The Spectrum of Long-Term Behavioral Disturbances and Provided Care After Traumatic Brain Injury.

Introduction: Behavioral disturbances are found in 50-60% of traumatic brain injury (TBI) survivors with an enormous impact on daily functioning and level of recovery. However, whether typical profiles can be distinguished and how these relate to provided care is unclear. The purpose of this study is to specify the characteristics of behavioral disturbances in patients with various severity of TBI and the impact on functional outcome. Furthermore, the pathways of care after hospital discharge for patients and their care givers are analyzed. Methods: We performed a retrospective cohort study comprising 226 patients with mild TBI (mTBI; n = 107) and moderate-to-severe TBI (mod/sevTBI; n = 119) treated at the outpatient clinic and/or rehabilitation center of our university hospital between 2010 and 2015. Inclusion criteria were: behavioral disturbances as determined with the Differential Outcome Scale and age ≥16 years. Functional outcome was determined by the Glasgow Outcome Scale Extended and return to work (RTW) at six months to one year post-injury. Behavioral impairments and pathway of care were derived from medical files and scored according to predefined criteria. Results: Overall 24% of patients showed serious behavioral disturbances; three times higher in mod/sevTBI (35%) compared to mTBI (13%). mTBI patients mostly showed irritation (82%) and anger (49%), while mod/sevTBI patients mostly showed irritation (65%) and disinhibition (55%). Most (92%) patients returned home, half of the patients did not RTW. Deficits in judgment and decision-making increased risk of no RTW 10-fold. One in ten patients was (temporarily) admitted to a nursing home or psychiatric institution. 13% Of caregivers received support for dealing with impairments of patients and 13% of the mTBI and 17% of the mod/sevTBI patients experienced relational problems. Conclusions: The spectrum of behavioral disturbances differs between TBI severity categories and serious behavioral disturbances are present in a quarter of patients. Only half of the patients resumed work regardless of severity of injury suggesting that particularly the presence and not the severity of long-term behavioral disturbances interferes with RTW. Most patients returned home despite these behavioral disturbances. These findings underline the importance of early identification and appropriate treatment of behavioral disturbances in TBI patients.

Unpacking community mobility: a preliminary study into the embodied experiences of stroke survivors.

PURPOSE: To enrich the discussion on mobility in stroke rehabilitation by translating theoretical repertoires of mobility from the context of geography to rehabilitation. METHOD: Qualitative research methodology was applied, and included in-depth interviews with stroke survivors. RESULTS: This study revealed: (a) social and material differences in clinical, private and public places; (b) ambivalences and shifting tensions in bodily, family and community life; (c) differences in access to resources to be used for mobility. Moving around safely was not a matter of being physically able to walk independently, it also involved dealing with different human actors - such as children, partners and shoppers, and non-human actors - such as doorbells and traffic rules. Stroke survivors had to balance exercise and training, family and working life, and leisure and pleasure, and to renegotiate their mobility in each context. CONCLUSIONS: Our study showed that mobility has many aspects that interact with each other in multiple ways for stroke survivors when they return home and thereafter. The current focus on adherence to mobility and exercise training at home needs to be critically reviewed as it does not capture the multiplicities embodied in real-life settings. Implications for rehabilitation Rehabilitation medicine needs to consider mobility as a way to connect places that are meaningful to individuals rather than as movements from A to B. Clinical outcome measurement tools, such as the 10-meter walk test, are inadequate for evaluating participation in the mobility domain at home or in the community. Mobility issues at the participation domain need to be considered in "how they hang together" rather than distinguished in different disciplinary domains. Rehabilitation practitioners should teach stroke survivors concrete strategies on how to creatively deal with the ambivalences and tensions around mobility in home and community life.

Effectiveness of a Treatment for Impairments in Social Cognition and Emotion Regulation (T-ScEmo) After Traumatic Brain Injury: A Randomized Controlled Trial.

OBJECTIVE: To evaluate the effects of a multifaceted Treatment for Social cognition and Emotion regulation (T-ScEmo) in patients with a traumatic brain injury. PARTICIPANTS: Sixty-one patients with moderate to severe traumatic brain injury randomly assigned to an experimental T-ScEmo intervention or a Cogniplus control condition. INTERVENTIONS: T-ScEmo is a compensatory strategy training for impairments in emotion recognition, theory of mind, and social behavioral skills. Cogniplus is a computerized cognitive function training. Both interventions were given in 16 to 20 weekly 1-hour sessions. MAIN MEASURES: Social cognition tests and questionnaires for social behavior (self- and proxy-rated) administered at baseline, immediately posttreatment, and at 3 to 5 months of follow-up. RESULTS: Compared with the Cogniplus group, the T-ScEmo group improved significantly on facial affect recognition, theory of mind, proxy-rated empathic behavior, societal participation, and treatment goal attainment, which lasted up to 5 months after treatment. At follow-up, the T-ScEmo group also reported higher quality of life and their life partners rated relationship quality to be higher than the Cogniplus group. CONCLUSION: This study shows that impairments in social cognition can be effectively dealt with by using a comprehensive treatment protocol, leading to improvements in everyday life social functioning.

Dystonia-deafness syndrome caused by a ß-actin gene mutation and response to deep brain stimulation.

INTRODUCTION: Dystonia-deafness syndrome is a distinct clinical presentation within the dystonia-spectrum. Although several genetic and acquired causes have been reported, etiology remains unknown in the majority of patients. OBJECTIVES: To describe two patients with dystonia-deafness syndrome due to a beta-actin gene mutation. METHODS: We report on disease course, genetic testing, and management of 2 patients, mother and daughter, presenting with dystonia-deafness syndrome. RESULTS: After exclusion of known dystonia-deafness syndrome causes, whole-exome sequencing revealed a beta-actin gene mutation (p.Arg183Trp) in both patients. Although beta-actin gene mutations are generally associated with developmental Baraitser-Winter syndrome, dystonia-deafness syndrome has been reported once in identical twin brothers. Bilateral GPi-DBS led to a significant decrease of dystonia and regain of independency in our patients. CONCLUSION: The p.Arg183Trp mutation in the beta-actin gene is associated with the clinical presentation of dystonia-deafness syndrome, even with only minimal or no developmental abnormalities of Baraitser-Winter syndrome. GPi-DBS should be considered to ameliorate the invalidating dystonia in these patients. © 2016 International Parkinson and Movement Disorder Society.

Pathways of care the first year after moderate and severe traumatic brain injury-discharge destinations and outpatient follow-up.

PRIMARY OBJECTIVE: To determine the pathways of care within the first year after traumatic brain injury (TBI) and to explore whether provided care is related to residual impairments. RESEARCH DESIGN: Retrospective study of 343 patients with moderate and severe TBI admitted to a Level-1 trauma centre. METHODS AND PROCEDURES: Discharge destinations from hospital to home and frequency of outpatient visits were determined. Outcome was defined 1 year after injury by the Extended Glasgow Outcome Scale and Return to Work. RESULTS: Most (94%) patients had returned home 1-year after injury despite cognitive (76%), behavioural (67%) and physical (55%) impairments. One in four patients was severely disabled and 32% had resumed work on a previous level. Two-thirds of all patients went home as secondary discharge destination and 50% needed inpatient rehabilitation. Almost half of patients needed outpatient care, mostly for behavioural and cognitive impairments. One in 10 patients consulted a psychiatrist, with 55% unfavourable outcome. Of those patients initially discharged to home without follow-up, eventually 10% needed outpatient rehabilitation. CONCLUSIONS: One-year after injury most patients had returned home with residual impairments and frequent medical consultations. This finding warrants further investigation to define appropriate aftercare by various medical specialists aimed at long-term community integration.

Combined clinical and home rehabilitation: case report of an integrated knowledge-to-action study in a Dutch rehabilitation stroke unit.

BACKGROUND AND PURPOSE: There is growing awareness that the poor uptake of evidence in health care is not a knowledge-transfer problem but rather one of knowledge production. This issue calls for re-examination of the evidence produced and assumptions that underpin existing knowledge-to-action (KTA) activities. Accordingly, it has been advocated that KTA studies should treat research knowledge and local practical knowledge with analytical impartiality. The purpose of this case report is to illustrate the complexities in an evidence-informed improvement process of organized stroke care in a local rehabilitation setting. CASE DESCRIPTION: A participatory action approach was used to co-create knowledge and engage local therapists in a 2-way knowledge translation and multidirectional learning process. Evidence regarding rehabilitation stroke units was applied in a straightforward manner, as the setting met the criteria articulated in stroke unit reviews. Evidence on early supported discharge (ESD) could not be directly applied because of differences in target group and implementation environment between the local and reviewed settings. Early supported discharge was tailored to the needs of patients severely affected by stroke admitted to the local rehabilitation stroke unit by combining clinical and home rehabilitation (CCHR). OUTCOMES: Local therapists welcomed CCHR because it helped them make their task-specific training truly context specific. Key barriers to implementation were travel time, logistical problems, partitioning walls between financing streams, and legislative procedures. DISCUSSION: Improving local settings with available evidence is not a straightforward application process but rather a matter of searching, logical reasoning, and creatively working with heterogeneous knowledge sources in partnership with different stakeholders. Multiple organizational levels need to be addressed rather than focusing on therapists as sole site of change.

Place attachment in stroke rehabilitation: a transdisciplinary encounter between cultural geography, environmental psychology and rehabilitation medicine.

PURPOSE: To increase understanding of stroke survivor's needs to successfully re-establish attachment to meaningful places at home and in the community. METHODS: Qualitative research methodology including in-depth interviews with stroke survivors in the clinical, post-discharge and reintegration phases of the Rehabilitation process. RESULTS: Participants longed for recovery and domestic places in the clinical phase, for pre-stroke activities and roles in the post-discharge phase, and for recognition and a sense of belonging in the reintegration phase. The participants' selves had changed, while the spatial and social contexts of their homes had remained the same. Their spatial scope became smaller in both a social and a geographical sense. It was difficult to achieve a feeling of being at home in their bodies and own living environments again. The complexities that needed to be dealt with to engage with the outside world, turned participants unintentionally inwards. In particular, family members of participants with cognitive problems, longed for support and recognition in dealing with the changed personality of their spouses. CONCLUSIONS: Rehabilitation should put greater effort into supporting stroke survivors and their families in home-making and community reintegration processes, and help them to re-own and renegotiate their disabled bodies and changed identities in real life. Implications for Rehabilitation The experienced self-body split, identity confusion and related mourning process should be foregrounded in the post-discharge phase rather than functional recovery, in order to help stroke survivors understand and come to terms with their changed bodies and selves. In the post-discharge and reintegration phases stroke survivors should be coached in rebuilding meaningful relations to their bodies, home and communities again. This home-making process should start at real-life sites where stroke survivors wish to (inter)act.