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Longitudinal Follow-Up of Patients
with Traumatic Brain Injury:
Outcome at Two, Five, and Ten Years Post-Injury
Jennie L. Ponsford,
1–4
Marina G. Downing,
1,2
John Olver,
4,5
Michael Ponsford,
4
Rose Acher,
4
Meagan Carty,
2,4
and Gershon Spitz
1,2
Abstract
The deleterious consequences of traumatic brain injury (TBI) impair capacity to return to many avenues of pre-morbid
life. However, there has been limited longitudinal research examining outcome beyond five years post-injury. The aim of
this study was to examine aspects of function, previously shown to be affected following TBI, over a span of 10 years. One
hundred and forty one patients with TBI were assessed at two, five, and 10 years post-injury using the Structured Outcome
Questionnaire. Fatigue and balance problems were the most common neurological symptoms, with reported rates de-
creasing only slightly during the 10-year period. Mobility outcomes were good in more than 75% of patients, with few
participants requiring aids for mobility. Changes in cognitive, communication, behavioral, and emotional functions were
reported by approximately 60% of the sample at all time points. Levels of independence in activities of daily living were
high during the 10-year period, and as many as 70% of subjects returned to driving. Nevertheless, approximately 40% of
patients required more support than before their injury. Only half the sample returned to previous leisure activities and
fewer than half were employed at each assessment time post-injury. Although marital status remained stable over time,
approximately 30% of participants reported difficulties in personal relationships. Older age at injury did not substantially
alter the pattern of changes over time, except in employment. Overall, problems that were evident at two years post-injury
persisted until 10 years post-injury. The importance of these findings is discussed with reference to rehabilitation
programs.
Key words: functional outcome ; structured outcome questionnaire; traumatic brain injury
Introduction
M
any studies have examined long-term functional outcome
following traumatic brain injury (TBI).
1–5
Changes in neu-
rological, physical, cognitive, and behavioral functioning are
common, although considerable variability is evident, which is
influenced by the severity of the brain injury.
6–12
While some of
these changes resolve within the first six months after injury, some
have been shown to persist for many years.
10,13,14
Understanding long-term outcome is important as TBI most
commonly occurs in young adults who survive for decades in
societies that tend to equate disability with the elderly or devel-
opmentally disabled.
15
While most of the research has been
cross-sectional or retrospective in design, several prospective lon-
gitudinal studies have assessed participants with TBI on two or
more occasions, documenting symptoms and/or changes in func-
tional status (see Table 1.
2,3,16–23
Studies of serial cognitive testing
are beyond the scope of this paper and have not been reviewed).
The results of these studies indicate that there is gradual im-
provement in functional outcome in terms of capacity for inde-
pendent living and functioning in daily activities, work, or leisure
activities; however, this is at a lower level than pre-injury func-
tioning.
2,14,17,23
Reporting of some adverse symptoms, including
headache, dizziness, and fatigue, generally decreases over time
post-injury.
17,18,23
Conversely, other symptoms, such as irritability
and being bothered by noise, are reported more often at later time
periods.
17
Based on the reporting of changes by relatives, Brooks
and colleagues
16
found increased reporting of behavioral problems
between one and five years after injury.
Also of relevance in the context of longitudinal outcome studies is
the potential impact of age. Although the majority of individuals
sustaining moderate to severe TBI are younger than 30, there is a
proportion who are older. A number of studies have shown that older
age at injury—particularly age older than 50—results in poorer
1
School of Psychology and Psychiatry and
5
School of Medicine, Monash University, Melbourne, Australia.
2
Monash-Epworth Rehabilitation Research Centre, Epworth Healthcare, Melbourne, Australia.
3
National Trauma Research Institute, Melbourne, Australia.
4
Epworth HealthCare, Melbourne, Australia.
JOURNAL OF NEUROTRAUMA 31:64–77 (January 1, 2014)
ª Mary Ann Liebert, Inc.
DOI: 10.1089/neu.2013.2997
64
functional outcomes and greater cognitive impairments.
19,21,22,24,25
However, there has been no clear evidence of accelerated decline
over time post-injury associated with older age at injury.
24,26
Two previously published studies from our research group ex-
amined changes in function at two
4
and five years
19
following TBI.
Even though these cohorts had received rehabilitation, a proportion
continued to report various neurological symptoms, decreased
mobility, relationship and communication issues, need for super-
vision or assistance in activities of daily living (ADLs), and the
presence of cognitive, behavioral, and emotional changes at each of
the follow-up time points.
Although these previous studies have highlighted areas of sig-
nificant functional disability, as well as areas where gradual im-
provement might be expected, there has been limited prospective
examination of functional outcome over periods of more than five
years following injury. Those studies that have examined outcome
longitudinally over long periods of time, such as studies by
Thomsen
22,30
and Tate and colleagues,
21,31
have tended to focus on
severely injured samples. While illuminating, these studies may
present a pattern of outcome that does not necessarily generalize to
less severe injuries—for example, where post-traumatic amnesia
duration is shorter than one month—and which represent the ma-
jority of individuals with TBI. Another small study of 20 individ-
uals with severe TBI by Sbordone and colleagues
5
relied on
relatives to retrospectively rate the status of their injured family
member at two, five and 10 years post-injury, reporting progressive
improvements over time across most dimensions. However, the
accuracy of recollection of the experience and status of an injured
relative over such long periods is likely to be limited. There also
may be a tendency to want to demonstrate that progress has been
made over time. Some other limitations of previous studies include
their focus on only one aspect of functional outcome
14
and inclu-
sion of different numbers of participants completing each follow-
up time point.
2
The aims of the current study were to extend the findings of our
research group’s two previously published studies
4,19
—based on
the reports of those injured—to 10 years post-injury. Using a lon-
gitudinal design, functional outcome was examined across a broad
range of areas in a cohort of the same individuals followed up at
two, five, and 10 years following their injury. Given the extended
time frame of follow-up, which introduced the potential for age-
related changes, comparison was made of outcomes reported by
those older than 50 at the time of injury with those age 50 or
younger.
Methods
Participants
Individuals with complicated mild-to-severe TBI were recruited
from consecutive admissions to a TBI rehabilitation center in the
context of a no-fault accident compensation system. Participants
were recruited between the years 1985 and 2002. They had all
received inpatient rehabilitation, during which they typically re-
ceived 3–5 h daily of physiotherapy, occupational therapy and
speech therapy, neuropsychological assessment, and social work
services. This was generally followed by outpatient or community-
based rehabilitation, with continuing therapy as needed, as well as
support for return to work (with funded work trials) and study (with
funding for integration aides or tutoring support). There also was
funding for home help and attendant care support for as long as
needed. These individuals received therapy services over an aver-
age nine-month period, although there was considerable variability
according to individual needs. They all had been routinely invited
to attend a follow-up clinic at one year and two, three, five, and 10
years post-injury. There were 141 patients who attended follow-up
at two, five and 10 years post-injury. This group was the focus of the
current study.
Sixty-one percent of the sample were men, with a mean age at
time of injury of 34.91 years (standard deviation [SD], 16.07) and
mean education of 11.29 years (SD, 2.43). This group included 28
participants who were older than 50 at time of injury, of whom 16
were 61 years or older with the oldest being 73. Participants had a
median GCS of 5 (interquartile range, 5; range, 3–15) and a mean
post-traumatic amnesia (PTA) duration of 35.75 days (SD, 38.68;
range, 0–182). Classifying injury severity based on duration of PTA
resulted in 2.8% of the sample being classified as mild ( < 24 h),
23.4% as moderate (1–7 days), 29.8% as severe (8–28 days) and
44% as very severe ( > 28 days). When this was compared between
the younger (50 or younger) and older (older than 50) age groups,
the younger group had a mean PTA duration of 39.53 days (SD,
40.63) and the older age group had a mean PTA duration of 20.5
days (SD, 24.7). Injury severity based on Glasgow Coma Scale
(GCS) scores resulted in 10.2% of the sample being classified as
mild, 12.7% as moderate, and 77.1% as severe. Only 1.42% of the
sample was classified as having complicated mild TBI, while no
one was classified as mild on both PTA and GCS. Prior to injury,
46.8% of participants were single/never married, 42.5% were
married or de facto, 6.5% were separated or divorced, and 4.3%
were widowed. At the time of injury 61% of participants were
employed full-time, 5% were employed part-time, 7.1% were un-
employed, 14.9% were not in the labor force, 5.7% were secondary
students, and 6.4% were tertiary students.
The current sample of 141 participants was compared to hospital
patients with TBI who did not attend follow-up at all of the two-,
five-, and 10-year time points (n = 1261). They did not differ sig-
nificantly in terms of gender (v
2
[1, N = 1402] = 5.51; p > 0.05),
years of education (t[1263] = 1.24; p > 0.05), or duration of PTA
(t[1373] = 1.21; p > 0.05). However, the patients who did not attend
follow-up at all these time points were significantly younger in age
(mean, 31.17; SD, 15.31; t[1393] = 2.74; p < 0.01), and had higher
GCS scores (mean, 7.37; SD, 4.16; t[155] =-2.66; p < 0.01).
Materials
Participants completed the Structured Outcome Questionnaire
4
at each of the follow-up assessments. The responses reported in this
paper are based on self-report by the person with TBI.
Structured Outcome Questionnaire
The Structured Outcome Questionnaire addresses domains of
functioning previously shown to undergo change following TBI,
including changes to neurological functioning, mobility, cognition,
behavior, communication, emotional state, independence in per-
sonal, domestic and community activities of daily living, leisure
activities, employment, and relationship status.
The neurological complaints section documents presence of
increased epilepsy, headaches, dizziness, balance difficulties,
physical fatigue, vision, smell, or hearing since the injury. Mobility
was rated on an eight-point scale from 1 (confined to bed) to 8
(previous level). The cognitive, behavioral, communication, and
emotional domains assessed included changes in memory, planning
and problem-solving, concentration, speed of thinking, mental fa-
tigue, initiative, self-centeredness, irritability, impulsivity, socially
inappropriate behavior, difficulty making speech understood, fol-
lowing conversation, and thinking of words, as well as levels of
depression and anxiety. Reponses were rated as change present or
absent relative to pre-injury.
Independence in personal (e.g., feeding, dressing, grooming), light
domestic, heavy domestic, and community (shopping and finan-
cial management) activities of daily living were rated on a six-point
FUNCTIONAL OUTCOME AFTER TRAUMATIC BRAIN INJURY 65
Table 1. Summary of Longitudinal Studies Examining Functional Outcome Following Traumatic Brain Injury
Study No. of subjects Time assessed following TBI Measures Results
Brooks and
colleagues
(1986)
16
Relatives
of 42 participants
with severe TBI
(age range, 16–60 years)
Two: 1 year, 5 years Structured interview of
close other
At both 1 year and 5 years, behavior problems most frequently reported by
relatives
Changes in personality reported by more relatives at 5 years (74%) than at 1 year
(60%). Similar increase over time in threats of violence (from 15% to 54%)
Number of physical, emotional and subjective difficulties similar at 1 year and 5
years; language disturbance, level of dependence and memory problems increased
slightly over time; and disturbed behavior increased greatly over time
Dikmen and
colleagues
(1993)
17
31 participants with moderate-
to-severe TBI (age range,
15–60 years), and 102
friend controls (age
range not given; mean
age, 24 years)
Three: 1 month,
1 year, 2 years
SIP, HISC, FSI, struc-
tured interview
Ambulation, mobility and self-care as measured by the FSI improved from 1 month
to 2 years post-injury
Of those living independently pre-injury, only 9% were living independently at 1
month post-injury, 50% at 1 year and 68% at 2 years (significantly fewer than
controls)
None had returned to work 1 month post-injury, 30% at 1 year and 46% at 2 years
(significantly fewer than controls)
Self earnings declined post-injury, with 70% of participants reported as financially
independent 1 year and 2 years post-injury
While 26% reported dysfunction on the SIP at 1 month post-injury, this dropped to
10% at both 1 year and 2 years post-injury
Percentage reporting symptoms of headache, fatigue, bothered by light, and
difficulty concentrating decreased from 1 month to 1 year and again to 2 years
post-injury. Being bothered by noise and irritability were reported more often from
1 month to 1 year to 2 years post-injury
Dikmen and
colleagues
(2010)
18
732 participants with mild-
to-severe TBI (age range
not given; mean age,
31 years), 120 trauma
controls (age range
not given; mean age,
31 years)
Two: 1 month, 1 year Symptom Checklist The rates of symptom reporting decreased from 74% at 1 month post-injury to 53%
at 1 year for the TBI group
There were between 4–18% of adults with TBI who reported symptoms at 1 year
post-injury but not at 1 month post-injury
Grauwmeijer
and colleagues
(2012)
2
113 participants with
moderate-to-severe
TBI (age range not
given; mean age, 33 years)
Seven: Pre-injury,
3 months, 6 months, 12
months, 18 months, 24
months, 36 months
Employment outcome,
FIM, BI, FAM used as
predictors
Employment rate dropped from 80% pre-injury to 15% at 3 months and then
increased to 55% at 3 years
Olver and
colleagues
(1996)
19
103 participants with
moderate-to-severe
TBI (age range, 11–69y)
Two: 2 years, 5 years SOI Between 2 and 5 years, there was an increase in independence in personal,
domestic and community ADL and the use of transport
There was a higher incidence of cognitive, behavioral and emotional changes
reported at 5 years than at 2 years
32% of those employed at 2 years were not employed at 5 years
Pagulayan and
colleagues
(2006)
3
133 participants
with mild-to-moderate TBI
(age at least 14 years), 111
general
trauma patients, 87 healthy
friend
controls (age range, 15–60
years)
Four: 1 month, 6 months, 12
months, 3–5 years
SIP There was an improvement from 1 month post-injury to 6 months post-injury in the
physical domain, with a smaller improvement observed for the psychosocial
domain
(continued)
66
Table 1. (Continued)
Study No. of subjects Time assessed following TBI Measures Results
Sigurdardottir
and
colleagues
(2009)
20
115 participants with mild-to-
severe
TBI (age range, 16–55
years)
Two: 3 months, 12 months GOSE, FSS There was a significant time effect on the GOSE, with higher scores at 12 months,
compared with at 3 months
37% of the sample were employed at 3 months and this significantly increased to
68% at 12 months
Tate and
colleagues
(2005)
21
68 participants with severe
TBI
(age range at injury, 15–43
years)
Two:
6 years, 23 years
CHART, SPRS-C, semi-
structured interview
Mobility: 85.3% were independent at 6 years post injury, but only 75% were
independent at 23 years post injury
High rates of independence in self-care (81%) were observed at both time-points
Employability: 45.5% were employed at 6 years, while only 33.8% were employed
at 23 years
36.8% had good relationships at 6 years post-injury, with this increasing to 45.6%
at 23 years post-injury
54.4% had good living skills at 6 years post-injury, with this increasing to 61.8% at
23 years post-injury
Thomsen
(1984)
22
40 participants with extremely
severe TBI (age range, 14–
44 years)
Two: 2.5 years, 10–15 years Questionnaire Place of living: Many more participants were living alone at 10–15 years post-
injury (n = 17) than at 2.5 years post-injury (n = 2)
22.5% were married at 2.5 years; 15% were married at 10–15 years
Motor impairment: Motor impairment was initially present in all participants, but
10 had recovered from all symptoms by 2.5 years post-injury. This remained the
same at 10–15 years post-injury
Dependence: 24 participants were dependent at 2.5 years post-injury and this
decreased to 12 participants at 10–15 years post-injury
Communication: 16 participants had aphasia at 2.5 years post-injury. This
decreased to 4 at 10–15 years post-injury. The same number of participants (n = 15)
had dysarthria at both follow-up time points
Employment: 15% were employed full-or part-time at 2.5 years and 12.5% at 10–
15 years; 93% received disablement pension at the 10–15 year time point
Psychosocial sequelae: Major loss of social contact and decline in family
relationships. Decline in reporting of some problems from 2.5 years to 10–15
years: poor memory, changes in personality and emotion, childishness, emotional
lability, disturbed behavior, poor concentration, and slowness. For other problems,
reporting increased at the second follow-up: irritability, restlessness, loss of social
contact, aspontaneity, tiredness, sensitivity distress and lack of interests
Work capacity: 9 participants (22.5%) were either in full-time, part-time, or paid
sheltered work at 2.5 years post-injury, with slightly more participants (n = 12)
working at 10–15 years post-injury (30%)
van der Naalt
and colleagues
(1999)
23
67 participants with mild-to-
moderate TBI (age range,
15–64 years)
Four: 1 month, 3 months, 6
months, 12 months
HISC, RTW The percentage of those reporting dizziness, poor concentration and slowness
decreased with each follow-up time-point (i.e., over time)
The percentage of those reporting alcohol intolerance increased over time
At 12 months post-injury, 73% had returned to work, though 84% still reported
complaints, such as headaches, irritability, forgetfulness, poor concentration, and
fatigue
TBI, traumatic brain injury; SIP, Sickness Impact Profile; HISC, Head Injury Symptom Checklist; FSI, Function Status Index; FIM, Functional Independence Measure; BI, Barthel Index, used to assess independence;
FAM, Functional Assessment Measure; SOI, Structured Outcome Interview; ADL, activities of daily living; GOSE, Glasgow Outcome Scale-Extended; FSS, Fatigue Severity Scale; CHART, Craig Handicap and
Reporting Technique; SPRS-C, Sydney Psychosocial Reintegration Scale–categorical version; RTW, return to work, as measured on a 4-point scale (0 = previous work or study resumed, 1 = previous work or study
resumed, but with lower demands or part time; 2 = previous work or study not resumed, different work or significantly lower level; 3 = not working).
67
scale: 1 = total dependence; 2 = dependence (minimal participation);
3 = dependence (active participation); 4 = minimal assistance only;
5 = supervision only; 6 = independence with or without aids. Driving
ability was rated on a four-point scale; specifically, 0 = no, 1 = not
eligible (e.g., too young, suspended license), 2 = not driving for other
reasons, 3 = able to drive with modifications to car or license con-
ditions, and 4 = able to drive without restrictions. Independence in
use of public transport was recorded on a four point-scale: 0 = not
applicable (e.g., from country), 1 = not able to use, 2 = limited use of
public transport (e.g., assistance required), and 3 = independent use of
public transport. Changes in leisure activities was rated on a four-
point scale, ranging from 1 = return to no previous leisure activities to
4 = return to all previous leisure activities. Participation in leisure
activities after the injury was recorded as yes or no. Current marital
status, difficulties in personal relationships, and getting on with
friends also were recorded. Level of support from close others,
compared with pre-injury, was rated on a three-point scale (more
support, same support, or less support). Employment status was re-
corded as non-vocational (injury too severe or still in rehabilitation),
employed (including full-time and part-time work, work trials and
work experience), student or not in the labor force (e.g., homemaker,
retired, maternity leave).
Scores on the Glasgow Outcome Scale-Extended (GOSE)
32
were recorded at 10 years post-injury. Using a structured ques-
tionnaire, the GOSE assesses outcome on an eight-point scale:
1 = dead; 2 = vegetative; 3 = lower severe disability; 4 = upper se-
vere disability; 5 = lower moderate disability; 6 = upper moderate
disability; 7 = lower good recovery; and 8 = upper good recovery.
Procedure
Ethical approval for this study was obtained from the Epworth
Hospital Human Research Ethics Committee. Individuals with TBI
were invited to participate in the study and provided with a full
written explanation of the study at the time of inpatient rehabili-
tation admission and again at each follow-up. Following consent,
participants with TBI completed the Structured Outcome Ques-
tionnaire with their consulting doctor or a member of the research
team (in person, over the phone, or via mail). Demographic and
injury-related information was obtained from interview with par-
ticipants and, with their permission, from medical records.
Data Analysis
All analyses were conducted with SPSS v20.0 (IBM Corp.,
Armonk, NY). Frequency distributions were computed for all the
variables at each follow-up assessment. However, frequencies for
the GOSE were examined only at 10 years due to incomplete data at
the other time points. Where responses were dichotomous, pro-
portions across time were compared using Cochran’s Q test anal-
ysis. The alpha level was adjusted using Bonferroni correction
according to the number of statistical tests conducted for each
section (e.g., neurological complaints; eight categories; 0.05/
8 = 0.01, etc.). In addition, all of the results were stratified by du-
ration of PTA into mild, moderate, severe, and very severe injury
severity groups. PTA, rather than GCS, was used to stratify indi-
viduals as 77% of the cohort had GCS of 3 to 8, and some studies
have suggested that PTA is more strongly related to longer-term
outcomes
32,33
Results
Neurological complaints
The percentage of participants reporting neurological complaints
is shown in Figure 1. Approximately 7% of the sample developed
epilepsy over the 10-year follow-up period. About a third experi-
enced persistent dizziness, headaches, visual disturbance and re-
duced sense of smell, with a non-significant trend towards a decline
in dizziness and visual disturbance over time. Balance problems
were reported by more than 60% of the sample at two years post-
injury, which was significantly different over the 10-year period,
(40.4% at five years and 55% at 10 years; v
2
= [2] = 9.19; p = 0.01).
Fatigue was the most common complaint, reported by over 70% of
the sample; however, the percentage reporting fatigue tended to
decrease from two to five years and then again from five to 10 years.
Neurological complaints by individuals with mild TBI tended to
decrease over time. Dizziness and problems with smell were not
reported beyond two years post-injury. Headaches and difficulties
with balance were not reported beyond five years post-injury.
However, those with moderate-to-very-severe TBI continued to re-
port neurological complaints up to 10-years following injury. Par-
ticipants age 50 or younger at injury were more likely to report
headaches overall but there were no other significant age-related
differences in symptom reporting. Participants who were older than
50 at the time of injury did not report more neurological complaints
over time than those who were younger than 50.
Mobility
There was little change in the level of mobility for participants
across time post-injury (Fig. 2). More than 55% of participants had
high mobility at two, five, and 10 years post-injury, with no significant
differences between the younger and older age groups. Only a small
proportion (0.8%) had low mobility at two years post-injury, which
increased slightly but not significantly to 6.1% at 10 years post-injury.
Those individuals moving into the low mobility category included five
participants age 50 or younger and three participants older than 50 at
time of injury. Those moving into low mobility also tended to have
severe or very severe TBI. All individuals with mild TBI reported high
mobility throughout the 10 years.
Cognition, behavior, emotion, and communication
A high proportion of the sample reported the presence of
changes in cognition, communication, behavior, and emotional
state. More than 60% of participants reported memory problems
and more than 50% reported difficulty concentrating, slowed
thinking, cognitive fatigue, and word-finding difficulties. There
were no significant differences in the percentage of participants
who reported these changes over time (see Fig. 3). Problems with
planning, initiative, self-centeredness, and impulsivity were re-
ported by 25–45% of the sample. However, there was an increase in
the percentage of participants reporting problems with planning
from two to five years and from five years to 10 years post-injury
(predominantly from the group age 50 or younger at the time of
injury), as well as with inappropriate social behavior, having their
speech understood by others, and following conversation. The in-
crease in reporting largely stemmed from individuals who had se-
vere and very severe TBI. Irritability was a common problem,
reported by more than two thirds of the sample, although the fre-
quency of reported irritability declined somewhat over the 10-year
period. Those who were age 50 or younger were more likely to
report injury-related changes in speed of thinking, cognitive fa-
tigue, self-centeredness, irritability, impulsivity, and inappropriate
social behavior than those older than 50. Those older than 50 did
not report more cognitive changes over time relative to those who
were younger, apart from a trend to report increased cognitive
fatigue. Almost half of the group reported being more anxious
and/or more depressed, compared with before their injury. This
68 PONSFORD ET AL.
proportion declined only slightly over time and did not differ sig-
nificantly according to age.
Daily functioning
The vast majority (more than 95%) were independent in personal
activities. There was an increase in the percentage of participants
who reported independence in light domestic activities over time
post-injury, predominantly in individuals with moderate severity of
injury (see Fig. 4). Approximately 30% of the sample required
some assistance in heavy domestic activities, and approximately
20% required assistance with shopping. Independence in financial
activities increased from 77.8% at two years to 85.1% at five years,
but then decreased to 70.2% at 10 years post-injury. This decline
was evident in both younger and older participants. There were no
overall differences in younger versus older participants in inde-
pendence in personal, domestic, or community ADLs.
With regard to use of transport, more than 50% of participants
reported returning to driving without restrictions at two years post-
injury, with this increasing to approximately 70% at the five year
FIG. 1. Neurological complaints at each year post-injury.
FUNCTIONAL OUTCOME AFTER TRAUMATIC BRAIN INJURY 69
and 10 year post-injury time points. The proportion of participants
older than 50 at the time of injury who returned to driving was lower
(50.7%) than that of the younger age group (69.6%). Approximately
80% of the sample reported independent use of public transport at
each of the follow-up time points. However, there was a small de-
cline in independence in use of public transport and in driving, which
was confined to participants older than 50 at time of injury.
Figure 5 shows that only about half of the sample had returned to
all or most of their previous leisure interests at two years post-
injury, although this percentage increased at five years post-injury.
There was some decrease in participation in leisure activities by 10
years post-injury, evident in both the younger and older age groups
with moderate to very severe injuries. By 10 years post-injury, none
of the participants with mild TBI reported this as a problem.
Relationship issues
Of the participants with TBI who were married or in a de facto
relationship prior to injury, 13.6% were separated, divorced, or
widowed at two years post-injury, 22.4% at five years, and 20.4% at
10 years. Of those who were single prior to injury, 10.9% were
married or in a de facto relationship two years post-injury, 22.2% at
five years, and 29.2% at 10 years post-injury. The marital status of
participants at each time point following TBI is shown in Figure 6.
The proportion of participants who reported difficulty in per-
sonal relationships and getting on with friends increased over time
(see Fig. 7). Between 41% and 47% reported having lost friends or
becoming more socially isolated since the injury. Approximately
40% of participants reported requiring more support than before the
injury, with the proportion not decreasing greatly over time. Those
age 50 or younger were more likely to report requiring more sup-
port than prior to injury than those older than 50. However, as is
evident from Figure 7, the increase in reporting of difficulties in
relationships, as well as with friends, was largely evident in those
with severe and very severe injury severity. Similarly, individuals
with mild TBI ceased to report need for additional support by 10
years post-injury. However, participants with moderate-to-very-
severe TBI continued to reported need for additional support up to
10 years post-injury.
Employment and study
Prior to the injury, 66% of the sample indicated that they had
been employed. Although a minority of participants reported
having returned to their pre-injury employment on a full-time basis
(28.4% at two years, 17.6% at five years, and 11.8% at 10 years),
others were employed in alternative duties with the same or dif-
ferent employer (7.4% at two years, 18.6% at five years, and 11.8%
at 10 years) and an increased proportion were working part-time
(12.8% at two years, 11.1% at five years, and 19.0% at 10 years).
Overall, 40% of participants returned to open employment in some
capacity and this percentage did not change significantly over time.
A significantly lower proportion of participants older than 50 were
employed after injury. The proportion of participants by employ-
ment status is given in Figure 8. Rates of being non-vocational and
unemployed decreased over time, with a concomitant increase in
individuals reporting they were no longer in the labor force. These
individuals generally had moderate to very severe TBI.
Of those studying or employed prior to injury, 53.2% were
studying or employed at two years, 50.1% at five years, and 49.9%
at 10 years. Of those studying or employed at two years (n = 60),
71.67% were studying or employed at five years and 68.33% at 10
years. Fewer participants were studying at five and 10 years, with
only those with very severe injuries studying at the 10 year time
point. A proportion of these appear to have dropped out of the
workforce—either to retire or engage in home-making activities.
These individuals were predominantly those older than 50 at time
of injury. Conversely, of those not studying or employed at two
years (n = 76), 18.42% were studying or employed at five years and
25.0% at 10 years.
GOSE at 10 years
Figure 9 displays overall GOSE scores at 10 years post-injury.
There was a wide range of outcomes. Individuals with severe and
very severe injury largely represent the group of individuals with
vegetative, lower severe disability, or upper severe disability.
Younger participants were overrepresented in the vegetative or lower
severe disability categories, compared with older individuals.
FIG. 2. Mobility at each time point post-injury.
70 PONSFORD ET AL.
FIG. 3. Cognitive, behavioral, emotional, and communication changes that were present for participants at each time point
post-injury.
FUNCTIONAL OUTCOME AFTER TRAUMATIC BRAIN INJURY 71
Conversely, 61.8% of older individuals showed lower or upper good
recovery, compared with 40.2% of younger individuals.
Discussion
This is one of the first reports of longitudinal comparisons of
functional outcome over 10 years in a sample across the spectrum
of moderate-to-very-severe TBI. It has highlighted a number of the
key problems associated with these injuries that persist over many
years.
Problems with fatigue and balance were the most common
neurological symptoms reported by these participants with pre-
dominantly moderate-to-very-severe injuries, although they di-
minished to a small degree over the 10 years. Fewer individuals
with mild TBI tended to reported neurological symptoms over the
10 years following TBI. Balance problems likely contributed to the
FIG. 4. Independence in activities of daily living at each time point post-injury.
FIG. 5. The proportion of participants returning to leisure activities following their TBI (% of sample who responded Yes).
72 PONSFORD ET AL.
high level mobility problems persisting in a quarter of the sample.
Overall, mobility outcomes were good, with only a few from
both younger and older age-groups becoming more dependent
over time. However, those reporting low mobility were individ-
uals with moderate-to-very-severe T BI. Sensory changes, re-
ported by about a third of the sample, were quite persistent over
time.
Changes in a broad range of cognitive functions, particularly in
the domains of memory, attention, and cognitive fatigue, as well as
word-findings difficulties, were far more common than physical
FIG. 6. The proportion of participants in each marital status category.
FIG. 7. Relationship and personal difficulties and level of support required (% of sample who responded Yes).
FUNCTIONAL OUTCOME AFTER TRAUMATIC BRAIN INJURY 73
changes and did not diminish in frequency over time. The increased
reporting of executive and behavioral changes in the domains of
planning, initiative, self-centeredness and impulsivity, and inap-
propriate social behavior, suggested a growth in awareness of ex-
ecutive difficulties and behavioral changes, which individuals with
severe TBI are commonly lacking in the early stages after injury.
35
There also appeared to be a growing awareness of the impact of
these changes on social interactions over the 10 years, with in-
creased reporting of difficulties in personal relationships and
making friends and of social isolation. Irritability was a common
and persistent problem for more than two thirds of the sample.
Almost half the sample still felt more anxious and/or depressed 10
years post-injury. Although a rather crude measure, this frequency
is consistent with rates of anxiety and depression reported over the
long-term on the basis of symptom rating scales or diagnostic in-
terviews in other studies.
36–39
There was no evidence of greater
reporting of cognitive or emotional problems over time in the older
age groups relative to the younger age group.
While consistent with the figures reported by Olver and col-
leagues
19
in an overlapping sample, the rates of symptom reporting
were generally much higher in this study relative to those by
Dikmen and colleagues
17,18
and van der Naalt and colleagues,
23
presumably reflecting the far higher proportion of participants with
moderate-to-severe TBI in this study, which was more similar to
those of Dikmen and colleagues
17
and Brooks and colleagues.
16
All
of these studies have revealed fatigue and memory problems to be
the most common and persistent cognitive symptoms, along with
irritability. What this study has shown is that these symptoms
continue to be prominent over 10 years after injury. A higher
proportion of participants with mild TBI likely also accounted for
higher rates of return to employment in studies by Sigurardottir and
colleagues
39
and van der Naalt and colleagues.
20
The rates of return
to employment are similar to those reported by Grauwmeijer and
colleagues
2
in their three-year follow-up study of a sample of
similar injury severity and age. However, it was positive to see
relatively high levels of employment being maintained up to 10
years post-injury, especially for those aged 50 or younger at injury.
Although high levels of independence were achieved in personal
activities of daily living and significant and continuing improve-
ment in independence in light domestic chores, about a third of the
sample required assistance with heavy domestic activities and 20%
of the sample required some assistance with shopping and financial
FIG. 8. Employment status at each time post-injury.
FIG. 9. Overall Glasgow Outcome Scale-Extended scores at 10 years post-injury.
74 PONSFORD ET AL.
management. A high proportion of patients were driving 10 years
post-injury. The increase in proportion of the sample driving be-
tween two and five years post-injury suggests the need to provide
services for assessment of return to driving over extended periods
of time after injury.
Fewer than half the sample could participate in previous leisure
activities and participation in these activities did not increase over
the 10 years of the study for those with moderate to very severe
injuries. Although more than 50% of those studying or employed
prior to injury returned to employment, there was considerable
movement into and out of employment. This suggests the need for
continuing support and follow-up of those who return to work
following TBI to ensure that if they lose their job they are supported
in finding another one.
Approximately 40% of patients required more support after
injury than prior to injury. Although individuals with mild or
moderate TBI reported less need for support over the 10 years, rates
for those with severe or very severe TBI stayed fairly consistent.
Marital relationships remained remarkably stable, far more so than
in studies by Thomsen
22,30
and Tate and colleagues.
21,31
This most
likely reflected the fact that participants did not have such cata-
strophic injuries, but also possibly the fact that these injured indi-
viduals and their families had access to funded attendant care and
other support services, which reduced the burden on caregiving
spouses. Despite this, there was, however, a growing awareness of
problems in personal relationships and friendships for almost 40%
of the sample, predominantly in those with severe or very severe
injuries.
Given that 28 participants had reached the age of 60 or older by
the 10-year follow-up, of whom 16 had reached age 70, we ex-
amined whether some changes might have been age related. There
were surprisingly few differences between those age 50 or younger
and those older than 50 at time of injury. It needs to be acknowl-
edged that the older subgroup had less severe injuries overall, as
was reflected in the GOSE results at 10 years, and this may have
contributed to the increased reporting of some changes by younger
participants, as was evident, for example, in requiring more support
and the reporting of some cognitive and behavioral changes. It may
also have led to minimization of aged-related differences in the
long-term effects of TBI. However, this comparison did allow for
examination as to whether any decline evident in this cohort was
associated with age per se, rather than the injury. The older group
did show a significantly lower rate of return to employment and a
higher proportion of participants leaving the workforce at five and
10 years post-injury. They were also less likely to return to driving
and became less likely to be driving and independent in the use of
public transport over time.
Overall, it would appear that, consistent with the findings of
Brooks and colleagues,
16
Dikmen and colleagues,
17
and Tate and
colleagues,
21
these injured individuals are developing and main-
taining quite high levels of independence in mobility and activities
of daily living, but there is growing awareness of cognitive and
behavioral changes that impact increasingly on personal and social
relationships and cause growing social isolation over time. There is
significantly reduced participation in leisure activities. There are
also significant ongoing emotional problems. Although these per-
sisting, long-term, problems have been documented in previous
studies, this study has shown that they did not diminish in the same
group of individuals with moderate-to-very-severe injuries over 10
years after injury, in either the younger or older age groups. By and
large, problems that were present at two years post-injury were still
present at 10 years post-injury. The frequency of problems was
generally proportionate to the severity of injury, as measured by
PTA duration. This highlights the usefulness of PTA duration as a
measure of injury severity. Although aggregated findings should
not be used to make specific predictions in individual cases, this is
valuable information for these individuals themselves, their fami-
lies, employers, and those funding and providing health care and
social services.
This finding contrasts with the results reported by Sbordone and
colleagues.
5
In their retrospective study based on reports by sig-
nificant others, there was a gradual improvement in most dimen-
sions of recovery over time. However, as previously stated, these
findings are likely to have been affected by recall bias; the accuracy
of retrospectively recalling an injured relative’s functioning at time
periods up to 10 years previously is questionable. Moreover, the
manner of recruitment of the very small sample was unclear. The
findings are generally consistent with the pattern of findings of Tate
and colleagues,
21
who followed up a very severely injured group
more than 23 years after injury. They did find a far greater decline
in employability, which may have reflected both the greater injury
severity and the older age at follow-up, with some participants
having reached retirement age.
Although the physical and vocational rehabilitation of these
individuals were reasonably successful, it would appear that there is
a need for greater emphasis on providing rehabilitation for cogni-
tive, behavioral, psychological and social issues that limit com-
munity participation in individuals with TBI. Even in this
comprehensive rehabilitation setting, it is still the case that patients
receive many more hours of physical and occupational therapy
focused on independence in and return to activities of daily living
than they do rehabilitation for cognitive, behavioral, and social
problems. Many rehabilitation centers have limited staff with the
expertise to treat these problems. Although the evidence base un-
derpinning interventions is growing, it remains limited. Arguably,
these interventions need to be carried out and certainly their ef-
fectiveness evaluated in the context of the community in ways
discussed by Sloan and Ponsford.
40
This study has a number of limitations, the most significant of
which is that the group followed up represented a small proportion
of the total group of patients treated in the center during the course
of the study. Although not differing from the rest of the group in
gender, education, or duration of PTA, the group was older than the
group who did not attend follow-up at all time points and had lower
GCS scores. This may have meant that the rates of reported prob-
lems were higher than in those who did not return to the follow-up
clinic at all time points and in the total population of people with
TBI. The older subgroup in the present study had less severe in-
juries than the younger subgroup, thus limiting conclusions re-
garding the impact of age on long-term outcome. The study
findings cannot be generalized to individuals with uncomplicated
mild injuries, of whom there were none in the sample. Nor can they
necessarily be generalized to TBI groups who have not received
inpatient rehabilitation. Findings were based on self-report by those
who were injured, who may have been somewhat lacking in
awareness of their limitations. However, it has been suggested that
individuals with TBI are at least as accurate as their close others
in reporting injury-related changes at such long periods after
injury.
35,41
Despite these potential limitations, the study has provided a
comprehensive body of information documenting the long-term
issues faced by a large group of individuals with moderate-to-
severe TBI. This information may be used for education of health
professionals, those injured and their families, and in the planning
FUNCTIONAL OUTCOME AFTER TRAUMATIC BRAIN INJURY 75
and development of services for TBI. In particular, the study has
also highlighted important directions for rehabilitation programs if
they are to improve long-terms outcome in individuals with TBI,
namely the need for a greater focus on the cognitive, behavioral.
psychological, and social problems that impede their community
participation.
Acknowledgments
This project is funded by the Transport Accident Commission,
through the Institute for Safety, Compensation and Recovery Re-
search. We would also like to thank all participants involved in this
project who gave so generously of their time.
Author Disclosure Statement
No competing financial conflicts exist.
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Address correspondence to:
Jennie L. Ponsford, PhD
Department of Psychology
Monash University
Clayton, Victoria, 3800, Australia
E-mail: jennie.ponsford@monash.edu
FUNCTIONAL OUTCOME AFTER TRAUMATIC BRAIN INJURY 77
