)
Cassidy
J. D.
Carroll
L. J.
Peloso
P. M.
Borg
J.
von Holst
H.
Holm
L.
, et al.  . 
Incidence, risk factors and prevention of mild traumatic brain injury: Results of the WHO collaborating centre task force on mild traumatic brain injury
Journal of Rehabilitation Medicine
 , 
2004
, vol. 
43
 (pg. 
28
-
60
)
Comper
P.
Bisschop
M.
Carnide
N.
Tricco
A.
A systematic review of treatments for mild traumatic brain injury
Brain Injury
 , 
2005
, vol. 
19
 (pg. 
863
-
880
)
Gilchrist
J.
Thomas
K. E.
Wald
M.
Langlois
J.
Nonfatal traumatic brain injuries from sports and recreation activities—United States, 2001–2005
Morbidity and Mortality Weekly Report
 , 
2007
, vol. 
56
 (pg. 
733
-
737
)
Kay
T.
Harrington
D. E.
Adams
R.
Anderson
T.
Berrol
S.
Cicerone
K.
, et al.  . 
Definition of mild traumatic brain injury
Journal of Head Trauma Rehabilitation
 , 
1993
, vol. 
8
 (pg. 
86
-
87
)
Langlois
J. A.
Rutland-Brown
W.
Wald
M. M.
The epidemiology and impact of traumatic brain injury: A brief overview
Journal of Head Trauma Rehabilitation
 , 
2006
, vol. 
21
 (pg. 
375
-
378
)
Mittenberg
W.
Patton
C.
Canyock
E. M.
Condit
D. C.
Base rates of malingering and symptoms exaggeration
Journal of Clinical and Experimental Neuropsychology
 , 
2002
, vol. 
24
 (pg. 
1094
-
1102
)
Schulz
M. R.
Marshall
S. W.
Mueller
F. O.
Yan
J.
Weaver
N. L.
, et al.  . 
Incidence and risk factors for concussion in high school athletes, North Carolina, 1996–1999
American Journal of Epidemiology
 , 
2004
, vol. 
160
 (pg. 
937
-
944
)
Setnik
L.
Bazarian
J. J.
The characteristics of patients who do not seek medical treatment for traumatic brain injury
Brain Injury
 , 
2007
, vol. 
21
 (pg. 
1
-
9
)
Sosin
D. M.
Sniezek
J. E.
Thurman
D. J.
Incidence of mild and moderate brain injury in the United States, 1991
Brain Injury
 , 
1996
, vol. 
10
 (pg. 
47
-
54
)
Tanielian
T.
Jaycox
L. H.
Invisible wounds of war: Psychological and cognitive injuries, their consequences, and services to assist recovery
 , 
2008
Santa Monica, CA
RAND Corporation
Templer
D. I.
Kasiraj
J.
Trent
N. H.
Trent
A.
Hughey
B.
Keller
W. J.
, et al.  . 
Exploration of head injury without medical attention
Perceptual and Motor Skills
 , 
1992
, vol. 
75
 (pg. 
195
-
202
)
Thompson
H. J.
McCormick
W. C.
Kagan
S. H.
Traumatic brain injury in older adults: Epidemiology, outcomes, and future implications
American Journal of Geriatrics
 , 
2006
, vol. 
54
 (pg. 
1590
-
1595
)
Wang
P. S.
Lane
M.
Olfson
M.
Pincus
H. A.
Wells
K. B.
Kessler
R. C.
Twelve-month use of mental health services in the United States: Results from the National Comorbidity Survey Replication
Archives of General Psychiatry
 , 
2005
, vol. 
62
 (pg. 
629
-
640
)