The Phenomenology of Personality Change Due to Traumatic Brain Injury in Children and Adolescents
Abstract
The authors aimed to contribute a clinically rich description of personality change due to traumatic brain injury (PC) in children. The sample consisted of consecutively injured children. Ninety-four subjects ages 5 to 14 years were assessed at the time of hospitalization after a traumatic brain injury (TBI). A standardized psychiatric interview, the Neuropsychiatric Rating Schedule, was used to elicit symptoms of PC. PC occurred in 59% of severe (22/37) and 5% of mild/moderate (3/57) TBI subjects. Among the 37 severe TBI subjects, the labile subtype of PC was the most common (49%), followed by the aggressive and disinhibited subtypes (38% each), apathy (14%), and paranoia (5%). Also frequent in severe TBI was perseveration (35%). A detailed case example, numerous clinical vignettes of PC symptoms, and a tabulation of their frequencies provide clinicians a broader frame of reference for eliciting symptoms of PC.
Personality change due to traumatic brain injury (PC) is a DSM-IV diagnosis1 characterized by a persistent personality disturbance that is thought to be related to the direct physiological effects of a traumatic brain injury (TBI). The diagnosis is not given if the disturbance is better accounted for by another mental disorder or if it occurs exclusively during the course of delirium or dementia. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning. The terms organic personality syndrome,2 frontal lobe syndrome,3 comportmental learning disabilities,4posttraumatic chronic behavior disorder,5 and regional prefrontal syndromes6 are used in an essentially interchangeable manner with PC.
In children, PC may be manifested as a marked deviation from normal development (lasting at least 1 year) rather than a change in a stable personality pattern. Only three reports exist of PC-type behavior from unselected cohorts of children with TBI.7–9 Together, these reports show that between 16% and 40% of children with severe TBI may develop a persistent form of PC. Except for a few detailed, highly selective case reports,4,10–15 the syndrome has been described only in the briefest terms. The lack of a systematic phenomenological description of symptomatology associated with PC in children with TBI is therefore an important gap in the literature that this article attempts to fill.
We7 recently reported the characteristics of the diagnosis of PC in the childhood TBI cohort on which the present article is based. Approximately 40% of consecutively hospitalized severe TBI subjects had ongoing persistent PC an average of 2 years postinjury. A history of a remitted and more transient PC occurred in an additional 20% of subjects. PC occurred in only 5% of mild/moderate TBI cases but was always transient (<3 months). In severe TBI subjects, persistent PC was significantly associated with severity of injury, particularly impaired consciousness >100 hours. Persistent PC among severe TBI subjects was also associated with adaptive and intellectual functioning decrements. Furthermore, persistent PC was associated with a concurrent diagnosis of attention-deficit/hyperactivity disorder (ADHD) with onset after the injury (secondary ADHD). No upper age limit for secondary ADHD onset was applied. Subjects with persistent PC were more likely to be taking an anticonvulsant, stimulant, or antidepressant for psychiatric indications than were subjects with no persistent PC. The lack of a relationship between PC and any psychosocial adversity variables (e.g., socioeconomic status, family functioning, lifetime preinjury psychiatric disorder, and life events in the family) suggested that PC is a behavioral syndrome mediated by brain damage.
In this article we attempt to fill the above-noted gap in the literature and complement our previous report7 by providing a systematic phenomenological description of symptomatology associated with PC. This is achieved through a breakdown of symptoms and PC syndromes from a study of consecutive childhood TBI admissions, clinical examples, and the inclusion of an illustrative case report.16,17 Our goal is to provide a reference point for clinicians and researchers as they assess for PC in children.
METHODS
Subjects
The subjects were participants in two non-overlapping childhood TBI studies.16,17 These findings are based on a total of 94 TBI subjects for whom postinjury assessments were available. The 94 subjects included 46/49 consecutively hospitalized subjects who were enrolled prospectively (13 severe; 33 mild/moderate TBI) and 48 subjects who were retrospectively assessed (24 severe; 24 mild/moderate TBI). Table 1 presents the demographic data for all participating TBI subjects.
There were a total of 45 other eligible subjects for whom postinjury assessments were not available. In the prospective study, 40 potential subjects were not assessed (37 mild/moderate and 3 severe TBI subjects). This was primarily due to the nonparticipation of mild head injury patients (i.e., 35 potential subjects declined enrollment). In the retrospective study, only 5 severe TBI subjects were not assessed. In both the prospective and retrospective studies, these 45 nonparticipating eligible subjects (a combined total of 8 severe TBI subjects and 37 mild/moderate TBI subjects) did not differ significantly from participating subjects of their severity-class in age, gender, ethnicity, or socioeconomic status. After complete description of the study, written informed consent and assent were obtained from the parents/guardians and children, respectively.
Prospective Study
The first study was prospective. All subjects suffered a mild, moderate, or severe TBI16 Severe TBI was defined by a lowest post-resuscitation Glasgow Coma Scale (LGCS)18 score ≤8. Moderate injury was defined by a LGCS score of 9–12 or a score of 13–15 with an intracranial lesion or with a depressed skull fracture seen on the initial CT scan. Mild injury was defined by a LGCS score of 13 to 15, irrespective of any associated linear skull fracture.
Comprehensive psychiatric assessments were conducted with primary caregivers at “baseline” (mean=14.8 days after injury, SD=13.1) to assess preinjury functioning. Assessments were conducted as soon as possible after the injury on the assumption that caregivers would be less likely at that point to provide accounts biased by postinjury changes or the decay in memory over time.8 Assessments were repeated 3, 6, 12, and 24 months after TBI. Seventeen (35%) of the 49 children enrolled in this prospective study had a psychiatric disorder present at the time of the injury.
Inclusion criteria were as follows: 1) children 6 to 14 years old at time of TBI; 2) computed tomography (CT) scan of brain during hospitalization; and 3) English as first language. Exclusion criteria were as follows: 1) posttraumatic amnesia >3 months; 2) documented child abuse; 3) previous TBI involving at least one hospitalization longer than one night; 4) mental retardation; 5) other central nervous system (CNS) disorder; and 6) preexisting acute or chronic serious physical illness.
Retrospective Study
The second study was retrospective and involved a one-time assessment of subjects at varied intervals from the time of injury.17 This study included consecutively hospitalized children and adolescents with severe TBI, and an individually matched (age, gender, ethnicity, socioeconomic status, and injury-to-assessment interval) control group of mild TBI subjects. Fifteen (31%) of the 48 children enrolled in this retrospective study had a preinjury lifetime psychiatric disorder.
Inclusion criteria were as follows: 1) children 5 to 14 years old at time of TBI; 2) consecutive admissions following a severe TBI; 3) mild TBI; and 4) CT scan of brain during hospitalization. Exclusion criteria were 1) documented child abuse; 2) mild TBI patients with a prior TBI requiring an emergency room visit; 3) more than one mild TBI, in severe TBI subjects, prior to the severe TBI; 4) mental retardation; 5) other CNS disorder; 6) quadriplegia; 7) persistent vegetative state; and 8) residence more than 300 miles away.
Psychiatric Measures
The Neuropsychiatric Rating Schedule (NPRS)19 is a semistructured interview designed to identify PC symptoms and subtypes. Both parents and children served as informants in the interview. Table 2 describes the 22 symptoms rated, including ratings defining the five major PC subtypes (labile, aggressive, disinhibited, apathetic, and paranoid). A reliability and validity study19 found that the NPRS generated reliable and valid diagnoses of the PC subtypes. Good convergent validity (P<0.05 for 14/16 tests on retrospective study data) was also demonstrated for PC subtypes, using rating scale data from parents and teachers. A multitrait-multimethod bivariate correlation matrix showed good discriminant validity for PC subtypes. Interrater agreement for PC subtype items was fair to excellent (kappa scores 0.48–1.00, generally ≥0.70) for all but the paranoia item. Test-retest reliability was fair to good (kappa scores 0.56 to 0.74), and sensitivity to change was demonstrated (kappa scores –0.08 to 0.30).
We waived the one-year duration of symptomatology requirement for the diagnosis of PC to assess its empirical value. This allowed us to monitor the course of the disorder in the first year after injury. When more than one subtype of PC was present, we documented each subtype and did not simply term the syndrome “PC, combined type.” We did this to determine co-occurrence patterns of PC subtypes.
Other psychiatric diagnoses were derived by using the Schedule for Affective Disorders and Schizophrenia for School-Age Children (K-SADS).20 All interviews were administered by J.E.M., who is a board-certified child and adolescent psychiatrist.
RESULTS
A total of 25 subjects developed PC. Table 3 lists all subjects who met criteria for PC and shows the course of PC by its subtypes. This disorder occurred in 59% (22/ 37) of severe and 5% (3/57) of mild/moderate TBI subjects. The labile subtype was the most commonly occurring form of PC (18/37; 49%) among severe TBI subjects. The dominant symptom within this subtype was “marked shifts from normal mood to irritability” in 15/ 37 subjects (41%). The aggressive subtype and the disinhibited subtype were the next most common forms of PC (14/37; 38%). The dominant symptom in the latter subtype was “disinhibited vocalization/verbalization.” The remaining subtypes of PC (apathy and paranoia) occurred less frequently, in 5/37 (14%) and 2/37 (5%), respectively. Perseveration, which is not subsumed by any particular PC subtype, was another frequently occurring symptom (13/37; 35%).
Onset of PC typically occurred within the first 3 months after TBI. However, in three very serious retrospective cases, onset of PC was not noted until 3 to 6 months postinjury. The labile and aggressive subtypes frequently co-occurred. Furthermore, either of these subtypes commonly co-occurred with the disinhibited subtype. The paranoid subtype occurred transiently in 1 case and persisted in only 1 other subject. Offset of PC was noted in 6 of the 25 cases at or before 3 months. PC was followed by sustained remission in only 1 case where the disorder had persisted for at least 1 year. Within 6 months of TBI, the apathetic subtype was likely to be followed by remission. This syndrome was noted in 6 subjects and resolved in all but 2.
To facilitate the understanding of PC subtypes, it is important to provide a clinical description of subjects. First we present brief clinical examples of PC symptomatology according to the five subtypes assessed with the NPRS (see Table 2). The subjects are referenced according to the codes within Table 3 (i.e., subjects A1–12 and B1–13).
Personality Change (NPRS item #1):
The diagnostic criteria for PC recognize that children may not have a fixed personality and that a personality change per se need not be present to make the diagnosis. A marked deviation from normal development can suffice for the diagnosis. The diagnosis therefore depends on the presence of clinically significant labile, aggressive, disinhibited, apathetic, or paranoid symptoms. In this cohort, the subtypes of PC were most often of the DSM-IV “combined type” because 17/25 (68%) of the children with PC had more than one clinically significant PC subtype.
Affective Instability/Labile Subtype (NPRS items #2–9)
Affective instability was the most common subtype of PC, with nearly 50% of the sample meeting diagnostic criteria. When assessing a change in personality, we asked children and parents about a variety of changes in affective regulation. For example, subject A7 (3 months postinjury) was considered “mild-mannered, doesn't get mad anymore.” Three months later she was described as “moody, quick-tempered, insistent on her views, and persistent.” Dysregulation of a wider range of emotions also occurred: “Every emotion is magnified and intense” for subject B4. This subject was aware only of his anger and reported, “I feel meaner.” Other subjects may display predominantly dysregulation of positive emotion. Subject B6 was described as “more outgoing” and “bubbly”; subject B7 was “more loving” and hugged more.
In contrast, PC may be characterized by a problematic absence of affect. Subject B5 “lacked emotion” and was “flat.” Children may have a combination of flat affect with an excessive reactivity to certain stimuli. Subject B10 would “care only for herself” and was “self-centered and emotionless until she has a mood swing.” She was said to have a “flat mood,” “won't cry over a loss,” and did “not appreciate others' feelings.” It should be noted that changes in interpersonal style were not always considered to be due to brain damage. Subjects who decided to improve their demeanor or behavior (i.e., be nicer to people) because they had survived a life-threatening event were not diagnosed with PC.
Irritability, a component of affective instability, was the single most frequent, problematic symptom experienced in this sample (NPRS item #4). Very rapid, dramatic, and pathological shifts to irritability were observed in 41% of the sample (Table 2; see case report for an example). A constant need for attention precipitated irritability in a number of subjects. When subject B4 did not receive sufficient attention he would “get in your face.” There were numerous other antecedent stressors leading to irritability. These included sensitivity to criticism, concrete thinking, delay in gratification, unpredictability or change in routine, intellectual or concentration deficits increasing the effort in task completion, communication difficulties resulting in misunderstanding humor and instructions, and sensitivity to pain or accidental mild injury.
Inappropriate or exaggerated laughter (NPRS item #7) occurred in 24% (9 subjects). Sometimes this laughter was in response to an inappropriate stimulus and at other times came in response to an appropriate stimulus but lasted too long. A typical description of this symptom occurred in subject A4 (6 months postinjury): “He gets out of hand with laughing. He will roll backwards and laugh.” “He misunderstands some situations; he laughs when people are hurt,” but “when this is explained to him he stops.” Sudden explosive laughter without any precipitant was extremely rare in the sample. Similarly, rapid shifts between sadness and excitement (NPRS item #6) were relatively uncommon. Subject A4 would have “his tears evaporate suddenly with the slightest good thing” that happened.
Sudden euphoria or elation (NPRS item #8) occurred in only 8% of the sample. When euphoria was present it tended to be sustained as in a manic or hypomanic state21 and was related to a poor regulation of excitement. For example, when subject B8 (3 months postinjury) watched a TV show she liked, she would have a more intense reaction, feel more energetic, walk faster, clap louder, and laugh excessively. This reaction would last several minutes after she finished watching the show.
Marked shifts from normal mood to depression (NPRS item #3) were also rare and occurred in only 8% of the sample. Subject B9 took 2 hours to feel better after experiencing mild disappointment, and subject B10 talked of “suicide after little things would go wrong.” Again, not all shifts to sadness were related to brain damage or resulted in a PC diagnosis. Some subjects showed nonpathological, time-limited grief reactions while coping with rehabilitation and loss related to the injury.
Excessive, pathological crying (NPRS item #9) in response to understandable frustration or loss was evident in 7 of 37 children. For the first year and a half after the injury, subject B1 cried when corrected at school. In contrast to her preinjury status, subject B3 cried over anything sad (e.g., seeing a dead animal). Subject B10 cried easily when somebody did not agree with her. Two subjects with pathological crying (B1, B6) had an overlapping major depressive disorder, which was brief compared with the prolonged course of the pathological crying. Sudden unexpected crying, in the absence of something sad, was not seen in this cohort. This may represent an interesting difference between children and adults with brain damage.22
Rapid shifts between normal mood and anxiety (NPRS item #5) were quite rare and occurred in only 5% of the sample. Two subjects demonstrated phobic reactions or panic attacks: B1 had a phobic reaction to loud noises, and another subject without PC developed symptoms that occurred in the context of agoraphobia and panic attacks.
Aggressive Subtype (NPRS item #10)
The aggressive subtype of PC occurred in almost 40% of the sample. Aggressive acts were typically sudden, impulsive, and associated with angry affect, and they were precipitated by minor frustrations. Subject A7 (6 months postinjury) pulled a boy's hair out during class because the boy did not comply with the teacher's request to pay attention in class. At 1 year, the same subject pulled out the telephone wires and plug when her mother forgot to warn her she was leaving for a short while. The caretaker of subject A3 at 2 years postinjury reported that “he screamed at the principal” and would throw and break things (i.e., threw a bicycle in the street because he had trouble tightening a bolt). The parents of A4 (3 months postinjury) reported that he punched his brother and struck the maintenance man (a stranger) in the crotch when he pushed by to enter the house.
Notably, the DSM-IV does not discriminate between excessive anger and physically violent acts in the diagnosis of the aggressive PC subtype. However, the term explosive subtype (NPRS item #19) was used in the DSM-III-R to denote when aggression and explosive behavior were both present. This additional “subtype” was also assessed in the NPRS and occurred in 32% of the sample. When present, it tended to be the most important clinical syndrome because of the severe consequences of the child's actions.
Impaired Social Judgment Subtype (NPRS items #11–16)
The subtype “markedly impaired social judgment” in DSM-III-R is now referred to as “disinhibited” subtype in DSM-IV. This subtype occurred in 38% of the sample. Impulsivity and problems with social discourse, including impairments in pragmatics of communication, dominated the behaviors (Table 4). Specifically, the children were tactless. Some children pointed out flaws in people's anatomy, property, character, and behavior. Subject A7 described someone's “hook nose” as looking “like the wicked witch of the West.” However, these comments were rarely sadistic. The children almost always described their love for family members when asked whom they care about or love. Thus it appeared their tactlessness was not equivalent to a “lack of concern for others.” Demonstrating some understanding of the impact of her comments, subject A7 later apologized after telling someone he could lose 100 to 200 pounds.
Some children inappropriately divulged personal or family information or commented on positive attributes of strangers without regard to social convention. Inappropriate sexualized comments or behavior were also well documented. For example, subject B3 would touch his parent's genitals. These incidents occurred even in young children for whom such behavior was a drastic change from before the injury. Other children engaged in excessive talking without regarding or understanding the impact on others, including the social rejection they were bringing upon themselves. A relative lack of processing of the risk–benefit ratio of behaviors and a form of impulsivity led some children into physically hazardous situations even if they were not thrill-seeking. Impulsivity, like that displayed by patients with ADHD, was also evident and was characterized by impulsive purchases and impractical and poorly coordinated plans or activities (see case report below).
Apathetic Subtype (NPRS item #17)
The apathetic subtype comprised only a single item on the NPRS. This subtype occurred in only 14% of the sample. Subject B5 “did not care about anything.” Subject B8 “did not care to play with other kids or do anything.” She was described as “not sticking with enjoyable things and enjoying them less.”
Suspicious or Paranoid Subtype (NPRS item #18)
The paranoid subtype also consisted of a single item on the NPRS. Suspiciousness or paranoia was infrequent and occurred in only 5% of the sample. Subject B3 firmly believed that the neighbors were sending messages that his mother or father was dead. He also believed that the neighbors tried to poison him. Once posttraumatic amnesia resolved, subject A12 thought for 3 weeks that he was in a war. Intermittently he would duck under the bed and tell his family to take cover. The door had to be shut, and he would say, “I don't want them to see me.” However, the enemy was never clearly identified.
Other Symptoms Associated With PC (NPRS items #20–22)
Perseveration (NPRS item #20) occurred in 35% of the sample. Subjects constantly repeated statements or ideas to the point that their parents, siblings, or classmates became quite irritated. This repetition did not appear to bother the subjects. After subject A7 (6 months postinjury) studied pregnancy in school, she often pretended that she was pregnant and repeated this many times in the same conversation. The parents of subject B7 (1 year postinjury) felt “trapped” by him when they were in the car because he wanted to keep talking about the same thing constantly.
Delayed echolalia (NPRS item #21) was only found in the most severely impaired subject (B3) in this cohort. He repeated exact phrases he heard on TV at inappropriate times. However, he was interested in social interaction and was not autistic. This symptom probably overlapped with his perseverative tendencies.
Immaturity (NPRS item #22) was defined as “acting like a younger child.” Children with TBI frequently demonstrated behaviors characteristic of younger children or seemed like same age peers with mild to severe problems. However, in only 24% of the sample was the child's entire behavioral profile typical of a younger child.
CASE REPORT
Subject A10 (Table 3). This 14-year-old white male was thrown over the handlebars of his bicycle. He landed on his unhelmeted head on a dirt road. A baseline K-SADS conducted with his parents 7 days after his TBI revealed that he had never met criteria for a psychiatric disorder before injury. His parents described him as “well-mannered, well-behaved, and polite,” a person who “goes with the flow.” He had no history of emotional lability, violent behavior, inappropriate social judgment, apathy, or paranoia. He planned ahead, for example, by saving money for a fishing pole.
He was motivated by the challenges at school. His academic achievement was average and his preinjury score on his Iowa Test of Basic Skills Test National Percentile Rank for Vocabulary was 54.23 Soon after the injury, his schoolteacher, who had known him for 2 years, rated his preinjury behavior. She endorsed only 2 of more than 150 behavioral symptoms on the Pediatric Behavior Scale24 as occurring “often or pretty much” (i.e., “has a hard time making friends” and “quiet; doesn't talk very much”). No symptoms occurred “very often or very much.”
Before the injury occurred, the nuclear family was a well-functioning unit as assessed by a semistructured standardized family interview25 conducted soon after the injury. There was no positive family psychiatric history for first-degree relatives, but there was a positive history of alcohol abuse in a second-degree relative. Within the first 2 years of follow-up, the mother of A10 developed an episode of major depressive disorder related to the stress she experienced attempting to manage him.
The subject's LGCS was 3 and his duration of impaired consciousness (time from injury to consistently following simple commands) was 323 hours. Cumulative findings from a CT scan and MRI showed the following left-sided lesions: frontal operculum; anterior orbital frontal; posterior orbital frontal; subventricular area of orbital frontal lobe; prefrontal region; lenticular nucleus and caudate nucleus; anterior middle temporal gyrus; anterior inferior temporal gyrus; auditory region and areas anterior and posterior to the auditory region; and supramarginal gyrus.
By the 3-month follow-up, the subject was diagnosed with the labile and disinhibited PC subtypes. His parents commented on his affective lability as follows: “He gets frustrated more easily”; “he thinks he is always right; when we try to convince him otherwise he goes off to the basement in a huff”; “he is laughing much more (than before injury)—he is so tickled.” His parents reported numerous examples of disinhibition, including his approaching them with a receipt during a church service, an inappropriate place for this type of transaction. He frequently kissed mother in public, and this was an uncomfortable change for the family. He publicly noted a blemish or scratch on his aunt's necklace. He was noted to be perseverative and subclinically more talkative: “He harps on the same topics e.g., talking about his brother's speed when driving.” He continued to the point where parents had to say “Stop!!”
At the 6-month follow-up, he was diagnosed with the labile, aggressive, and disinhibited subtypes of PC and also met criteria for hypomania and ADHD with prominent symptoms of hyperactivity and inattention. Irritability was especially evident when limits were set. Usually his outbursts of anger were brief, but some were prolonged: “He was off the wall for 4 days when his broken musical instrument was not available for him to play.”
He described his mood as “fantastic.” He felt he could fly and run faster than Carl Lewis. He evidenced a flight of ideas, discussed various plans for inventions, and spent considerable time imagining he had many possessions. Goal-directed activity was increased as he kept attempting to fix things. With difficulty, he was persuaded not to repair a gas line that was determined by the gas company to be too dangerous to fix. Disinhibition and markedly impaired judgment continued to be prominent: “He laughs too much at the dinner table. He puts inappropriate things in the microwave, e.g., metal; he ran his finger over the pilot light; he tried to reach a high point on the wall to get something—so he stepped into a drawer, which almost caused the dresser to topple over onto him. He bluntly asked girls whether they had a boyfriend (without any clue of appropriate flirting).”
Eleven months postinjury he threatened suicide during an aggressive outburst. Carbamazepine was initiated, resulting in considerable improvement in his affective lability. At the 1-year follow-up, he continued to meet criteria for PC but not for mania or hypomania. He was explosive, aggressive, irritable, distractible, and had rapid speech. His parents characterized his irritability and aggression in the following ways: “He gets aggravated when instructed—he has a short fuse.” “Things out of routine upset him.” “He gets frustrated about others finding fault with him even though this was not intended.” “He will never acknowledge he is wrong.” “He pounds his head and the chairs when angry.” “He can go off at any point” for any reason. He continued to be disinhibited and impulsive and to follow through on impractical plans. Perseverative tendencies persisted (repeating catch-phrases like “what's going down”). “He is still bringing up the story of someone burping 6 months ago.” His parents reflected during rehabilitation and thereafter that he seemed to move up through the stages of childhood fairly rapidly as if he were reliving his life. He changed from being helpless, to relearning to walk and talk, then became very interested in playing with toys he had abandoned years before (e.g., playing with a sheriff's badge and holster at age 15).
Thirteen months postinjury he was diagnosed with probable complex partial seizure disorder because of several possible staring spells, but the EEG was not epileptiform. In his second year postinjury, he continued to exhibit PC with labile, aggressive, and disinhibited subtypes. However, he developed mania toward the end of the year despite continued treatment with carbamazepine. He was often extremely irritable, explosive, and aggressive toward his parents and destructive to objects (e.g., frequently pinned his mother against the wall, locked her out of the house, attempted to attack his father with a knife and tried to strangle him). He smashed the dashboard of the car and punched a hole through the door. He poured grease all over the kitchen and pounded holes in the kitchen counter. He flung books off shelves and threw chairs in various outbursts. Yet after all this violence, this boy from a religious family yelled in anger, “I wish I could swear.”
He started many projects and inventions; for instance, he destroyed a snow shovel when attempting to enhance its efficiency by adding various horizontal and vertical boards. His grandiosity was evident when he described the cure for AIDS in pages of written notes. Furthermore, he talked in public about how intelligent he was: “intelligent John Doe, John intelligent Doe, Doe intelligent John …”. Hyperactivity and distractibility were problematic. The combination of his rapid speech and flight of ideas led people to request that he repeat himself, which in turn led to angry retorts. His social judgment continued to be impaired. He told his speech therapist she needs a man or a husband to straighten her out because she is a female. His perseveration continued to be problematic. His parents stated that “he can't let go of a subject unless removed from the situation entirely.”
Between 25 and 26 months postinjury, he required two hospitalizations for aggressive outbursts and school refusal. A trial of lithium, added to the previously ineffective carbamazepine and propranolol, was associated with improvement. He was transferred to a residential facility, where his mania resolved and all medications were discontinued. He was discharged after 2 months but required a prolonged readmission after about 2 months for continued school refusal. A subtler symptom noted by the family was that “he thinks things are funnier than they are but will miss puns.”
His transition to young adulthood (ages 17 to 22; 33 to 93 months postinjury) was tumultuous even though there was no recurrence of mania or hypomania, nor any incidents of aggression toward others. The subject had psychiatric hospitalizations on five occasions for serious suicide attempts with overdoses of analgesics, sedatives, and even a household cleaner. These suicide attempts have always occurred in the midst of episodes of depression, which were invariably precipitated by disappointing news. The episodes were brief and lasted only 2 weeks. Periods of “remission” last about 2 months. He is managed on carbamazepine (reinstituted at 52 months postinjury, age 18) and on bupropion for his depression (sertraline and fluvoxamine were ineffective). carbamazepine is prescribed for psychiatric purposes since there is no evidence of seizures except for a few staring spells 1 year after injury. Furthermore, no seizures were evident even during the 2½-year period off carbamazepine.
He has lived in several highly structured residential facilities. These settings, particularly those specialized for patients with brain injuries, were effective in keeping him safe. However, on several occasions he impulsively left without notice in poorly thought-out flights to “freedom.” On one occasion, 52 months postinjury, he withdrew $100 in savings and rode out of town on a bicycle. When his progress was limited by a tire puncture, he walked along a railway line to get further out of town. He then paid a trucker $100 to drive him another 30 miles to the next city. Out of money and plans, he called his parents to rescue him. Within weeks he was living unsupervised in an apartment. He began drinking alcohol excessively for the first time and was charged with public intoxication. Next, he stole a car while intoxicated and drove it wildly late at night in 2nd gear, leaving tracks on both sides of a highway. The car caught on fire and he continued to drive it “to put out the fire” until he was caught by police and forced to spend the night in jail. He was then committed by the court for alcohol treatment, his driver's license was revoked, and he was placed on probation.
At age 22, the state of his life is very different from reasonable projections based on his preinjury status. He lives at home with his parents because he cannot function responsibly on his own, and he receives Social Security disability payments. His mother is his legal “representative payee” because of his financial irresponsibility (e.g., committing to buy a horse for $1,000 without funds to back up the purchase). He now receives an allowance of $10 per week and has reached a new equilibrium. He occupies himself on a nearby farm tending horses and refurbishing farm buildings with his father, all for no pay but with the opportunity to keep and ride his own and other horses. He does not see this as a real job because it is unpaid, and he intermittently becomes sad and irritable about his lot in life. He encourages himself, from lessons learned in various classes and psychotherapies, to believe that life is worth living. He dreams that someday he will have enough money to buy land for a horse farm. His family has thwarted further irresponsible attempts to buy another horse, and he still has years of payments to settle his current debts.
He remains on probation for driving while intoxicated and does not have a driver's license. He is motivated not to use alcohol because of an alert probation officer who reinforces the fact that he faces 6 months in jail for any future alcohol offense. This has been more effective in dissuading his alcohol use than disulfiram. Despite compliance with disulfiram, he claims that he has consumed alcohol “half a dozen times” without ill effect.
He has difficulties with organization and memory, and is easily distracted. These difficulties impair him in activities such as getting ready to leave the house and tending a busy meat counter in a supermarket. He finds it helpful to write himself reminder notes. He is irritated by noises when he attempts to concentrate, but he can read, play video games, and watch movies for hours.
At present, he is more tactful and no longer makes inappropriate personal or sexual comments. Yet, in a major change from his premorbid style, he talks excessively in a nonpressured manner. He cares for others, nurtures his young nephews, and tries to comfort his parents if they express strong emotions. However, he finds it difficult to tolerate even normal emotions that family members express. Although he does not have antisocial personality disorder, he did steal two cars (once while intoxicated and once in a quest for “freedom”). He is not a daredevil and is overly afraid of car accidents. There has been no evidence of posttraumatic stress disorder, other anxiety disorders, eating disorders, tics, use of illicit substances, persistent apathy, or paranoia.
DISCUSSION
We have provided numerous clinical descriptions illustrating the vast repertoire of potentially debilitating behaviors associated with a diagnosis of personality change due to traumatic brain injury. There were as many variants of such behaviors as there were subjects—yet they could be categorized according to subtypes of PC as described in DSM-IV. Furthermore, individual symptoms contributing to each DSM-IV subtype were effectively captured by the Neuropsychiatric Rating Schedule.
Clinical examples of PC in children or other similar disturbances, including “frontal lobe syndrome,” are rarely described in the literature. The examples provided here should help to expand the frame of reference for clinicians and researchers who wish to elicit this disorder in children.
Our findings demonstrate that PC is not a standard personality disorder with an organic etiology. Rather, it is a syndrome dominated by potentially severe affective instability, aggression, or disinhibition/markedly impaired social judgment, and occasionally by apathy or paranoia. These symptoms may be so severe and pervasive that observers may conclude that the child has undergone a “change in personality.” However, personality per se is not measured when making the diagnosis.
PC clearly overlaps symptomatically with other disorders, most commonly with ADHD and oppositional defiant disorder (ODD).7 We do not make the diagnosis of PC if the symptomatology displayed can be sufficiently explained by ADHD or ODD. For example, children with comorbid ADHD and ODD have problematic hyperactivity, impulsivity, and/or inattention as well as oppositional behavior, and they may be easily angered. The diagnosis of PC is added in these children when poor anger control is more marked than oppositional behavior per se, when disinhibited behavior as illustrated above is a problem in itself, and of course when these behaviors are a change from the child's behaviors before a serious TBI.
Another disorder with which PC overlaps symptomatically is mania or hypomania.21 Yet the disorders were quite distinguishable, as illustrated in the case report above. In our study, there were 26 subjects who showed evidence of PC or mania/hypomania at some point in a total of 39 evaluations. PC co-occurred with mania/hypomania at 6 evaluation points; PC occurred in the absence of mania/hypomania at 32 evaluations; and mania/hypomania occurred without PC at 1 evaluation.
When PC is present, it typically encompasses the most impairing symptoms in a particular child, even if other syndromes may co-occur. Many of these children are slow to learn from their mistakes. One reason for poor learning in subjects with PC is that the subjects almost invariably have poor insight regarding their condition. That is, parents reported believable affective instability, aggression, disinhibition, apathy, or paranoia, but children denied such behavior. When they acknowledged these behaviors, most children did not appear to comprehend their grave implications.
PC is a debilitating psychiatric syndrome that can be adequately captured in children by using the Neuropsychiatric Rating Schedule. More research on this syndrome is warranted to more clearly delineate classification, natural history, lesion-behavior correlates, and, ultimately, treatment.
ACKNOWLEDGMENTS
This work was supported by National Institute of Mental Health Grant 1 K08 MH01800-01 and a National Alliance for Research on Schizophrenia and Affective Disorders Young Investigator Award to Dr. Max.
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