Brain Injury, November 2012; 26(12): 1405–1414
ORIGINAL ARTICLE
Self-reported health and influence on life situation 5–8 years after
paediatric traumatic brain injury
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BARBRO RENSTRÖM1, KERSTIN SÖDERMAN2, ERIK DOMELLÖF1,3, &
INGRID EMANUELSON4
1
Kolbäcken Child Rehabilitation Centre, Umeå, Sweden, 2Department of Community Medicine and Rehabilitation,
Physiotherapy, Umeå University, Umeå, Sweden, 3Department of Psychology, Umeå University, Umeå, Sweden, and
4
Institution for Clinical Sciences, Department of Pediatrics, University of Gothenburg, Sweden
(Received 8 July 2011; revised 4 April 2012; accepted 13 May 2012)
Abstract
Primary objective: During childhood, the central nervous system is in a state of rapid development which can be interrupted
by a traumatic brain injury (TBI). This study aimed to describe if and how TBI during childhood influences health and life
situation, 5–8 years later.
Research design: A case-control retrospective design was employed for the assessment of 61 adolescents and young adults
with a mild, moderate or severe TBI and 229 matched controls from a normative group (16–24 years).
Methods and procedures: SF-36 (Short Form 36 health survey) and a self-reported questionnaire measuring life situation were
distributed to youths suffering TBI 5–8 years ago. Forty-five youths (74%) completed the questionnaires.
Main outcomes and results: Participants with a TBI stated lower self-estimated health compared with the normative group.
Remaining self-reported symptoms were physical and cognitive. Negative effects of TBI influencing school results, leisure
activities and thoughts about future life situation were also described.
Conclusion: Young individuals experience sustained negative effects of childhood TBI on health and life situation. More
research is necessary to detect, understand and properly support these youths.
Keywords: SF-36, children, adolescents, paediatric, traumatic brain injury, outcome, rehabilitation, leisure activities, school
performance, symptoms, future, questionnaire
Introduction
Traumatic brain injury (TBI) is defined as an
alteration in brain function or other evidence of
brain pathology caused by an external force [1] and
may include diagnoses such as skull fracture, contusion, laceration, haemorrhage and intracerebral
damage [2]. TBI is a common health problem and
the leading cause of death and disability in young
individuals [3, 4]. Recent estimates of incidence of
TBI show an annual rate per 100 000 population of
506 in the US, 1750 in New Zealand and 118 in
Finland due to e.g. traffic accidents, falls, sports,
leisure activities and as a result of violence, including
high incidence rates for children and adolescents [5].
In Sweden, comparable data is not available.
However, during 1987–1991, Emanuelson and von
Wendt [6] found the incidence of serious traumatic
brain injuries in children and adolescents (0–17
years) in western Sweden to be 12 per 100 000.
Traumatic brain injuries are divided into minimal,
mild, moderate and severe [7]. Individuals who
suffer from a minimal or mild TBI often leave
hospital soon after the accident with no neurological
signs [8], while those with severe damage can stay for
Correspondence: Barbro Renström, Kolbäcken Child Rehabilitation Centre, SE-907 33 Umeå, Sweden. Tel: þ46 90 785 4243. Fax: þ46 90 19 58 35.
E-mail: [email protected]
ISSN 0269–9052 print/ISSN 1362–301X online ß 2012 Informa UK Ltd.
DOI: 10.3109/02699052.2012.694559
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1406
B. Renström et al.
weeks in the intensive care unit and may sustain
long-lasting cognitive, motor and speech difficulties
[9–12]. TBI can be further divided into primary and
secondary injuries, where primary injuries result
from mechanical forces and secondary injuries
occur minutes to days after the trauma manifested
by the progression of cerebral oedema, increased
intracranial pressure and ongoing cytotoxic neural
damage [13].
The consequences of TBI are often related to the
severity of the injury [8–10, 12] but are also
dependent on other factors such as age at time of
injury, location of head injury, time since injury,
family factors and premorbid function of the child
[14, 15]. Several studies have described the consequences after TBI during childhood [11–18]. In a
5-year follow-up study on patients admitted to a
rehabilitation and re-employment programme,
Asikainen et al. [16] found that patients with
severe TBI sustained during childhood or during
early teens had poor educational attainment and
impaired social and vocational skills compared to
those with moderate or mild injuries. In keeping with
this finding, Emanuelson et al. [17] found that only
28% of those who suffered a severe TBI during
childhood functioned well in society (no sequelae) 7
years after the trauma, while the majority showed
functional consequences, with the most disabling
component being poor social integration. Further,
Asikainen et al. [16] showed that severe TBI
acquired early may have a more critical impact on
later capacity for social assimilation than severe TBI
acquired during late teens or adulthood, particularly
in combination with low educational level. However,
the same phenomenon could not be found for
moderate or mild TBI where outcomes were better
independent of age of injury and pre-injury
education.
Even if the injury is classified as mild, there are
still many symptoms and problems reported. Klonoff
et al. [18] found that 31% of individuals with a mild
TBI during childhood reported physical, intellectual
and emotional sequelaes 23 years after the injury.
Among the intellectual sequelaes, the most frequent
complaints were difficulties with learning, memory,
concentration and a decreased speed in information
processing [18].
The brain is vulnerable during childhood due to
physiological factors [2] and the central nervous
system (CNS) is immature and in a state of rapid
development. Levin [19] suggests that a disruption
of myelination through a TBI could change the
connectivity in the brain. Furthermore, Wilde et al.
[20] have shown a significant volume loss in hippocampus among children of 9–16 years, who had had
a moderate or severe TBI 1–10 years ago compared
to an aged and gender-matched control group.
This damage was present in all children studied
independent of the location of the brain injury. Since
many different variables influence the outcome, it is
difficult to predict how life changes after a TBI
during childhood. It is therefore important that
outcome measurements incorporate an individual
developmental perspective. To this date, surprisingly
few studies have highlighted what influence young
individuals themselves consider that a TBI during
childhood has had (or still has) in their lives, and
their thoughts about future life situation. However,
studies that have included investigations of healthrelated quality-of-life (HRQoL) in children and
adolescents with TBI using various self-report
instruments consistently implicate that they report
lower HRQoL than both healthy controls [21] and
clinical control groups [22–24]. Furthermore, it is
commonly agreed that more research is warranted
regarding measures of HRQoL provided by the
children and adolescents themselves to assist
improvements in the assessment of TBI outcome
and management in this population.
The aim of this study was to examine if and how
adolescents and young adults experience that a TBI
during childhood has influenced their health, ability
to participate in leisure activities, school performance and thoughts about their future life situation,
5–8 years after the trauma.
Methods
Participants
The participants included in this study were children
and adolescents who had suffered from a mild,
moderate or severe TBI between 1994–1998 and
had reached the age of 14 years at the time for the
study (2002). They were all injured before the age of
18 years. Closely after the TBI they had spent 24
hours or more at a University Hospital in the
Department
of
Paediatrics,
Neurosurgery,
Neurorehabilitation, Surgery or Orthopaedics in
northern Sweden. In total, there were 62 adolescents
that fulfilled these criteria and were included in the
study. During the time from the selection to the
actual start of the investigation one adolescent
passed away. Consequently, the study group consisted of 61 adolescents (24 females, 37 males, mean
age 19.7 3.1, years, range 14–24 years). Fourteen
(23%) had suffered a severe TBI, 28 (46%) a
moderate TBI and 19 (31%) a mild TBI. Mean time
post-injury was 6.8 1.1 years (range 4.7–8.6).
The severity of each TBI was classified according
to the Glasgow Coma Scale (GCS) which is used to
express the depth of unconsciousness. Mild TBI was
defined as corresponding to a GCS score of 13–15
and/or loss of consciousness (LOC) less than 30
Health and life situation after paediatric TBI
minutes and/or normal computer tomography (CT)
findings and/or no neurological abnormal signs or
post-traumatic amnesia (PTA) less than 30 minutes.
Moderate TBI was defined as GCS 8–12, LOC and
PTA ranging from 30 minutes to 24 hours, abnormal
CT and neurological findings. Severe TBI was
defined as a GCS below 8, LOC and PTA ranging
from 6 hours to 1 week or more [8], abnormal CT
and neurological findings.
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Normative control group
Concerning the Short Form 36 health survey
(SF-36), the participants with TBI were compared
with a control group consisting of 229 randomized
participants from a Swedish normative SF-36 group.
The groups were matched according to age and
gender. The mean age of the control group was
19.9 2.6 years (range 1624) and consisted of
60% males and 40% females in accordance with the
distribution of the study group. Participants who
were 14 or 15 years of age in the study group (n ¼ 7)
were matched with 16-year-old controls as the
control group did not include participants younger
than 16. The study was approved by the Ethics
Committee, Umeå University, and conducted in
accordance with the ethical standards specified in
the 1964 Declaration of Helsinki.
Questionnaires
SF-36. The
questionnaire
SF-36
(Medical
Outcomes Trust, Boston, MA) was used as a
measure of health. SF-36 is a multi-purpose, shortform health survey with 36 questions [25], designed
to measure both physical and mental health. The
physical components include physical function (in
terms of limitations in physical activity), physical
role (if there are problems with work or other daily
activities as a result of physical health), bodily pain
and general health. The mental components consist
of mental health (feelings of nervousness and
depressions), emotional role (if there are problems
with work or other daily activities as a result of
emotional problems), social function (interference
with normal social activities as a result of physical/
emotional problems) and vitality (feelings of fatigue). The SF-36 is scored to produce a profile of
these eight domains, each with scores ranging from
0–100, where higher scores indicate better health
status. SF-36 is tested and is a feasible and reliable
measure [26] and has an acceptable validation for
Swedish conditions [27].
Complementary questionnaire. To measure life situation, a complementary questionnaire was designed
specifically for this study. It was pilot tested by three
1407
adolescents with TBI treated with physiotherapy at a
regional rehabilitation centre and was then revised
according to their comments. The questionnaire is
divided into three parts: immediately after the brain
injury, present situation and future life situation.
The first part includes 10 questions about the need
for rehabilitation, support from school, family and
friends and whether school performance is related to
the TBI. Examples of questions are: ‘Do you believe
that you would have had need for rehabilitation/
training after your brain injury?’, ‘How pleased are
you with the support that you received from school
after the brain injury?’ and ‘To what extent do you
believe that the brain injury has affected your choice
of education?’ The second part includes seven
questions about the present situation with regard to
education, occupation, possible difficulties in leisure
and life situation and symptoms related to the TBI.
Examples of questions are: ‘Do you have any
difficulties that you associate with the brain
injury?’, ‘Does the brain injury affect what you can
do during your leisure time?’ and ‘Do you believe
that the brain injury affects your life situation?’ The
third part includes two questions focusing on
whether thoughts about the future have been
affected by the brain injury. In addition, if problems
are perceived within any dimension, the questionnaire allows the difficulty of the problems to be
graded on a 5-degree scale ranging from very small
to very severe. It is also possible to make comments
related to each question.
The SF-36 and the complementary questionnaire
were sent out to the participants as one integrated
questionnaire, starting with the SF-36.
Procedure
The participants received the questionnaire in
September 2002. After three reminders, 45 participants out of 61 (74%, 18 females and 27 males) had
completed the questionnaire and represent the final
study group. The mean age of the final study group
was 19.8 years (SD ¼ 3.1, range ¼ 1424). Eleven of
the 14 participants with severe TBI answered the
questionnaire. Corresponding figures for participants with moderate and mild TBI were 21/28 and
13/19, respectively.
All participants received instructions to ask for
help from parents or other adults if necessary.
Seventy-three per cent answered the questionnaire
by themselves and 22% with help from assistants or
parents, who also could make comments. One
participant had received help from a social worker
and one did not answer the question about help
received (5%).
Of the 16 participants who did not answer the
questionnaire (10 boys, six girls; mean age
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B. Renström et al.
19.6 3.1 years, range 14–24), seven had been
injured in traffic accidents, two had fallen and
seven had been injured during sport activities or
while playing.
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Statistics
Statistical analyses were performed using SPSS
(Statistical package for Social Science, SPSS Inc.,
Chicago, IL). For comparison between the three
severity groups of TBI (mild, moderate and severe)
and the control group, the Kruskal-Wallis test was
used at the 5% significance level. Differences
between each severity group and the control group
were analysed using the Mann-Whitney test.
Bonferroni adjustment was made for multiple comparisons. After correction the accepted p-value was
set to <0.008.
Results
The results are reported in percentages when all 45
participants have answered the actual question.
When only parts of the study group have answered,
the presented figures represent the proportion of the
current participants answering that question.
The results are described in three parts: in
connection to the TBI (the complementary questionnaire), present situation (SF-36 and the complementary questionnaire) and thoughts about
future
life
situation
(the
complementary
questionnaire).
Life situation shortly after the TBI
Support from the participant’s environment. Ninetyeight per cent had experienced good support from
their families; 76% of the participants reported good
support from their friends, while 24% had experienced poor support. Fourteen of 41 participants
(34%) were not content with the support from their
school after the TBI (severe TBI: n ¼ 5/11, moderate
TBI: n ¼ 6/19, mild TBI: n ¼ 3/11). The most
frequent complaint was the high pace of the education setting. The discontented participants reported
that the school personnel did not pay attention to
their difficulties. Furthermore, changes that had
been agreed upon were perceived as never carried
out. Twenty-seven of 41 children (66%) were
content with the support from school and reported
that understanding teachers and the opportunity to
control their study rate were important factors for
managing in school.
Consequences on school results. Nineteen of 43 participants (44%) reported that the TBI had negatively
influenced their school results (severe TBI: n ¼ 8/11,
moderate TBI: n ¼ 8/20, mild TBI: n ¼ 3/12), independent of perceived support from the school (11 of
these 19 had reported not being pleased with the
support from their school, while eight had reported
very satisfactory support). The most frequently
reported reason for the negative influence on the
school results was intellectual sequelae, such as
concentration/attention problems (n ¼ 7), learning
difficulties (n ¼ 3) and memory problems (n ¼ 3).
Among the participants with severe TBI (n ¼ 11),
eight reported that the TBI had influenced their
choice of continued education. Corresponding figures for participants with moderate and mild TBI
were 8/21 and 3/13, respectively.
Present situation
At the time for the study, 19 participants were
younger than 20 years of age and 26 participants
were older than 20 years of age. None of the
participants in the older group with a severe TBI
had progressed past the second year of high school.
Five of the 26 participants (19%) in this older group
had full or part-time employment, two (8%) were off
duty during the period of the study and two (8%)
were performing their military service. Eight participants (31%) were studying, six (23%) were unemployed and three (11%) had disability pension. Of
the 19 participants in the younger group, two (11%)
were unemployed and the remaining participants
were studying.
Health profile (SF-36). The whole TBI group had a
significantly lower score for physical function
(H(3) ¼ 13.57, p < 0.01), physical role (H(3) ¼
11.80, p < 0.01), general health (H(3) ¼ 8.97,
p < 0.05), vitality (H(3) ¼ 10.16, p < 0.05), mental
health (H(3) ¼ 9.31, p < 0.05) and social function
(H(3) ¼ 12.47, p < 0.01) compared with the normative group, but not for bodily pain and emotional role.
The outcomes of the SF-36 health measure for the
different severity groups compared with the normative group are visualized in Figure 1. Means and
standard deviations are presented in Table I. A
significant difference (U(236) ¼ 902.5, Z ¼ 2.87,
p < 0.008) was found for physical role between the
participants with mild TBI (n ¼ 13) and the normative group, in terms of a lower score for the former
compared with the latter. Further, there were lower
scores in participants with severe TBI (n ¼ 11)
compared with the normative group for physical
function (U(237) ¼ 662.5, Z ¼ 3.11, p < 0.008),
vitality (U(236) ¼ 610.5, Z ¼ 2.86, p < 0.008),
social
function
(U(239) ¼ 634,
Z ¼ 3.34,
p < 0.008) and mental health (U(236) ¼ 603.5,
Z ¼ 2.90, p < 0.008). However, no significant differences were found between the group
Health and life situation after paediatric TBI
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with moderate TBI and the normative group or
between the groups with mild, moderate and
severe TBI.
Present symptoms. According to the complementary
questionnaire, 53% of the study group reported
problems that had occurred in their lives connected
to the TBI (Table II). Some reported up to four
different symptoms. Most of these symptoms (45%)
were reported within the cognitive area and were
mainly related to memory problems. Moreover,
many physical symptoms were reported, where the
dominating symptom was pain from different parts
of the body. Behavioural problems were also
reported and three participants considered themselves as aggressive.
Influence on life situation. Fifty-one per cent of the
final study group reported that their life situation
had been affected in a negative way by the TBI
(Table III) and 38% thought that life had been
1409
affected to a high degree (severe TBI: n ¼ 8/11,
moderate TBI: n ¼ 6/21, mild TBI: n ¼ 3/13).
Participants reporting a negative effect on life situation described problems with finding a job, but also
with an impact on school results and difficulties in
everyday living. Two participants reported suicidal
thoughts and expressed tiredness of living. One
participant described paralysis and loss of speech as
problems, but expressed happiness related to still
having cognitive functions.
Influence on leisure activities. Forty-seven per cent of
the participants thought that the TBI still influenced
their leisure activities in a negative way (Table III).
One participant described sensitivity to loud music
in places where his friends wanted to go. Others
reported difficulties such as tiredness, feeling insecure because of dizziness and fear of epileptic
attacks. Some reported problems in participating in
sport activities such as dancing, horse riding and
biking.
Thoughts about future life situation
Figure 1. SF-36 mean scale scores as a function of group. Note:
Participants with TBI (aged 14–24 years) are measured 5–8 years
after mild (n ¼ 13), moderate (n ¼ 21) or severe (n ¼ 11) TBI and
compared with a Swedish normative group matched for age and
sex (n ¼ 229).
Forty per cent of the participants answered that the
TBI influenced their thoughts about the future
(Table III). They had worries both about finding a
job because of physical disabilities and not managing
education due to cognitive limitations. Others
reported worries of having epilepsy or a new TBI.
The same problems as reported in their present lifesituation were also reported when it came to
thoughts about the future life situation.
Furthermore, both participants and their relatives
emphasized that they would like to have follow-ups
with more information about consequences of TBI
and also more rehabilitation possibilities.
Table I. Mean SF-36 scores and standard deviations (SD) for participants with severe, moderate and mild TBI and a control group
matched for age and sex. Significant differences between respective TBI group and controls are highlighted in bold.
Severe TBI (n ¼ 11)
Domain in SF-36
Mean (SD)
Physical function
Physical role
Bodily pain
General health
Vitality
Social function
Emotional role
Mental health
78.6
81.8
70.4
64.9
51.4
68.2
78.8
61.5
(30.0)
(31.8)
(29.8)
(28.4)
(17.9)
(30.3)
(34.2)
(24.5)
p-value
0.002
0.494
0.291
0.035
0.004
0.001
0.190
0.004
Moderate TBI (n ¼ 21)
Mean (SD)
89.5
64.3
69.2
75.4
69.0
83.9
76.2
75.6
(15.7)
(45.1)
(38.4)
(27.1)
(24.6)
(24.4)
(41.0)
(24.2)
p-value
0.177
0.029
0.566
0.588
0.945
0.177
0.256
0.550
Mild TBI (n ¼ 13)
Mean (SD)
91.9
65.4
75.4
68.7
59.6
84.6
87.2
72.9
(12.5)
(36.1)
(21.1)
(25.9)
(23.0)
(23.5)
(25.6)
(22.2)
Control (n ¼ 229)
p-value
Mean (SD)
n
0.046
0.004
0.340
0.024
0.095
0.395
0.859
0.241
94.08 (14.5)
87.8 (24.3)
79.5 (23.9)
82.7 (18.4)
69.1 (20.4)
91.0 (17.2)
88.0 (26.3)
81.9 (17.3)
227
224
228
229
226
229
225
226
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B. Renström et al.
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Table II. Number of self-reported sequelaes and symptoms 5–8 years after TBI for participants with severe, moderate and
mild TBI.
Sequelae
Symptom/problem
Severe TBI
(n ¼ 8/11)
Moderate TBI
(n ¼ 11/21)
Mild TBI
(n ¼ 7/13)
Physical
Balance
Co-ordination
Epilepsy
Paralysis
Pain in the jaw
Pain and loss of sensation in the arms
Pain in the neck
Pain in the neck and back
Headache
Tinnitus
Loss of taste and smell
Disturbed healing
Vision problems
1
1
–
1
–
–
1
–
–
–
–
1
2
1
–
–
–
–
1
1
1
3
1
1
–
1
–
–
1*
1*
1
–
–
1
–
1
–
1
1
Cognitive
Memory problems
Tiredness
Concentration problems
Slow information processing ability
Spatial disorientation
Speech problems
6
1
1
–
1
2
5
2
3
2
–
1
1
–
–
–
–
–
Emotional
Loneliness
Depression
Aggression
1
1
1
–
–
2
–
–
–
1
–
–
Unspecified
*Participant with stroke after TBI.
Table III. Self-reported negative influences of TBI on life situation, leisure activities and thoughts about future life situation
for participants with severe, moderate and mild TBI.
Reported negative influences of TBI
Total (%)
Severe TBI
Moderate TBI
Mild TBI
Life situation
Leisure activities
Thoughts about future life situation
23 (51)
21 (47)
18 (40)
8/11
8/11
7/11
9/21
10/21
7/21
6/13
3/13
4/13
Discussion
In the present study, most of the participants (53%)
reported persistent reduced health 5–8 years after a
TBI according to SF-36 in comparison with a
normative matched control group, in keeping with
previous studies of HRQoL in children and adolescents with TBI [21–24]. Those with severe TBI
scored lower in vitality, physical function and mental
health and, above all, lower social function. This
finding is in accordance with Emanuelson et al. [17],
who reported that the most pronounced handicap
after severe childhood TBI was social integration.
Notably, the participants with mild TBI scored
lower in physical role but not in physical function
according to the SF-36 meaning that they have the
capacity to be physically active. Nevertheless, they
report difficulties to perform different activities and
they took part in fewer activities than they would
have liked to. A model by Cott et al. [28],
differentiating between current movement capability
and preferred movement capability, could offer a
deeper understanding of these findings. According to
this model, these two kinds of capabilities are usually
in balance, but after an injury the prior preferred
level may be too high and therefore not reachable. In
clinical experience, it was also found that teenagers
with TBI have to make priorities because they are
tired and lack the energy to do the same things as
they used to or would like to do. Furthermore, nearly
half of the participants with mild TBI reported that
their life situation was negatively influenced by the
TBI. Described were problems with finding jobs,
affected school results and difficulties in everyday
living. This finding corresponds to those from other
studies showing reduced health and life satisfaction
among adults after a mild TBI [29, 30].
In a study of long-term outcome after any type of
TBI among children and adults, Nestvold and
Stavem [30] reported that, 22 years after a TBI,
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Health and life situation after paediatric TBI
the individuals investigated scores lower on all SF-36
scales except for physical function compared with
the general population in Norway. Furthermore,
Klonoff et al. [18] showed that a TBI during
childhood may lead to long-lasting problems such
as physical, intellectual and emotional sequelae up to
23 years after the injury. This is in line with this
study, although their studies were made more than
two decades after the injury. Taken together, the
results make one wonder how often paediatric TBI
becomes a long-term problem?
The most frequently reported problem according
to the complementary questionnaire was different
kinds of cognitive complaints, preferentially memory
problems. This was commonly reported not only in
those with severe TBI but also among those with
moderate TBI. However, no significant differences
could be found between individuals with moderate
TBI and the matched normative group within the
results from SF-36 (Table I) as cognitive problems is
not a specific domain in the SF-36. Thus, in future
studies using this instrument it could be relevant to
also include a measure of cognitive problems.
Pain in different parts of the body was highlighted
by the participants themselves as a dominating
problem. This pain is important to take into
consideration when making rehabilitation plans.
Living with pain makes it more difficult to concentrate and probably affects the mood as well [31–33].
Pain must, therefore, be seriously examined and
treated to avoid an extra burden. This, and other
symptoms such as tinnitus and balance problems or
reduced energy that force them to make priorities,
likely help in explaining why some of the participants
were unable to continue their prior leisure activities.
Another explanation could be that those with
remaining symptoms have to avoid getting additional
head injury when playing soccer, ice-hockey, skiing
or other activities where there is a possible risk of
having a new TBI.
The majority of the participants with TBI (98%)
reported good support from their families. However,
24% reported lack of support from their friends,
associated with feelings of loneliness, suicidal
thoughts and hopelessness. It is important that
rehabilitation personnel help these young individuals
to find other types of physical exercise or present
ideas of new leisure activities that, apart from health
benefits, also could be a way to meet new friends.
Tomberg et al. [34] found that, among adults with
moderate and severe TBI, it was important to
promote coping strategies as it may have a favourable impact on health-related quality-of-life. Also,
young people with TBI have to find coping strategies
to handle their new life situation to avoid developing
low self-esteem and depression, which has been
1411
shown to occur 3–5-times more often among adults
with TBI [35].
Reduced vitality, including tiredness, was more
common in the participants with severe TBI, but not
in the groups with moderate or mild TBI. However,
according to clinical experience, tiredness is one of
the most common symptoms among all individuals
with TBI. Tiredness in combination with the pace of
learning, which was the most commonly reported
difficulty at school, can make it impossible for the
affected individuals to study at an ordinary pace. In
this study, more than 1/3 of all participants with TBI
were not pleased with the support from school after
the trauma. Despite information provided to the
teachers from caregivers and parents when the pupils
returned to school, the participants reported that the
school personnel did not take their difficulties
seriously. Furthermore, the participants reported
that changes to optimize the school situation that
had been agreed upon were not implemented. A
similar observation has also been recently reported in
individuals following neurosurgically treated childhood TBI [36].
It might be difficult to understand that individuals
with TBI have a reduced vitality that often remains
after brain damage [35], although nothing is seen on
‘the outside’. It is even more difficult to distinguish
reduced capacity and vitality in teens, as teenagers
often are tired anyway. Adolescents and young
adults with remaining problems after childhood
TBI need special arrangements at school, such as
shorter days, less pages to read and write, a quiet
environment in small groups and/or a slower study
rate and sometimes also memory aids and special
education. However, as shown in this study and by
others [36], this is not always cared for in Swedish
school settings. This finding is also in keeping with a
report from the US, showing that only 1.8% of
children discharged from acute care with cognitive
limitations were referred to special education [37].
Still, 27 out of 41 (66%) of these participants with
TBI felt content with the support from school due to
understanding teachers and the possibility to study
at their own pace. There is a discrepancy between
those who were content with the support at school
and those who were content with their study results.
Poor school performance was often explained by
problems connected to the TBI, regardless of perceived support from school. In order to handle this,
it is important to have support from the rehabilitation team and school personnel. The basis for this
should be information to the child/youth, parents,
teachers and other persons close to the young
persons. The information should be based on a
neuropsychological assessment as it shows the
strength and weaknesses of a person’s cognitive
capacity. However, few children and adolescents
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1412
B. Renström et al.
have the opportunity to be referred to a neuropsychological assessment [17,37–40]. Furthermore,
follow-ups are important because damaged areas in
the brain can make it difficult to develop an ageappropriate knowledge base, which may cause
problems in further education and in life in general
for pupils with TBI [41]. This could also be a reason
why the individuals with severe TBI older than 20
years in this study were not studying at university or
high school.
The difficulties following TBI in children and
adolescents reported in this study support the
suggestion that, even if the injury is mild, it is
important to give early information and support both
to the injured and to their parents about expected
symptoms, their likely time course and ways to cope
with the situation [42]. Tomberg et al. [34] enhance
the importance of rehabilitation, including encouraging adults with TBI to promote an active lifestyle,
and suggest a counselling system for injured persons
and their family members to integrate into social life.
This could also be a goal for rehabilitation efforts
when working with children and adolescents with
TBI. The possibilities for further rehabilitation or
support when entering adult life should be explored
when leaving the paediatric rehabilitation programme as it seems likely that problems may
become chronic. There should be follow-ups for
those in the post-acute phase who have had a
moderate or severe TBI [14] or a mild TBI resulting
in many symptoms or many days in the hospital.
According to Aaro Jonsson [36], the presence of
referral to rehabilitation and follow-ups is still
insufficient in Sweden.
A possibility for long-term rehabilitation and
support was indeed a wish from the participants
and their relatives in this study. A screening questionnaire/telephone follow-up could be one way of
finding out who will need further support and
rehabilitation, as this is difficult to predict, especially
among those with mild and moderate TBI.
Limitations of the study
In this study, the SF-36 was used to examine health.
The use of SF-36 among individuals with TBI has
been questioned because of memory problems. In
the present study, only one participant did not
participate because of great memory loss. It is,
therefore, considered that SF-36 could be useful
among adolescents and young adults with TBI, even
if the injury is classified as moderate or severe. This
has also been confirmed by at least two independent
studies [26, 43]. The complementary questionnaire
made it further possible to expand the understanding
of problems connected to a TBI at a younger age.
The
questionnaires
were
administered
to
participants of 14 years or older with TBI. This
age limit was set because it was difficult to make a
questionnaire that suited all ages. Unfortunately,
according to Dennis et al. [41] and Asikainen et al.
[16], those who are injured at a younger age seem to
have more remaining difficulties than those who are
injured during adolescence. Thus, if persons younger than 14 years had been included in this study the
amount of reported problems might have been even
higher. Optimally, the inclusion of younger children
should, therefore, be strived for in future similar
studies of childhood TBI.
In conclusion, this study shows lower selfestimated health according to SF-36 among adolescents and young adults who had had a TBI 5–8
years ago, compared with a matched normative
group. This was especially prominent in individuals
with severe or mild TBI. Surprisingly, the participants with a mild TBI scored low for the physical
role, but not for the physical function, suggesting
that they have the capacity but could not perform
as much as they would like to. The adolescents
and young adults with moderate injury had many
cognitive and physical symptoms as described in
the complementary questionnaire, but no significant differences were found in comparison with the
matched normative group as measured by SF-36.
The results from the complementary part of this
study suggest that it could be important to include
measures of pain, cognitive and physical problems
in future studies. Among the cognitive complaints
as derived from the whole group, memory deficit
was the most commonly described problem. In the
physical area, pain in different parts of the body
stood out as a dominating problem. It is considered important to treat pain early, as it otherwise
might be a remaining and disturbing consequence
which may affect an individual’s life situation
negatively. Furthermore, negative effects on
school results were described and 1/3 of the
participants reported that they were not pleased
with the support in school. Forty-seven per cent
thought that the TBI had influenced their earlier
leisure activities in a negative way and 40%
reported negative thoughts about future life situations. Coping strategies and long-term rehabilitation to support young individuals with TBI into a
satisfactory adult life together with follow-ups are
necessary. In the present study, this was also
expressed as a wish from both parents and the
participants themselves. More research is needed
to further evaluate rehabilitation efforts and effects
in relation to paediatric TBI at different levels of
severity in order to promote health and improve
support for young individuals with TBI and their
families in a satisfactory way.
Health and life situation after paediatric TBI
Acknowledgements
We are grateful to the youths for taking part in this
study.
Declaration of interest: Supported by grants from
the County Council of Västerbotten to the first
author.
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References
1. Menon DK, Schwab K, Wright DW, Maas AI. Position
statement: Definition of traumatic brain injury. Archives of
Physical Medicine and Rehabilitation 2010;91:1637–1640.
2. Pinto PS, Meoded A, Poretti A, Tekes A, Huisman TAGM.
The unique features of traumatic brain injury in children.
Review of the characteristics of the pediatric skull and brain,
mechanisms of trauma, patterns of injury, complications, and
their imaging findings – Part 2. Journal of Neuroimaging
2012;XX:1–24.
3. Kraus JF. Epidemiological features of brain injury in children:
Occurrence, children at risk, causes and manner of injury,
severity and outcomes. In: Broman SH, Michels ME, editors.
Traumatic head injury in children. New York: Oxford
University Press; 1995. pp 22–39.
4. Maas AIR, Stocchetti N, Bullock R. Moderate and severe
traumatic brain injury in adults. Lancet Neurology 2008;7:
728–741.
5. Corrigan JD, Selassie AW, Orman JA. The epidemiology of
traumatic brain injury. Journal of Head Trauma
Rehabilitation 2010;25:72–80.
6. Emanuelson I, von Wendt L. Epidemiology of traumatic
brain injury in children and adolescents in south-western
Sweden. Acta Paediatrica 1997;86:730–735.
7. Ingebrigtsen T, Romner B, Kock-Jensen C. Scandinavian
guidelines for initial management of minimal, mild, and
moderate head injuries. Journal of Trauma 2000;48:
760–766.
8. Asarnow R, Satz P, Light R, Zaucha K, Lewis R, McLeary C.
The UCLA study of mild closed head injury in children and
adolescents. In: Broman SH, Michel ME, editors. Traumatic
head injury in children. New York: Oxford University Press;
1995. pp 117–146.
9. Sakzewski L, Zivani J. Factors affecting length of hospital stay
for children with acquired brain injuries: A review of the
literature. Australian Occupational Therapy Journal 1996;43:
113–124.
10. Ewing-Cobbs L, Levin H, Fletcher J. Neuropsychological
sequele after pediatric traumatic brain injury: Advances since
1985. In: Ylvisaker M, editor. Traumatic brain injury
rehabilitation: Children and adolescents. 2nd ed. Newton,
MA, USA: Butterworth-Heinemann; 1998. pp 11–26.
11. Nelson JE, Kelly TP. Long-term outcome of learning and
memory in children following severe closed injury. Pediatric
Rehabilitation 2002;5:37–41.
12. Fletcher JM, Ewing-Cobbs L, Francis DJ, Harvey LS.
Variability of outcome after traumatic brain injury in
children: A developmental perspective. In: Broman SH,
Michel ME, editors. Traumatic head injury in children.
New York: Oxford University Press; 1995. pp 3–21.
13. Helfaer MA, Wilson MD. Head injury in children. Current
Opinion in Pediatrics 1993;5:303–309.
14. Anderson V, Catroppa C, Morse S, Haritou F, Rosenfeld J.
Functional plasticity or vulnerability after early brain injury?
Pediatrics 2005;116:1374–1382.
1413
15. Anderson V, Dudgeon P, Haritou F, Catroppa C, Morse SA,
Rosenfeld JV. Understanding predictors of functional recovery and outcome 30 months following early childhood head
injury. Neuropsychology 2006;20:42–51.
16. Asikainen I, Kaste M, Sarna S. Patients with traumatic brain
injury referred to a rehabilitation and reemployment programme: Social and professional outcome for 580 Finnish
patients 5 or more years after injury. Brain Injury 1996;12:
883–889.
17. Emanuelson I, von Wendt L, Beckung E, Hagberg I. Late
outcome after severe traumatic brain injury in children and
adolescents. Pediatric Rehabilitation 1998;2:65–70.
18. Klonoff H, Clark C, Klonoff PS. Long-term outcome of head
injuries: A 23 year follow-up study of children with head
injuries. Journal of Neurology and Neurosurgical Psychiatry
1993;56:410–415.
19. Levin HS. Neuroplasticity following non-penetrating traumatic brain injury. Brain Injury 2003;17:665–674.
20. Wilde EA, Bigler ED, Hunter JV, Fearing MA, Scheibel RS,
Newsome MR, Johnson JL, Bachevalier J, Li XQ, Levin HS.
Hippocampus, amygdala, and basal ganglia morphometrics
in children after moderate-to-severe traumatic brain injury.
Developmental Medicine & Child Neurology 2007;49:
294–299.
21. Souza LM, Braga LW, Filho GN, Dellatolas G. Quality of
life: Child and parent perspectives following severe traumatic
brain injury. Developmental Neurorehabilitation 2007;10:
35–47.
22. Erickson SJ, Montague EQ, Gerstle MA. Health-related
quality of life in children with moderate-to-severe traumatic
brain injury. Developmental Neurorehabilitation 2010;13:
175–181.
23. Stancin T, Drotar D, Taylor HG, Yeates KO, Wade SL,
Minich NM. Health-related quality of life of children and
adolescents after traumatic brain injury. Pediatrics 2002;109:
e34. Available online at: pediatrics.aappublications.org,
accessed 9 February 2012.
24. Horneman G, Folkesson P, Sintonen H, von Wendt L,
Emanuelson I. Health-related quality of life of adolescents
and young adults 10 years after serious traumatic brain injury.
International Journal of Rehabilitation Research 2005;28:
245–249.
25. Ware J, Sherbourne C. The MOS 36-item Short Form
Health Survey (SF-36). Conceptual framework and item
selection. Medical Care 1992;30:473–483.
26. Findler M, Cantor J, Haddad L, Gordon W, Ashman T. The
reliability and validity of the SF-36 health survey questionnaire for the use with individuals with traumatic brain injury.
Brain Injury 2001;15:715–723.
27. Sullivan M, Karlsson J, Ware JE. The Swedish SF-36 Health
Survey: I. Evalution of data quality, scaling assumption,
reliability and construct validity across general populations in
Sweden. Social Science Medical 1995;41:1349–1358.
28. Cott CA, Finch E, Gasner D, Yoshida K, Thomas SG,
Verrier MC. The movement continuum theory of physical
therapy. Physiotherapy Canada 1995;47:87–95.
29. Emanuelson I, Andersson Holmqvist E, Björklund R,
Stålhammar D. Quality of life and post-concussion symptoms
in adults after mild traumatic brain injury: A populationbased study in western Sweden. Acta Neurologica
Scandinavica 2003;108:332–338.
30. Nestvold K, Stavem K. Determinants of health-related
quality of life 22 years after hospitalization for traumatic
brain injury. Brain Injury 2009;23:15–21.
31. Tham SW, Palermo TM, Vavilala MS, Wang J, Jaffe KM,
Koepsell TD, Dorsch A, Temkin N, Durbin D, Rivara FP.
The longitudinal course, risk factors, and impact of sleep
1414
32.
33.
34.
35.
Brain Inj Downloaded from informahealthcare.com by University of Montreal on 12/05/14
For personal use only.
36.
37.
B. Renström et al.
disturbances in children with traumatic brain injury. Journal
of Neurotrauma 2012;29:154–161.
Nicholson K. Pain, cognition and traumatic brain injury.
NeuroRehabilitation 2000;14:95–103.
Kirkwood MW, Yeates KO, Taylor HG, Randolph C,
McCrea M, Anderson VA. Management of pediatric mild
traumatic brain injury: A neuropsychological review from
injury through recovery. The Clinical Neuropsychologist
2008;22:769–800.
Tomberg T, Toomela A, Pulver A, Tikk A. Coping strategies, social support, life orientation and health-related quality
of life following traumatic brain injury. Brain Injury 2005;19:
1181–1190.
Andelic N, Hammergren N, Bautz-Holter E, Sveen U,
Brunborg C, Roe C. Functional outcome and health related
quality of life 10 years after moderate-to-severe traumatic
brain injury. Acta Neurologica Scandinavica 2009;120:16–23.
Aaro Jonsson C. Long- term cognitive outcome of childhood traumatic brain injury. [dissertation]. Stockholm,
Sweden: Stockholm University; 2010. p 74. ISBN 978–91–
7447–054–3.
DiScala C, Scott Osberg J, Savage RC. Children hospitalized
for traumatic brain injury: Transition to postacute care.
Journal of Head Trauma Rehabilitation 1997;12:1–10.
38. Hawley CA, Ward AB, Magnay AR, Long J. Outcomes
following childhood head injury: A population study. Journal
of Neurology, Neurosurgery and Psychiatry 2004;75:
737–742.
39. Cronin AF. Traumatic brain injury in children: Issues in
community function. American Journal of Occupational
Therapy 2001;55:377–384.
40. Bowen JM, Clark E, Bigler ED, Gardner M, Pompa J,
Nilsson D, Gooch J. Childhood traumatic brain injury:
Neuropsychological status at the time of hospital discharge.
Developmental Medicine & Child Neurology 1997;39:
17–25.
41. Dennis M, Wilkinson M, Koski L, Humphreys RP. Attention
deficits in the long term after childhood head injury. In:
Broman SH, Michel ME, editors. Traumatic head injury in
children. New York: Oxford University Press; 1995.
pp 165–187.
42. Ponsford J, Willmott C, Rothwell A, Cameron P, Ayton G,
Nelms R, Curran C, Ng K. Impact on early intervention on
outcome after mild traumatic brain injury in children.
Pediatrics 2001;108:1297–1303.
43. Colantonio A, Dawson DR, McClellan BA. Head injury in
young adults: Long- term outcome. Archives of Physical and
Medical Rehabilitation 1998;79:550–558.