1

Introduction

Traumatic brain injury lasts a few seconds while its consequences can linger for a lifetime. This radical rupture will considerably change the trajectory and the life project of patients with TBI and their closed ones. Several personal and environmental factors will influence the patient’s mood and behaviors and eventually lead to excesses or contrarily to withdrawing from others. Epidemiological studies showed that behavioral disorders are one of the most frequent complications at a distance from a severe traumatic brain injury . It has been established that aggressive behaviors were correlated to the existence of a dysexecutive syndrome , anxiety or depression , pain , noisy environment , family dysfunction or poor social functioning . Furthermore, the risk of developing depression remains quite high at a distance from TBI, affecting about 30% of patients . Several environmental factors promoting the onset of depression were also identified: isolation, low socioeconomic status, substance abuse, feuds… .

Furthermore, the severity of behavioral disorders like the patient’s psychological state can explain for a big part the depressive state and burden felt by closed ones and caregivers .

It is essential to take into account these different factors having mutual and reciprocal influences if one wants to attenuate behavioral disorders, depressive reactions as well as their family and society consequences when returning home, especially since a certain number of factors can be changed with adapted support.

To date, most studies concerned hospital care management, which is the first step of the care pathway for TBI patients (see the care pathway established by the French Society of Physical and Rehabilitation Medicine [SOFMER] ). This first hospital-based step is often quite short compared to the duration of behavioral and affective disorders triggered by the traumatic brain injury. In a retrospective study concerning 343 patients with moderate or severe TBI, 94% went home in the first year following the trauma .

Patients and their families are often powerless to cope with behavioral disorders once at home and their main expectations are long-term follow-up and interventions (see ). A few studies reported the effects of a post-hospitalization rehabilitation program in patients with TBI (e.g.: ) but most often, these studies did not specifically focus on the impact of behavioral or affective disorders.

The objective of our study was to determine follow-up measures beyond the hospital stay that could reduce behavioral disorders, depression and constraints for closed ones, based on data form the literature and experts’ consensus.

2

Methods

In order to address the issue of follow-up and prevention of behavioral and affective disorders secondary to TBI, a review of the literature was conducted on the Medline database, in French and English between January 1990 and March 2012 (research conducted by the services of the French High Authority for Health according to the clinical practice recommendations). The research strategy on Medline was based on the combination of the following keywords:

(“Craniocerebral trauma” [Majr]) or “Brain injuries” [Majr] or (Brain injur* or Brain trauma* or Head injur* or Head trauma*) [title] and “General practitioners” [Mesh] or “Social support” [Mesh] or “Family practice” [Mesh] or “General practice” [Mesh] or “Continuity of patient care” [Mesh] or “Rehabilitation/organization and administration” [Mesh] or “Case management” [Mesh] or “Social work” [Mesh] or “Social work” [Mesh] or “Family therapy” [Mesh] or “Ambulatory care facilities” [Mesh] or “Family” [Mesh] or “Patient education as topic” [Mesh] or “Caregivers” [Mesh] or “Social support” [Mesh] or “Case management” [Mesh] or “Rehabilitation, vocational” [Mesh] or Community integration or social reintegration or return to work or community integration [title] NOT “Critical care” [Mesh] or “Child” [Mesh] or “Infant” [Mesh] or “Pediatrics” [Mesh] or “Adolescent” [Mesh] or (Critical care or child* or infan* or paediatr* or pediatr* or adolescent*). An additional study was performed up to 2015 without the use of the services of the French High Authority for Health. Finally, an additional research was conducted on books and articles not referenced in this database.

Only articles describing a support program upon discharge from the hospital or interventions aiming to treat, alleviate or prevent behavioral or affective disorders in patients with TBI after their hospitalization, were considered for this work. Studies with a control group, open studies without a control group, case series and clinical case reports were included in this review of the literature. Results from the articles retained were analyzed according to evidence-based medicine criteria (see Table 1 for the level of evidence and recommendation grades).

Recommendations were formulated by an expert group made of professionals (9 PM&R physicians, 4 psychiatrists, 3 psychologists, 1 primary care physician, 1 physical education professor, 1 social worker, 1 lawyer, 1 director of a medicosocial structure) and 2 persons representing the families of patients with TBI. Afterwards, these recommendations were read and criticized by a reading group also made of professionals (10 PM&R physicians, 7 psychologists, 2 head nurses, 1 psychiatrist, 1 neurologist, 1 primary care physician, 1 physician working in a prison setting, 1 physical education professor, 1 social worker, 1 physical therapist, 1 occupational therapist, 1 lawyer, 1 magistrate, 1 director of a medicosocial structure, 1 person representing the insurance companies and 2 representatives of associations of families of patients with TBI) (see introductory article of Mathé and Luauté in this issue). This good practice recommendation received the label from the French High Authority for Health, meaning that these recommendations were established according to the methodological guidelines and procedures recommended by HAS (see: http://www.has-sante.fr/portail/jcms/c_431294/recommandations-pour-la-pratique-clinique-rpc; the website of the French High Authority for Health (HAS) gives access to documents in English). The protocol lists several criteria (criteria 1, 2, 3, 5, 6, 7, 9, 13, 15) of the PRISMA method .

2

Methods

In order to address the issue of follow-up and prevention of behavioral and affective disorders secondary to TBI, a review of the literature was conducted on the Medline database, in French and English between January 1990 and March 2012 (research conducted by the services of the French High Authority for Health according to the clinical practice recommendations). The research strategy on Medline was based on the combination of the following keywords:

(“Craniocerebral trauma” [Majr]) or “Brain injuries” [Majr] or (Brain injur* or Brain trauma* or Head injur* or Head trauma*) [title] and “General practitioners” [Mesh] or “Social support” [Mesh] or “Family practice” [Mesh] or “General practice” [Mesh] or “Continuity of patient care” [Mesh] or “Rehabilitation/organization and administration” [Mesh] or “Case management” [Mesh] or “Social work” [Mesh] or “Social work” [Mesh] or “Family therapy” [Mesh] or “Ambulatory care facilities” [Mesh] or “Family” [Mesh] or “Patient education as topic” [Mesh] or “Caregivers” [Mesh] or “Social support” [Mesh] or “Case management” [Mesh] or “Rehabilitation, vocational” [Mesh] or Community integration or social reintegration or return to work or community integration [title] NOT “Critical care” [Mesh] or “Child” [Mesh] or “Infant” [Mesh] or “Pediatrics” [Mesh] or “Adolescent” [Mesh] or (Critical care or child* or infan* or paediatr* or pediatr* or adolescent*). An additional study was performed up to 2015 without the use of the services of the French High Authority for Health. Finally, an additional research was conducted on books and articles not referenced in this database.

Only articles describing a support program upon discharge from the hospital or interventions aiming to treat, alleviate or prevent behavioral or affective disorders in patients with TBI after their hospitalization, were considered for this work. Studies with a control group, open studies without a control group, case series and clinical case reports were included in this review of the literature. Results from the articles retained were analyzed according to evidence-based medicine criteria (see Table 1 for the level of evidence and recommendation grades).

Recommendations were formulated by an expert group made of professionals (9 PM&R physicians, 4 psychiatrists, 3 psychologists, 1 primary care physician, 1 physical education professor, 1 social worker, 1 lawyer, 1 director of a medicosocial structure) and 2 persons representing the families of patients with TBI. Afterwards, these recommendations were read and criticized by a reading group also made of professionals (10 PM&R physicians, 7 psychologists, 2 head nurses, 1 psychiatrist, 1 neurologist, 1 primary care physician, 1 physician working in a prison setting, 1 physical education professor, 1 social worker, 1 physical therapist, 1 occupational therapist, 1 lawyer, 1 magistrate, 1 director of a medicosocial structure, 1 person representing the insurance companies and 2 representatives of associations of families of patients with TBI) (see introductory article of Mathé and Luauté in this issue). This good practice recommendation received the label from the French High Authority for Health, meaning that these recommendations were established according to the methodological guidelines and procedures recommended by HAS (see: http://www.has-sante.fr/portail/jcms/c_431294/recommandations-pour-la-pratique-clinique-rpc; the website of the French High Authority for Health (HAS) gives access to documents in English). The protocol lists several criteria (criteria 1, 2, 3, 5, 6, 7, 9, 13, 15) of the PRISMA method .

3

Results

Overall, 980 articles were identified from the selected keywords; 146 abstracts were read and only 6 articles (329 persons included in the different protocols) answered the question asked and the criteria defined for this literature review (see Table 2 and Fig. 1 ).

Table 2

Affective and behavioral disorders after traumatic brain injury: community-based rehabilitation programs.

References	Study description	Level of evidence	Main results and conclusion
Carnevale et al., 2006	RCT 47 brain damaged patients (24 TBI) at home and their caregivers 3 groups: (i) control ( n = 17); (ii) therapeutic education for caregivers ( n = 14) during 4 weeks (1 session per week) and (iii) therapeutic education for caregivers (4 weeks) + individualized behavioral modification program (8 weeks, 1 session per week) ( n = 16) Main outcome measure: change in frequency of targeted behavioral disorders immediately after, and 3 months after the program	2	No significant changes were noted in the frequency of targeted behavioral disorders immediately after the program. Significant decrease of the frequency of disruptive behavioral disorders at 3 months post-termination compared to education only and to the control group
Sander et al., 2009	Feasibility study 15 caregivers of persons with TBI Six web-based videoconferencing sessions for caregivers to manage cognitive and behavioral problems, combining didactic education and interactive problem-solving Outcome: satisfaction and perceived utility questionnaires immediately following training and, on average, 18 months after training	4	Participants’ overall satisfaction and comfort with the training. They perceived that they gained knowledge that was applicable to the everyday problems. At follow-up, all participants reported having used the knowledge gained to help cope with problems. The questionnaire highlighted obstacles related to willingness to seek help among persons in rural areas
Bombardier et al., 2009	Single-blinded, RCT comparing a scheduled telephone intervention to the usual care 171 TBI patients discharged from an inpatient rehabilitation unit The treatment group received up to 7 scheduled telephone sessions over 9 months designed to elicit current concerns, provide information, and facilitate problem-solving in domains relevant to TBI recovery Assessment at one year: Brief Symptom Inventory-Depression subscale (BSI-D), Neurobehavioral Functioning Inventory-Depression subscale, and Mental Health Index-5 (from the Short-Form-36)	2	Control participants developed greater depressive symptom severity from baseline to 1 year than did the treatment group. The treated group reported significantly lower depression symptom severity on outcome measures. For those more depressed at baseline, the treated group demonstrated greater improvement in symptoms than did the controls
Reid-Arndt et al., 2007	This controlled study evaluated the impact of a telephone referral program on service use and functional outcomes 98 TBI patients included during hospitalization or after discharge: 67 were referred to the Early Referral (ER) program and 31 to the control group (this group received services later in their recovery) Telephone assessments a minimum of five times at varying points during follow-up: social/emotional and vocational functioning, as well as satisfaction with program services	3	The ER group had greater functional limitations than controls upon enrolment. Despite this, at follow-up the ER group evidenced significantly better social integration, emotional well-being and vocational functioning than the control group. Individuals in the ER group did not require/receive more programme resources to achieve these better outcomes
Powell et al., 2002	RCT comparing an outreach program and controls: (i) Outreach treatment performed by a multidisciplinary rehabilitation mobile team in the community setting. Two sessions a week for 27.3 weeks in average with provision of written information detailing alternative resources. (ii) Control group: only information about existing sources of potential help. Follow-up at 24.8 months in average after allocation Participants: 94 TBI (between 3 months and 20 years post-injury). Outreach treatment ( n = 48); control group ( n = 46) Assessment: functional independence (Barthel index), anxiety and depression scale	2	Outreach participants were significantly more likely to show gains on functional independency. Differential improvements were not seen for anxiety or depression
Lee et al., 2014	Pilot study investigating the feasibility of a combined exercise and self-affirmation intervention (IntenSati) 21 TBI at least 12 months post-injury from an outpatient rehabilitation department in an urban medical center. IntenSati twice a week over the course of 8 weeks ( n = 12); controls ( n = 9) received usual care Assessment at three time-points throughout the study and at the end of it using neuropsychological and self-report measures to evaluate participants’ cognition and mood	3	The intervention group experienced less depressive symptoms, more positive affect, and had a higher quality of life following the completion of the program. Results associated with cognitive benefits were mixed. The participants tolerated the program well and reported satisfaction with the program

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