Journal of Neuroscience Nursing:
Symptoms Associated With Mild Traumatic Brain Injury/Concussion: The Role of Bother
Bergman, Karen; Given, Barbara; Fabiano, Robert; Schutte, Debra; von Eye, Alexander; Davidson, Scott
Questions or comments about this article may be directed to Karen Bergman, PhD RN CNRN, at email@example.com. She is an Assistant Professor at Western Michigan University and a Neuroscience Coordinator at Bronson Methodist Hospital, Kalamazoo, MI.
Barbara Given, PhD RN FAAN, is a University Distinguished Professor at Michigan State University, East Lansing, MI.
Robert Fabiano, PhD, is a Psychologist at PAR Rehabilitation, Lansing, MI.
Debra Schutte, PhD RN, is an Associate Professor at Michigan State University, East Lansing, MI.
Alexander von Eye, PhD, is a Professor at Michigan State University, East Lansing, MI.
Scott Davidson, MD, is a Trauma Surgeon at Bronson Hospital, Kalamazoo, MI.
The authors declare no conflicts of interest.
ABSTRACT: Traumatic brain injury (TBI) affects 1.4 million Americans annually, and mild TBI (MTBI) accounts for approximately 75% of those injured. For those with mild injury who seek treatment in an emergency department, there is inconsistency in the management and follow-up recommendations. Approximately, 38% of patients treated in the emergency department for MTBI are discharged with no recommendations for follow-up. In addition, there are an unknown number of persons with MTBI who do not seek healthcare after their injury. Persons with MTBI are, for the most part, managing their concussion symptoms on their own. The purpose of this study was to describe the symptom experience for persons with mild TBI and identify whether there was an association between being bothered by symptoms and self-management of symptoms. The sample for this study included 30 persons with MTBI and a 30-person comparison group. Results indicate that persons within 3 months of their MTBI report an average of 19 symptoms, whereas the comparison group reported six symptoms, and that the most frequently reported symptoms are not always the symptoms rated as most severe or most bothersome. Persons with MTBI reported their most common symptoms to be headache (n = 25, 83%), feeling tired (n = 24, 80%), difficulty thinking and being irritable (each n = 22, 73%), dizziness, trouble remembering, and being forgetful (each n = 21, 70%). There is a significant relationship between overall reports of being bothered by symptoms and the use of symptom management strategies (F = 8.322, p = .008). Persons are more likely to use symptom management strategies when they are bothered by the symptoms. Nurses can assist with symptom self-management by providing simple symptom management strategies to assist with the symptom management process. Early symptom management for the MTBI population may improve the outcomes such as return to work and role functions, for this population.
Up to 62% of persons report at least one symptom after their MTBI with 44% reporting one or more symptom at 3 months postinjury (Lannsjö, Geijerstam, Johansson, Bring, & Borg, 2009). Among the most commonly rep orted symptoms after MTBI are headache, dizziness, anxiety, and fatigue (Lannsjö et al., 2009; Lundin, De Boussard, Edman, & Borg, 2006; Yang, Tu, Hua, & Huang, 2007). It is unknown whether certain symptoms are more bothersome than other symptoms and thus may become the target of symptom self-management.
Mild traumatic brain injury (MTBI) can be defined by a Glasgow Coma Scale score of 13–15 and one or more of the following: confusion or disorientation, loss of consciousness for 30 minutes or less, posttraumatic amnesia for less than 24 hours, and/or other transient neurological abnormalities (Carroll et al., 2004). Because MTBI accounts for approximately 75% (Centers for Disease Control [CDC], 2006) of the 1.7 million brain injuries per year (Faul, Xu, Wald, & Coronado, 2010), the annual prevalence is very high. Most persons with MTBI are treated and released from emergency departments or do not seek healthcare for their injury. Although there are an approximately 1,365,000 emergency department visits for TBI annually, there are an unknown number of persons who sustain an MTBI and do not seek care (Faul et al., 2010); thus, the true incidence of this injury is unknown. MTBI may be caused by falls, motor vehicle trauma, being struck by something, hitting head on something, assaults or intentional head trauma (including blast injury), and sports-related injuries (CDC, 2006; Faul et al., 2010). Although symptoms are expected to resolve in days to weeks, these symptoms may be quite bothersome to the person experiencing them and may be difficult to manage.
Approximately 5.3 million Americans are disabled from TBI, with the CDC estimating direct and indirect costs at $60 billion (Finkelstein, Corso, Miller, & Associates, 2006). Whereas those with more severe injuries are almost always referred for rehabilitation (Van Baalen, Odding, & Stam, 2008), those with milder injury are usually not following up with rehabilitation specialists (Blostein & Jones 2003; Van Baalen et al., 2008). Persons with MTBI are therefore left to manage the symptoms associated with their injuries on their own. It is unknown whether being bothered by symptoms leads persons to self-manage their symptoms after MTBI.
Symptoms are defined by Dodd et al. (2001) as “a subjective experience reflecting changes in the biopsychosocial functioning, sensations, or cognition of an individual.” Symptoms are important cues to let persons know that changes have occurred that may require attention or management. Symptoms can be evaluated by persons experiencing them in terms of their presence, intensity or severity, duration, or by how bothersome they are (Dodd et al., 2001). For the MTBI population, most of what is known about symptoms is about presence of symptoms after injury, most commonly obtained as self-reported symptoms. The bothersome nature of symptoms has not been described for MTBI, and gaining information on this dimension of symptoms may be useful in future symptom management plans because, if certain symptoms are considered very bothersome by persons after MTBI, then targeting those bothersome symptoms in patient education may be beneficial.
Previous research on symptoms with persons after TBI has established that symptoms for those with mild injury follow a trajectory toward resolution of symptoms within weeks (for milder, noncomplicated injuries) to months (longer recovery for those with advanced age and complicated injuries, i.e., other trauma-associated fractures or injuries; Alexander, 1995; Dikmen, Machamer, & Temkin, 2001; Lannsjö et al., 2009; Lundin et al., 2006; Ponsford, Cameron, Fitzgerald, Grant, & Mikocka-Walus, 2011; Yang et al., 2007). Predictors of prolonged symptoms after TBI include skull fracture, increased serum 100B (a protein shown to correlate with brain injury severity) levels, dizziness, or headache complaints (Faux, Sheedy, Delaney, & Riopelle, 2011) immediately after injury (de Kruijk et al., 2002; Savola & Hillbom, 2003). Litigation, seeking financial compensation, and preinjury psychological issues (Kashluba, Paniak, & Casey, 2008) as well as anxiety, noise sensitivity, and female gender have been identified as predictors of prolonged symptom complaints after MTBI.
Although those individuals most severely disabled from TBI are almost always referred for rehabilitation, those with milder injury are often left to manage their injury-associated symptoms on their own despite reports of the bothersome nature of sequelae.
According to the UCSF Symptom Management Model, the symptom experience includes perception, evaluation, and response to symptoms (Dodd et al., 2001). Determining how bothersome or disruptive to daily life a symptom is to the individual experiencing it is part of the symptom evaluation. Several studies, although not in the MTBI populations (Dunn & Croft, 2005; Fultz et al., 2003; Hockenberry et al., 2003; Lee, Lee, Han, Choo, & Lee, 2011), report on the symptom experience of bother or most bothersome symptoms and report that the most frequently reported symptoms are not necessarily the most bothersome symptoms. In addition, more bothersome symptoms may be the target of symptom management. For this study, bothersome refers to a symptom being disruptive to daily functioning (Kay, Cavallo, Ezrachi, & Vavagiakis, 1995; O’Leary, 2005). Adding a dimension such as bothersome to the knowledge base about the symptom experience will contribute to the science of symptom management. It is possible that persons may seek treatment either via healthcare providers or through self-management for those MTBI symptoms that bother them most, as opposed to those that are most frequently reported. Differentiating symptoms by characteristics such as bothersome as compared with other terms such as frequency may aid in our understanding of the symptom self-management process for this population.
The bothersome nature of symptoms associated with TBI has not been described. Conceptually and operationally, there are many ways to describe post-TBI symptoms, with frequency and duration being the most well-described aspects of the symptom experience. Beyond what symptoms are present and how long they might last, the bothersome nature of symptoms should be explored to better understand whether certain symptoms are more disruptive to daily life than others. If, for example, dizziness is reported by all who experience it to be “very bothersome,” then it may be beneficial for healthcare providers to equip persons with TBI with information or tools that will be useful to help alleviate dizziness. How bothersome symptoms are may also be affecting person’s desire or motivation to self-manage their symptoms or seek professional help to relieve the bothersome symptoms. This was the case with the previously described studies of men with prostate disease and urinary tract symptoms, where they only sought treatment when symptoms were most bothersome.
For persons who are within 3 months of their MTBI using patient self-reports, this study aims to:
1. identify bothersome symptoms; and
2. determine if there is a relationship between being bothered by symptoms and use of symptom self-management strategies.
This study will seek to identify if the MTBI population rates certain symptoms as more bothersome than others and if being bothered by symptoms affect the use of symptom management strategies, to better understand the symptom experience for this population.
Design and Methods
Thirty persons with MTBI and 30 persons without brain injury were recruited to participate in the study. Persons with MTBI were within 3 months of their time since injury to capture a time-frame where symptoms and symptom management strategies are most likely to be present (mean days = 50.6, SD = 37.27). The demographics of both the MTBI and comparison groups are shown in Table 1. Groups were intentionally matched on age, gender, and education. The problem checklist was used as the measurement tool to ask if persons had the symptom (43 symptoms common to MTBI) and, if they had the symptom, how severe it was and how bothersome it was. Correlation analysis, frequency analysis, and general linear model analysis were used to answer the research questions as follows:
1. What symptoms are present and rated as most severe and bothersome?
2. What is the association between being bothered by symptoms and the use of symptom management strategies?
Thirty persons with MTBI participated in the study, and 30 persons matched on age, gender, and education participated as the comparison sample. Both groups had more women (24 and 21, respectively) than men (6 and 9, respectively) participants. Average age was 39 years for the sample group and 41 years for the control group. Groups were matched on education with p = .738.
Frequency of Symptoms
Symptoms endorsed as most frequent by the MTBI group include headache (n = 25, 83%), being tired (n = 24, 80%), difficulty thinking (n = 22, 73%), and being irritable (n = 22, 73%). Symptoms endorsed most frequently by the comparison group include headache (n = 12, 40%), sleep disturbance (n = 8, 27%), distractible (n = 8, 27%), and loss of temper and being forgetful (n = 7, 23%). The frequencies of reported symptoms as well as the mean scores for severity and bother are summarized in Table 2.
Bothersome Nature of Symptoms
Tables 3–5 show the most frequently reported symptoms, the symptoms endorsed as most severe, and the symptoms endorsed as most bothersome. Headache was endorsed as the most frequent symptom among persons with MTBI, was also the most severe (mean severity rating = 2.04, range = 0–4), and had a high bothersome rating of 2.52. Although this was not the highest bothersome rating, it is among the top 2 in the bothersome category, and one can see the trend across frequency, severity, and bothersome for this symptom.
Twenty-four of thirty persons with MTBI reported being tired; however, they did not rate the symptom as severe or as bothersome as other symptoms. Being tired had a mean severity score of 1.5 and mean bother score of 1.67. Being forgetful is a symptom that was endorsed as both severe and bothersome with mean ratings of 1.90 and 2.55, respectively. In this situation, being forgetful was not the most commonly endorsed symptom, but for those who had it, they felt it was both severe and bothersome or disruptive to their daily lives. Feeling like they are doing things more slowly (mean bothersome rating = 2.16) and loss of confidence (mean bothersome rating = 2.08) were endorsed in the top 5 most bothersome items to those with MTBI that were not endorsed as a frequent symptom nor a severe symptom.
Spearman correlation was used to compare the sum scores of severe and bother of the MTBI group to identify if they are correlated. Spearman’s rho (28) = .960, p = .000, and n = 30, indicating that, for this group, severe and bother are significantly correlated. Spearman correlation for the comparison group produced similar results with Spearman’s rho (14) = .899, p = .000, and n = 16 (only 16 persons in the comparison group reported symptoms). The combined groups’ Spearman’s rho (44) = .961, p = .000, and n = 46 also produced results similar to the separate groups, indicating that severe and bother are significantly correlated.
General linear model was used with the sum score of bothersome as the dependent variable, the sum score of severe as the independent variable, and the covariates entered of age, gender, education, and group. These results indicate that there is a significant relationship between severity and bother, with severity explaining 91%, (r2 (1, 21) = 91, p = .000) the variance of the bothersome score in the model. There is no significant effect from age (F(1,21) = .636, p = .432), gender (F(1, 21) = .088, p = .769), education (F(5, 21) = .145, p = .980), or group (F(1, 21) = .141, p = .732). Parameter estimates show the beta of 1.015 (p = .000) indicating that, for each change in one unit on the severity score, there would be a 1.015 change on the bothersome score.
Bother and Self-Management
To determine the association between bother and the use of symptom management strategies, general linear model was used with the dependent variable of the sum score of use of symptom management strategies, the independent variable of the sum scores of bother, and the covariates of age, gender, education, and group. Results of this analysis show that there is a significant relationship between overall reports of being bothered by symptoms and the use of symptom management strategies, F(1, 51) = 8.322, p = .008. There were no significant relationships with the covariates of age, F(1, 51) = .398, p = .534; gender, F(1, 51) = .030, p = .864; education, F(5, 51) = .539, p = .745; or group, F(1, 51) = .095, p = .761.
Bothersome refers to how much a symptom is evaluated as being disruptive to person’s daily life (Kay et al., 1995; O’Leary, 2005). Knowing how much persons are bothered by symptoms may add depth to our current knowledge of MTBI symptoms, which is largely about what symptoms are experienced. Severity or intensity of symptoms are sometimes reported (Lannsjö et al., 2009); however, it is unknown what the relationship between severity and bothersome is. Are symptoms that are severe also bothersome? This study sought to describe what symptoms are present, severe, and bothersome to add to the knowledge about post-MTBI symptoms.
Although there was some overlap between symptom frequency, severity, and bother, there were also differences that should be noted and are represented in Tables 2–5. From the descriptive analysis, we have identified that those symptoms rated most frequently are not those that are necessarily rated as most severe or bothersome. For this reason, when assessing symptoms either in clinical settings or in research, it may be best to include other measures of symptoms beyond having the symptom, such as severe or bothersome ratings as well. Severity and bothersome are ways to evaluate a symptom; thus, it is reasonable that they are correlated. Those symptoms rated as most severe are not always the most bothersome, although some are. Evaluating symptoms with multiple questions such as frequency, severity, and bothersome provides more information about the presence and evaluation of symptoms and may be helpful in making clinical decisions about symptom management as well as in research studies.
In healthcare, assessing symptoms of patients by more than just the presence of the symptom can be useful in identifying symptoms that may be most important for each patient to address with symptom management strategies. For instance, if a person reports their dizziness to be present only once per week and states that it is not severe but is highly bothersome because they cannot drive or work while dizzy, then for that patient, it may be best to target that symptom for management so that they can return to their normal roles.
Bothersome has been used as a component of symptom evaluation in the chronic illness populations. O’Leary (2005) describes the use of a “bother score” to evaluate symptoms for benign prostatic hyperplasia and supports the importance of bother as playing a central role in decision making for persons to seek treatment of their symptoms. The O’Leary study was a multinational survey of aging men (MSAM-7) study and reports that 90% of the respondents had lower urinary tract symptoms, wherein only 19% sought medical care and only 11% were medically treated (Rosen et al., 2003), thus supporting the importance of assessing bothersome symptoms with the findings that the (1) most common symptoms are not necessarily the most bothersome, (2) symptoms that are the most disruptive to daily life are those rated as most bothersome, and (3) persons reported significant differences in the degree that they are bothered by symptoms. These MTBI study results indicating that the most frequent symptoms are not always being endorsed as the most bothersome support the findings of the O’Leary study and that the additional questioning of persons about their symptoms being bothersome can be beneficial.
Being bothered by a symptom may lead persons to want to manage that symptom. As in the previous example of dizziness, if a person is bothered by a symptom and it is disruptive to his or her daily life, he or she may be more motivated to try to have symptom relief through the use of symptom self-management. As mentioned, the O’Leary study on benign prostatic hypertrophy showed that being bothered by a symptom made men more likely to seek treatment for their symptoms. Seeking treatment or managing symptoms on your own when persons are sufficiently bothered by the symptom makes good intuitive sense; however, this has not been explored in the MTBI literature.
For this study, general linear model was used to identify the relationship between bother and use of symptom management strategies for each of the symptoms in the symptom self-management questionnaire. This study found that there is a significant association between bother and use of symptom management strategies. The way persons evaluate symptoms, such as frequency, severity, and bother, is a part of the symptom experience component of the UCSF Symptom Management Model that guides this research. In the model, the symptom experience is related to symptom management strategies such that the ways that persons evaluate their symptoms is associated with their use of symptom management strategies. This relationship is supported by the results of this research where the overall evaluation of symptoms as bothersome is associated with use of symptom management strategies. Using this knowledge, healthcare providers can ask about symptoms from different perspectives, such as frequency, severity, or bother, to better understand the symptom experience and then either assist with symptom management or guide symptom self-management based on what persons are experiencing.
Healthcare providers assisting persons with MTBI to self-manage their symptoms can use bothersome as a guide to help persons know when to try self-management strategies. For instance, if someone is having a headache but it is not bothersome to them, but fatigue is bothering them very much, then target the fatigue symptom so that they can better return to their daily activities. Healthcare providers would require education based on current evidence to support a change in practice to include questioning persons about being bothered by symptoms. Publication of studies such as this one is a beginning step to change the practice.
There has been an increase interest in the mild brain injury population in recent years because of increasing suspicions about the long-term effects of concussion on NFL players to the possibility of a fatal second impact syndrome that impacts adolescents in sports and the increasing awareness of military personnel sustaining brain injuries in blast- and nonblast-related incidents. Through this increase in awareness, several groups have worked to develop guidelines for the management of MTBI/concussion. The American Association of Pediatrics (Halstead, Walter, & Council on Sports Medicine and Fitness, 2010), the Veterans Administration (Department of Veterans Affairs and Department of Defense, 2009), and the American Association of Neuroscience Nurses (American Association of Neuroscience Nursing, 2011) have all developed guidelines. In addition, the International Symposia on Concussion in Sports has established guidelines for the sports injury population (McRory et al., 2009). These guidelines can be very helpful to healthcare providers in the development of management guidelines within institutions and will ideally help to limit the variation in care and management of MTBI that has existed in the past (Blostein & Jones, 2003). The guidelines are written to assist healthcare professionals and are not written at a literacy level appropriate for the general public. The development and implementation of a symptom management toolkit would use information from the guidelines that are supported by levels of evidence, along with the results of this study, to create helpful symptom self-management strategies that are easily understood by most of the population.
The role of bother in the symptom management process requires further investigation. In this study, overall, there was a relationship between being bothered by symptoms and the use of symptom management strategies. The use of larger sample size would help to better understand this relationship. If it is further supported that being bothered by symptoms is the driving force behind attempting to manage symptoms, then asking that question to persons during assessment of MTBI would be useful. In addition, when educating persons about symptom management strategies, healthcare providers could discuss with persons with MTBI that they may be more bothered by some symptoms than others and that focusing their self-management strategies on those symptoms that are most bothersome may be beneficial.
Although there are guidelines for the management of MTBI, the use of the guidelines is unknown and healthcare providers at this time are not mandated to follow them. There are known inconsistencies in the management of MTBI (Blostein & Jones, 2003), and the consistent use of guidelines would reduce the inconsistency and improve care for persons with MTBI. Ideally, large groups and organizations such as the American Association of Neurology, Academy of Emergency Department Physicians, American Association of Neuroscience Nurses, Trauma Nurses Society, and others can continue to endorse the use of guidelines and improve the outcomes of persons with MTBI. One way to streamline the care of persons with MTBI would be to offer healthcare services through concussion clinics. These clinics could utilize the current guidelines for management and continue to research the symptom experience and outcomes for person with MTBI.
Because not all persons with MTBI seek treatment, another area of research would be to explore ways to make information such as a symptom management toolkit available to persons outside of the healthcare setting. Various sources of advertisement about how persons can locate the toolkit would be necessary to spread the word of its availability. There also could be a link to the toolkit from common MTBI sites such as the CDC’s “Heads Up on Concussion” site. Monitoring of the Web site hits could be done to determine the amount of visits to the Web site, and a survey about the use of the toolkit could be offered on the Web site as well. The toolkit could be made available in paper copies available at healthcare settings and available to download to computers or smartphones. Larger sites such as the CDC or the American Association of Neuroscience Nurses could sponsor the toolkit and advertise and distribute them to a wide population. Ongoing research regarding the use and helpfulness of the toolkit would be warranted.
The sample size for this study was 30 persons with MTBI and 30 persons to serve as a comparison group, so the small sample size limits the generalizability of the results to the overall MTBI population. This study design was a cross-sectional study interviewing persons within 3 months of their time since injury. This provides a single time point for evaluation of symptoms, self-management, and effectiveness.
This study described the bothersome nature of symptoms and evaluated the association between bother and the use of symptom management strategies. Results from this study can be used to improve our understanding of the symptom experience for persons with MTBI. Once we have a better understanding of symptoms and the degree to which persons are bothered by symptoms, interventions can be tailored to target the most bothersome symptoms to improve outcomes. Having information about the bothersome nature of symptoms, patient education can be improved regarding MTBI-related symptoms and how to manage symptoms once they leave the healthcare setting. Improving the ability for persons to manage symptoms on their own may improve person’s ability to return to their roles and improve outcomes for this population.
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Keywords: bother; brain injury; concussion; symptoms
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