Community integration after severe traumatic brain injury
Jean-Luc Truellea, Patrick Fayolb, Miche `le Montreuilcand Mathilde Chevignardd,e
Traumatic brain injury (TBI) is a major cause of death
and of disability, particularly in persons under 40 years of
age. There are around 6.2 million Europeans with TBI-
related disability. However, TBI is in many ways a ‘silent
epidemic’, particularly for the so-called ‘chronic phase’.
The long-term physical and, moreover, cognitive/
emotional impairments and the resulting limitations of
daily-life activities affect the person’s self-image, coping
strategies, and community reintegration .
Bridging the gap between medical care/rehabilitation
and community integration means changing semio-
logy from a medical-oriented healthcare perspective
toa more psychological
Community integration has been defined by three main
areas: employment, independent living, and social
The purpose of this study is to review recent advances in
the field of community integration after severe TBI in
adults. A literature search was performed in PubMed
Two major issues emerged: diagnosis, evaluation, out-
come measures; and targeted and holistic programs
addressing community integration.
Assessment of community integration and
quality of life: validated outcome measures
and predictive factors
Malec [2??] identified methodological and ethical issues
in TBI clinical research. The goal of evidence-based
medicine (EBM) is to develop a scientific basis for
choosing interventions that will benefit individuals with
defined characteristics. The randomized controlled trial
(RCT) is the gold standard for EBM methodology. Inter-
ventions in TBI rehabilitation may be appropriately
studied within a social model of disability. Ethical
practice requires not only scientific evidence for an
intervention, but also best practices recommended by
professional traditions and consensus, and the indivi-
dual’s known needs and evolving situation [3,4].
The integrated biopsychosocial approach represents a
significant challenge for the evaluation and development
aDepartment of Neurological Rehabilitation, Raymond
Poincare ´ University Hospital, Garches,bService de
psychore ´habilitation Centre hospitalier Esquirol, rue du
Dr Marcland, Limoges,cLaboratoire de
psychopathologie et de neuropsychologie, Universite ´
Paris 8, rue de la Liberte ´, Saint-Denis Cedex,
dRehabilitation Department for Children with Acquired
Brain Injury, Ho ˆpital National de Saint-Maurice, rue du
Val d’Osne, Saint-Maurice andeUniversite ´ Pierre et
Marie Curie, Paris 10, France
Correspondence to Professor Jean-Luc Truelle, MD,
Department of Neurological Rehabilitation, Raymond
Poincare ´ University Hospital, 92380 Garches, France
Tel: +33 1 42 08 67 88; Mobile: þ33 6 22 84 77 65;
fax: +33 1 47 10 70 73;
Current Opinion in Neurology 2010, 23:688–694
Purpose of review
Despite being the main cause of death and disability in young adults, traumatic brain
injury (TBI) is a rather neglected epidemic. Community integration of persons with TBI
was, until recently, insufficiently informed by clinical research.
To bridge the gap between rehabilitation and community re-entry, the first task is to
assess theperson, using TBI-specific outcome measures. The second task is to provide
designed studies. There are very few such studies. However, there are some effective
comprehensive programs and others which are specifically targeted dealing mainly with
return to work, behavior, and family issues. The complex psychological and
environmental components of the disability require individualized and often long-term
For persons with severe TBI trying to achieve the best possible community integration a
new semiology is required, not just limited to medical care, but also involving social and
psychological care that is tailored to the needs of each individual and family, living within
his/her environment. Currently, only a minority benefit from well validated programs.
community integration, health-related quality of life, long-term outcome, rehabilitation
programs, traumatic brain injury
Curr Opin Neurol 23:688–694
? 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins
1350-7540 ? 2010 Wolters Kluwer Health | Lippincott Williams & Wilkins DOI:10.1097/WCO.0b013e3283404258
of TBI re-entry programs. Their assessment needs vali-
dated scales which are specific to the chronic phase, and
commonly used in TBI. Examples are the Community
Integration Questionnaire (CIQ) , the Mayo-Portland
Adaptability Inventory (MPAI-4) , the Glasgow Out-
come Scale Extended (GOSE) , and the European
Brain Injury Society (EBIS) document . In addition,
the International Classification of Functioning, Disabil-
ity, and Health (ICF)  offers a taxonomic tool for
conceptualizing and codifying symptoms and barriers
to community participation, and allocating resources.
Increasingly, outcome assessment incorporates the sub-
jective opinion of the person with TBI and of his/her
family. Self-awareness may be assessed by the Patient
Competency Rating Scale (PCRS) [10??], mood and
behavior by the Hospital Anxiety and Depression Scale
(HADS) . The ultimate goal of community integ-
ration is health-related quality of life (HRQOL), and the
unique TBI-specific HRQOL scale, QOLIBRI, has now
been validated in six languages [12?].
programs aimed at community reintegration is the accred-
itation process of The Commission on Accreditation of
Rehabilitation Facilities (CARF). CARF is a nonprofit
American/Canadianorganization which has assessed more
than 500 programs in North America and in Europe .
Predictive factors of community integration
Older age at injury, years after injury [14?,15??,16??],
dynamic assessment of learning ability , coma length,
Barthel Index score, hospital discharge destination, and
preinjury community integration [18?] are usually
reported as the major determinants of postinjury
Prigatano , psychosocial variables play a crucial role,
namely, motivation (a desire for, and personal engage-
tance of the handicapping consequences of TBI; suffi-
cient emotional stabilization; and social and family
environment, particularly a supportive partner and ident-
ified and committed professionals.
The five best predictors or HRQOL (measured by
QOLIBRI) in the community integration period are
depression, amount of help needed, health complaints,
anxiety, and GOSE score [12?].
Community integration targeted programs
Although the major part of motor and cognitive recovery
takes place during the first year, persons with severe TBI
can improve after injury for many years [21?].
Targeted programs aiming at improving various physical,
cognitive and behavioural impairments may increase
Physical therapy interventions
Physical disability, in severe TBI, can be a major obstacle
here by coordinating other health professionals. He/she is
confronted with a range of problems, such as epilepsy,
oro-pharyngeal and bladder/bowel dysfunction, move-
ment and balance disorders, spasticity, orthopedic issues,
pain, and frequent comorbidities in those vulnerable
patients. Recovering mobility is a main challenge. It often
requires long-term rehabilitative maintenance, and may
involve a wheelchair, and assistive devices, for facilitating
independent functioning in the community .
Various specific neuropsychological rehabilitation pro-
grams, focused on divided attention [23?], metacognitive
skills training  or self-awareness  can improve the
targeted skill, but with little transfer to nontrained skills
or independence in everyday life. This is a recurring
problem in neuropsychological rehabilitation in the
chronic phase [26??].
Wilson et al. [26??] demonstrated the efficiency of
electronic devices to compensate memory deficits. For
Culley and Evans , mobile phone and text messages
use improved memorization of rehabilitation goals. Infor-
mation provision on TBI programs is increasingly web-
Behavioral and emotional dysfunction, the major
predictor of low community integration and poor
Two literature reviews [29?,30??] reported very few stu-
dies meeting level I requirements. Cognitive/behavior
Community integration post-TBI in adults Truelle et al.
? Use validated and TBI-specific measures of com-
munity integration and HRQOL.
? When elaborating program studies, participant
characteristics and program content have to be
? Promote best practice in research, including RCT,
single-case experimental design, and consensus
? Long-term follow-up and quality assurance are
based on individual needs, hopes and life situation.
? Promote community-based, holistic and multidisci-
plinary programs, with continuity of care and TBI-
therapy and comprehensive holistic re-entry programs
improve behavioral problems. Serotoninergic antidepress-
ants are the best option for depression. Methylphenidate
[31?] and rivastigmine  improve information proces-
increased after TBI [33?].
Traumatic brain injury limitations on communication,
insight, and self-awareness are an obstacle to insight-
based psychotherapies. Cognitive/behavior therapy and
family therapy are increasingly used. Therapy may
address existential issues such as mourning the loss of
the preinjury hopes and aspirations [29?,30??].
Alcohol and drug addictions are frequent and have a
deleterious effect in TBI. Surprisingly, many physicians
fail toscreenforsubstanceabuse.Furthermore, Westetal.
[34?] showed that 40% of those who diagnosed substance
Ponsford et al. [35?] demonstrated the positive effect of
motivational interviewing, together with an information
booklet on reducing alcohol consumption.
Return to work
Return to work (RTW) is one of the main challenges
following severe TBI [12?,36,37?,38??]. The most signifi-
cant predictors of a successful RTW are better marital
and pretraumatic work status, higher education level,
socio-economic status, and current income, less severe
injury, shorter hospitalization length, being a Caucasian,
and HRQOL [12?,36,37?].
Fadyl and McPherson [38??] identified three approaches
to vocational rehabilitation: work skills rehabilitation,
guided work trials and assisted placement with tran-
sitional job support; individual placement model of
supported employment with on-the-job coaching and
unlimited intervention time and extent; and a case man-
agement model, with early intervention and continuity of
care, and coordination with other rehabilitation services.
The third approach was the most effective, and Fadyl
et al. noted the importance of the therapeutic alliance
with a skilled practitioner.
Wrona [39?] described the vocational rehabilitation pro-
cess in the state of Washington. Forty-four per cent of
persons with severe TBI received vocational rehabilita-
tion, including 65% who returned to work or were con-
sidered as employable. Vocational rehabilitation was pro-
vided in four phases: early intervention involving
employee, employer, physician and vocational counselor;
assessment of ability to work; retraining plan; and plan
implementation. RTW may be full or part-time, shel-
teredwork,or volunteer activity. Ouellet etal. [40?] noted
that the volunteer group included the most severely
injured, and those with a longer delay after injury. One
key to successful RTW is the belief on the part of service
providers that employability is related to the right type,
level, and intensity of support when efforts are made to
help people locate workplaces inwhich their skills will be
valued and their limitations accommodated [41??].
Return to driving
Hemianopia, epilepsy, inattention, aggression, and sub-
stance abuse may all lead to inability to drive, thus
impeding employability, social relationships, indepen-
dence, and self-image. Severely injured patients should
have a driving assessment, including neuropsychological
examination, a simulator test, and an on-road driving test
Sport, leisure, culture, and spirituality
Sportscanbeamajor promoter ofcommunityintegration,
especially for those without severe physical damage. For
the most severely injured, other nonsporting leisure
activities may improve familial and social reintegration.
The choice of activity is typically based on previous life
experience, and the wishes and abilities of the person
with TBI . Better mental health is known to be
associated with membership of a religious group. Positive
spiritual experiences and willingness to forgive are
related to better physical health .
Traumatic brain injury veterans often sustain blast injury
with sensory impairment, pain, reduced motivation,
emotional dysfunction, substance abuse, and impaired
family dynamics [45?]. The Assisted Living Pilot Project
at the Defense and Veterans Brain Injury Center-Johns-
town combines traditional services with telemedicine-
teleconferencing and embedded research on outcomes
and interventions [46?].
Community integration holistic programs
A systematic review, from 1990 to 2008 (Geurtsen et al.
[47??]), of comprehensive re-entry programs after severe
acquired brain injury (ABI) yielded two RCTs, five con-
trolled comparative studies, and six uncontrolled longi-
tudinal cohort studies. Those studies showed a reduction
in psychosocial problems, better community integration
and work participation, more so for day-treatment pro-
grams than for residential programs and for neurobeha-
vioural interventions. Overall, there were methodological
intervention characteristics. The author highlighted the
importance of an integrated multidisciplinary team, and
found that community-based therapy is as effective as
residential programs. Some programs use the goal attain-
ment approach, which provides subjective satisfaction,
Trauma and rehabilitation
Altman et al. [49??] carried out a retrospective analysis
of a community-based postacute brain injury rehabi-
litation on 489 persons with TBI, compared to 114
who were discharged early, prior to program completion.
Significant differences in favor of the former were found
on MPAI-4 (P<0.0001). Gracey et al.  propose a
model of the change process in rehabilitation called the
Y-shape model focused on level of participation but
also on the personal meaning of this to the person
Case management was initially developed in the USA to
facilitate cost-effective rehabilitation. In this approach,
one person (the case manager) is given responsibility to
formulate a plan of intervention, identify the many
services likely to be needed by the brain injured person,
and then help the patient navigate through the maze of
services. Studies by Cope  demonstrated that effi-
cient case management led to shorter inpatient rehabi-
litation stays, and improved rehabilitation outcomes.
Case management is developing in Europe. The British
Association of Brain Injury Case Managers (BABICM)
has now developed a competency framework to assure
quality, and help the professional development of the
case manager [52?].
Impact on family, caregiver stress and
The family has two characteristics: it is caregiver and it
Traumatic brain injury affects the whole family. Several
studies indicate persisting and significant levels of
depression, anxiety, and somatic symptoms. Higher care-
giver distress was associated with caring for survivors who
had worse functional status, received more supervision,
and used alcohol excessively [53?].
Traumatic brain injury family associations are an import-
ant part of the service network, and provide peer groups,
mutual help, and counseling. Regional associations are
often grouped in a national union, which may accrue
political power, and convince public authorities to pay
attention to this ‘silent epidemic’, and to give financial
support for integration programs.
Sex and partnership
Complaints of sexual dysfunction are related to isolation,
emotional and behavioral change, and impaired com-
munication, rather than physical/organic difficulties.
Nevertheless, unsatisfied sexual desire, coupled with
impulsivity, reduced empathy, and difficulty in under-
standing social situations can explain the (relatively
infrequent) sexual assault or aggression. The partner of
the injured person, often a woman, may sustain a heavy
responsibilities. There is a high risk of divorce with a
divorce rate of 58% five years following injury. Managing
sexual issues, especially in residential facilities, is very
challenging for staff, and requires patient-centred care,
with a respect for emotional needs, while balancing an
individual’s rights and limitation of liberty necessitated
by the risk of violence. For female patients pregnancy is
a difficult challenge, requiring reliable contraception
and/or mature decision founded on the ability of the
couple to bring up children [52?,54].
Professional training and concerns
A well trained, experienced, open-minded, and motiv-
ated professional is a key element in a TBI re-entry
program. US and European master classes and university
courses with practical exercises and in-facility courses are
Whatever the compensation system, the physician, the
psychologist, and others, for example, the occupational
therapist, play a major role. TBI requires a thorough
assessment of cognitive/behavior sequelae, family needs,
and functional consequences such as loss of employment.
TBI care, and a solicitor trained in injury compensation
The patient and the life project
Over time, the impact of the initial severity and of the
biomedical aspects decreases, whereas the impact of the
psychological and social/environmental aspects increases.
TBI is particularly common as a result of road traffic
accidents in adolescents and young adults and comes at a
issues regarding independence, work and relationships.
Asking patients for their subjective opinion is crucial in
prioritizing therapeutic goals, taking into account their
personal needs, values and hopes. It also facilitates the
therapeutic alliance, thus helping the participant to build
a new life, in his/her own cultural, familial, social and
environmental context [12?,55?,56?,57].
Continuum of care
One critical issue is transition between early rehabilita-
tion and community integration. At that transition, TBI
persons are still often left alone with their families,
without significant clinical support, leading often to psy-
chosocial deterioration. To address this issue, a transi-
tional program was created, in France, with four aims:
evaluation, retraining, social/vocational orientation, and
follow-up (UEROS). Each of the 32 UEROS comprises a
Community integration post-TBI in adults Truelle et al.
multidisciplinary team providing support for 6 months to
acquired brain injuries, mainly TBI (67%), and long-term
assessment and follow-up. Out of 395 ABI patients, 68%
were moderately or severely disabled at admission. Two
years after discharge, 33% returned to their own accom-
modation and 49% to some kind of work. Apart from the
mandatory continuity of care all the way through, there is
a need for TBI-specific networks, if possible in the same
geographic area [55?],
Do the services meet the needs?
Lefebvre et al.  interviewed persons with TBI,
families and professionals and found that services were
considered to be inadequate, as follows: information,
communication planning, resources coordination and
coherent support, feedback in progress and issues, and
access to medical records; financial protection, work
adaptation and how to access care in psychological crises;
recognition of the need for family and caregiver training
and support, peer groups and associations; and continuity
of care, awareness and access to TBI-specific programs.
For persons with severe TBI trying to achieve the best
possible community integration a new semiology is
required, not just limited to medical care, but also invol-
ving social and psychological care that is tailored to the
needs of each individual and family living within his/her
environment [18?]. Community-based holistic, interdis-
ciplinary, and TBI-specific programs are needed, and
outcomes must be rigorously assessed by effective
measures. There are currently too few services to meet
the needs of all those whohave suffered a TBI, especially
in the long term [53?].
We would like to thank Dr Neil Brooks for our common work on TBI
projects on behalf of the European Brain Injury Society, and for
including his helpful advice on this paper, Professor Klaus von Wild
who induced me to focus our main common investment on community
integration of persons with TBI, Professor Philippe Azouvi for our fruitful
collaboration about the persons with TBI that I take care of in his
department, Christophe Coupe ´ who gathered the numerous papers,
Michel Onillon (ADEF-re ´sidences) for his contribution to community
integration of adults with TBI.
The authors report neither conflict of interest, nor any funding or
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Despite the heterogeneity of the population served which explains the difficulty of
assessing its effectiveness, case management is developing and integrates, under
the leadership of the case manager, all the interventions needed by one person
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This work presents the French experience of community integration after TBI and
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programs, and family involvement.
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head injury, namely the degree of rurality of a client’s home town and the funding
model to which they are allocated.
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Trauma and rehabilitation