RECAPDOC - a questionnaire for the documentation of rehabilitation care utilization in individuals with disorders of consciousness in long-term care in Germany: development and pretesting.

BACKGROUND: A multitude of different rehabilitation interventions and other specific health care services are offered for individuals with disorders of consciousness in long-term care settings. To investigate the association of those services and patient-relevant outcomes, a specific instrument to document the utilization of those services is needed. The purpose of this study was to develop such a questionnaire administered to caregivers in epidemiological studies or patient registries in Germany. METHODS: The development process of the RECAPDOC questionnaire was carried out in three steps. Step 1 consisted of a systematic literature review and an online-based expert survey to define the general content. Step 2 was an expert interview to evaluate the preliminary content of the questionnaire. Step 3 was a pretest including cognitive interviews with caregivers. After each step, the results were combined into a new version of the questionnaire. RESULTS: The first version of the questionnaire included items on utilization of medical care, medical aids, nursing and therapeutic care. The results of the expert interview led to the integration of five new items and the modification of six other items. The pretest led to some minor modifications of the questionnaire since it was rated as feasible and acceptable. The final questionnaire consisted of 29 items covering the domains "living situation", "social insurance status", "utilisation of home health care", "domestic services", "outpatient health care", "specific diagnostic measures", "adaptive technologies", "medical aids" and "utilization of therapies". Also the experience of family support and multidisciplinary collaboration of health professionals is covered. CONCLUSIONS: The developed questionnaire is a first step to make the situation of patients with disorders of consciousness in the long-term care setting accessible for evaluation in epidemiological studies and in the context of patient registries. However, further reliability and validity studies are needed.

Prognostic factors in childhood-acquired brain injury.

BACKGROUND: A long-term follow-up study comparing children after anoxic brain injury (AnBI) with those after traumatic brain injury (TBI) was conducted, and prognostic factors were mapped. METHODS: A prospective historical study following long-term functional outcome after childhood brain injury was conducted in two phases. The first phase included patients suffering from moderate-severe TBI. The second phase assessed children after AnBI, and the results were compared. Functional outcome was recorded and factors influencing prognosis were outlined. RESULTS: On admission vegetative state (VS) was twice as prevalent in the AnBI subgroup. Approximately 90% of children with TBI and 60% of patients with AnBI gained independency in activities of daily living (ADL) and mobility. Long-term positive outcome, i.e., return to school and open-market employment, were higher in patients with TBI when compared with AnBI (61% and 48.1%, respectively). Significant outcome-predicting factors were VS at admission to rehabilitation, length of loss of consciousness (LOC) up to 11 days and functional independence measure (FIM) score at admission and discharge. Aetiology was not found to be a predicting factor. CONCLUSIONS: Duration of unconsciousness is the main long-term negative prognostic outcome factor. Anoxic brain damage, associated with longer periods of unconsciousness also heralds a less favourable outcome.

[An existential-phenomenological approach to consciousness].

The human beings are characterized as subjects. Their essence is understood as Person. A treatment which does not consider the subjective and the Person would not correspond their essence. For a feeling and autonomous being, consciousness plays a role but cannot fully correspond the being a person. This has a therapeutic impact on the treatment of unconscious patients and gives the treatment a specific access. Some instructions for the therapeutic application of the phenomenological-existential concept and the phenomenological attitude towards unconscious or brain traumatized patients are given. The role of consciousness for being human is briefly reflected from an existential perspective.

[Brain injury: existential view to the restoration of the patient's contact with the self and the world].

We present conceptual changes in psychological rehabilitation after severe brain injury. Traditional clinical approach reduces the person's inner life to level of consciousness, considers psychological processes only from the deficit point of view. We consider the experience of coming out of coma (non-existence) from the point of fundamental components of existence, i.e. anchoring with the world, with life, with self, with the future (Langle, 2003). In aspect of experience these components form the matrix of Patient-World and Patient-Self recovery phases. While working with BI patients, we have defined following phases: 0-phase: experiencing existence, the feeling "I exist here". The main target of psychotherapy is consolidation and reinforcement of the feeling of existence through the feeling of one's body boundaries (and extension), and finding resources for surviving. 1-phase: "be-able-to-exist-in-the world". The patient comes across reality of external world. We mean first of all the perception of the factual side of the world. 2-phase: loving life. The work is concentrated on the recovery of patient's ability to address himself and others so as to be able to experience emotions and live through his own wishes. 3-phase: restoration of patient's self-image and substantiation of own value. It means self-perception and selfrespect despite all the losses and deficits because of trauma. 4-phase: finding the sense. It is necessary to help the patient to make the existential change to avoid dependent position, don't consider himself as the victim of circumstances. This conception is used on different stages of recovery starting from severe disordered consciousness to socialization stage.

Premorbid personality characteristics and attachment style moderate the effect of injury severity on occupational outcome in traumatic brain injury: another aspect of reserve.

The concept of "reserve" has been proposed to account for the mismatch between brain pathology and its clinical expression. Prior efforts to characterize this concept focused mostly on brain or cognitive reserve measures. The present study was a preliminary attempt to evaluate premorbid personality and emotional aspects as potential moderators in moderate-to-severe traumatic brain injury. Using structural equation modeling and multiple regression analyses, we found that premorbid personality characteristics provided the most robust moderator of injury severity on occupational outcome. Findings offer preliminary support for premorbid personality features as another relevant reserve construct in predicting outcome in this population.

Rehabilitation outcome of unconscious traumatic brain injury patients.

Outcome prediction of traumatic brain injury (TBI) patients with severe disorders of consciousness (DOC) at the end of their time in an intensive care setting is important for clinical decision making and counseling of relatives, and constitutes a major challenge. Even the question of what constitutes an improved outcome is controversially discussed. We have conducted a retrospective cohort study for the rehabilitation dynamics and outcome of TBI patients with DOC. Out of 188 patients, 37.2% emerged from a minimally conscious state (MCS) and 16.5% achieved at least partial functional independence after a mean observation period of 107 days (range 1-399 days). This reflects that emergence from MCS is much easier to achieve than functional independence. Logistic regression analysis identified age and level of consciousness upon admission to neurorehabilitation as independent prognostic factors for both outcomes. The group who reached at least partial functional independence started to improve significantly more than the corresponding outcome group by post-injury week 7, and the average time to reach this functional status was 18 weeks. In contrast, the group who emerged from MCS started to improve after 6 weeks. The longest delay between brain injury and the beginning of functional improvement (measured by biweekly Functional Independence Measure [FIM] scores) still compatible with reaching at least partial functional independence was 18 weeks. In conclusion, despite a strong negative selection, a substantial proportion of severe TBI patients with DOC achieve functional improvements or at least emerge from MCS within the inpatient rehabilitation phase. In order to avoid self-fulfilling prophecies in decision making, it is important to be aware of the fact that the beginning of clinical improvement may take several months after brain injury. In this study, separation of both of the functional outcome groups started by 7 weeks post-injury.

Which on-field signs/symptoms predict protracted recovery from sport-related concussion among high school football players?

BACKGROUND: There has been increasing attention and understanding of sport-related concussions. Recent studies show that neurocognitive testing and symptom clusters may predict protracted recovery in concussed athletes. On-field signs and symptoms have not been examined empirically as possible predictors of protracted recovery. PURPOSE: This study was undertaken to determine which on-field signs and symptoms were predictive of a protracted (≥21 days) versus rapid (≤7 days) recovery after a sports-related concussion. On-field signs and symptoms included confusion, loss of consciousness, posttraumatic amnesia, retrograde amnesia, imbalance, dizziness, visual problems, personality changes, fatigue, sensitivity to light/noise, numbness, and vomiting. STUDY DESIGN: Cohort study (prognosis); Level of evidence, 2. METHODS: The sample included 107 male high school football athletes who completed computerized neurocognitive testing within an average 2.4 days after injury, and who were followed until returned to play as determined by neuropsychologists using international clinical concussion management guidelines. Athletes were then grouped into rapid (≤7 days, n = 62) or protracted (≥21 days, n = 36) recovery time groups. The presence of on-field signs and symptoms was determined at the time of injury by trained sports medicine professionals (i.e., ATC [certified athletic trainer], team physician). A series of odds ratios with χ(2) analyses and subsequent logistic regression were used to determine which on-field signs and symptoms were associated with an increased risk for a protracted recovery. RESULTS: Dizziness at the time of injury was associated with a 6.34 odds ratio (95% confidence interval = 1.34-29.91, χ(2) = 5.44, P = .02) of a protracted recovery from concussion. Surprisingly, the remaining on-field signs and symptoms were not associated with an increased risk of protracted recovery in the current study. CONCLUSION: Assessment of on-field dizziness may help identify high school athletes at risk for a protracted recovery. Such information will improve prognostic information and allow clinicians to manage and treat concussion more effectively in these at-risk athletes.

Diffusion weighted imaging distinguishes the vegetative state from the minimally conscious state.

The vegetative (VS) and minimally conscious (MCS) states are currently distinguished on the basis of exhibited behaviour rather than underlying pathology. Although previous histopathological studies have documented different degrees of diffuse axonal injury as well as damage to the thalami and brainstem regions in VS and MCS, these differences have not been assessed in vivo, and therefore, do not provide a measurable pathological marker to aid clinical diagnosis. Currently, the diagnostic decision-making process is highly subjective and prone to error. Indeed, previous work has suggested that up to 43% of patients in this group may be misdiagnosed. We used diffusion tensor imaging (DTI) to study the neuropathology of 25 vegetative and minimally conscious patients in vivo and to identify measures that could potentially distinguish the patients in these two groups. Mean diffusivity (MD) maps of the subcortical white matter, brainstem and thalami were generated. The MCS and VS patients differed significantly in subcortical white matter and thalamic regions, but appeared not to differ in the brainstem. Moreover, the DTI results predicted scores on the Coma Recovery Scale (p<0.001) and successfully classified the patients in to their appropriate diagnostic categories with an accuracy of 95%. The results suggest that this method may provide an objective and highly accurate method for classifying these challenging patient populations and may therefore complement the behavioural assessment to inform the diagnostic decision making process.

A prospective study of loss of consciousness in epilepsy using virtual reality driving simulation and other video games.

Patients with epilepsy are at risk of traffic accidents when they have seizures while driving. However, driving is an essential part of normal daily life in many communities, and depriving patients of driving privileges can have profound consequences for their economic and social well-being. In the current study, we collected ictal performance data from a driving simulator and two other video games in patients undergoing continuous video/EEG monitoring. We captured 22 seizures in 13 patients and found that driving impairment during seizures differed in terms of both magnitude and character, depending on the seizure type. Our study documents the feasibility of a prospective study of driving and other behaviors during seizures through the use of computer-based tasks. This methodology may be applied to further describe differential driving impairment in specific types of seizures and to gain data on anatomical networks disrupted in seizures that impair consciousness and driving safety.

Sobre la trama inconsciente de la ligazón madre-hija / On the unconscious plot of the mother-daughter bonding

Se trata de dilucidar el nexo privilegiado de la ligazón madre-hija. El recorte elegido ha sido la interrogación freudiana acerca de este vínculo, teniendo en cuenta que en la teoría freudiana ya constituida, con sus eventuales contradicciones, se encuentran las interrogaciones actuales sobre el tema. Esto produce una serie de puntos de anclaje a pesar de la impregnación fálica de la lógica freudiana, y aparece como una paradoja entre la triangulación edípica y los obstáculos a la teoría que el propio Freud observa en la clínica con mujeres. Freud deja la respuesta a las psicoanalistas, a su específica competencia de mujeres. Aquel valioso mandato fue recibido por ellas de diferentes maneras. La primera que siguió la dirección señalada por Freud fue Ruth Mack Brunswick. Tanto Helene Deutsch como Karen Horney, por su parte, parecieron ignorar o no integrar la fase de la sexualidad preedípica con las especificidades de la relación dual que preceden al reconocimiento del padre. Melanie Klein, en su aportación teórica y clínica, añade a la indagación sobre el vínculo preedípico madre-hija unas peculiares y sustanciosas ideas que abren otros horizontes. En este trabajo se presenta una modalidad aparecida en el proceso analítico de pacientes mujeres donde el soporte temático es el vínculo madre-hija para poder llegar a conclusiones guiadas por los textos freudianos con la aportación de las autoras mencionadas (AU)

The object is to explain the privileged connection between mother and daughter. The chosen fragment was a Freudian interrogation of this bonding, keeping in mind that within the currently constituted Freudian theory, with keeping in mind that within the dcurrently constituted Freudian theory, with its occasional contradictions, recent investigations on the subject are found. This produces a series of anchor points in spite of the phallic presence in Freudian logic, and appears as a paradox between the Oedipus triangulation and the obstacles to the theory that Freud himself observes among women in the clinic. Freud leaves the answer to the women psycoanalysts, to their specific knowledge of women. That valuable mandate was received by them in different ways. The first that followed in the direction indicated by Freud was Ruth Mack Brunswick. As for Helene Deutsch and Karen Horney, they appeared to ignore or not integrate the pre-Oedipus sexuality phase with the specific details of the dual relation that precedes the recognition of the father. Melanie Klein, in her theoretical and clinical contribution, adds to the investigation some peculiar and rich ideas on the pre-Oedipus mother-daughter bonding that open up further horizons. Presented in this work is a modality that appeared in the analytical process of female patients where the subject support is the mother-daughter bond, to arrive at conclusions guided by different Freudian texts with the contribution of the mentioned authors (AU)

Entre el recuerdo y el destino: la repetición / Between memory and destiny: repetition

Las repeticiones (agieren), lo representado, lo no representado y lo irrepresentable. Los conceptos de embrión pulsional y lo soterrado (verschuttet) constituirían un "otro inconciente" que se expresa en la repetición como destino. Para abarcarlo el analista operará desde su "mente" a través de su singularidad real, su capacidad de reverie, su inconsciente "no analizado", inédito, y la construcción-conjetura histórica (AU)

What is repeated (agiert), what is represented, not represented, and unrrepresentable. The concepts of instinctual embryo and Verschuttet constitute an other unconscious which is expressed through repetition as destiny. In order to integrate it the analyst will operate from his mind by means of his singularity, his capacity for reverie, his un-analyzed unconscious, and historial construction-conjeture (AU)

Children and young adults in a prolonged unconscious state after severe brain injury: long-term functional outcome as measured by the DRS and the GOSE after early intensive neurorehabilitation.

OBJECTIVE: To investigate the long-term (2-15 years) functional outcome of children and young adults who received an early intensive neurorehabilitation programme (EINP) after a prolonged period of unconsciousness due to severe brain injury; to differentiate between traumatic brain injury (TBI) and non-traumatic brain injury (nTBI); and to compare the results on two different outcome scales: the Disability Rating Scale (DRS) and the Glasgow Outcome Scale Extended (GOSE). SUBJECTS: One hundred and forty-five patients, who were admitted to EINP between December 1987 and January 2001. OUTCOME MEASURES: The Post-Acute Level of Consciousness scale (PALOC-s), the DRS, including categorized scores (DRScat), and the GOSE. RESULTS: The long-term functional level of 90 patients could be determined, of whom 25 were deceased. The mean DRS-score of the surviving patients was 6.8 (SD = 6.6); the mean score on the GOSE was 4.5 (SD = 1.7). There was a significant difference in the outcome amongst traumatic and non-traumatic patients (t88 = 4.21; p < 0.01). The correlation between the DRS and the GOSE was high (Spearman rho = 0.85; p < 0.01), as well as the correlation between the categorized scores of the DRS and the GOSE (Spearman rho = 0.81; p < 0.01). The distribution of outcome scores on the DRScat is more diverse than on the GOSE. Especially item 7 of the DRS, measuring functional independence, showed considerable variance in discriminating between different outcome levels. CONCLUSIONS: More patients with TBI than expected reached a (semi-) independent level of functioning, indicating a possible effect of EINP. Patients suffering from nTBI did not demonstrate these outcome levels. Only a few patients stayed in a vegetative state for more than a couple of years. In this cohort of severe brain-injured young people, the DRS offered the best investigative possibilities for long-term level of functioning.

Children and young adults in a prolonged unconscious state due to severe brain injury: outcome after an early intensive neurorehabilitation programme.

PRIMARY OBJECTIVE: The Rehabilitation Centre Leijpark in The Netherlands provides an Early Intensive Neurorehabilitation Programme (EINP) to children and young adults in a prolonged unconscious state after severe brain injury. In an extensive research project the effects of EINP were studied. This part of the project focused on the outcome in terms of level of consciousness (LOC) in relation to the specific characteristics of a retrospectively studied cohort. RESEARCH DESIGN: This study was executed according to a one-group archived pre-test-post-test design. SUBJECTS: Subjects were all consecutively admitted patients (n=145, 72% male) between December 1987-January 2001. Inclusion criteria were: age 0-25 years, within 6 months after injury, LOC at admission vegetative state (VS) or minimally conscious state (MCS). One hundred and four patients (72%) suffered a traumatic injury and 41 patients (28%) a non-traumatic injury. METHODS AND PROCEDURES: All patients had received EINP until they reached consciousness or until it was concluded that no progress was achieved during 3 months after the start of EINP. Medical files were investigated to collect the patients' characteristics and injury data, to determine the LOC at admission and at discharge and to determine the discharge destination. RESULTS: Almost two-thirds of the patients reached full consciousness. LOC at admission, aetiology and interval since injury were found to be significant prognostic factors. Traumatic patients had a much better outcome than non-traumatic patients. A comparison with earlier outcome studies showed a more favourable outcome than expected. It is argued that a multi-centre study is needed to confirm possible effects of EINP.

Telerehabilitation support for families at home caring for individuals in prolonged states of reduced consciousness.

OBJECTIVE: To investigate the use of telerehabilitation to support families caring at home for individuals with prolonged states of reduced consciousness. DESIGN: A comparison group approach. PARTICIPANTS: Participants were recruited from a special program that is part of a Model Systems brain injury program located in the Southeast. Five patients, ranging from Rancho 1 to Rancho 3 were discharged home with family members as the primary caregivers. PROCEDURES: Participant families were followed for 4 to 8 weeks via videophone. Follow-up telephone surveys were conducted with a family member 6 to 9 months after discharge and compared with a similar group that had not received the videophone follow-up. MAIN OUTCOME MEASURES: Present living status, number of emergency room visits, number of hospitalizations, the caregivers' perceptions of functional status and care needs, readmission for rehabilitation and perceived family needs as measured by the Family Needs Questionnaire (FNQ). RESULTS: More patients in the videoconferencing group were still living at home and had returned for rehabilitation. On the FNQ, families in the videophone group reported more of their needs met than families in the comparison group. CONCLUSIONS: The use of videoconferencing to bridge the transition to home for families caring for a family member at the Rancho 1 to Rancho 3 level may assist families in successfully caring for the individual in the home and reducing the number of perceived family needs.

Brain-injured persons in an altered state of consciousness: measures and intervention strategies.

We evaluated the states of consciousness of seven persons who had sustained a severe head injury, and describe the behavioural manifestations associated with four treatment strategies. The subjects were between the ages of 19 and 55 and were recruited from both acute and long-term care facilities; all were in an altered state of consciousness. The severity of the injury was measured by time in coma, the scores on the Glasgow Coma Scale [1] and the Coma Near Coma Scale [2]. Structured interventions consisted of visual, auditory, olfactory, gustatory and tactile stimulation; behaviour was measured using the Disability Rating Scale [3, 4] and a portion of the Levels of Cognitive Functioning Scale [5]. Sensory-motor indications were recorded using a questionnaire developed by Freeman [6] and a quality-of-life instrument, developed for use with individuals having multiple disabilities [7], was adapted for the purpose of this study. Our results suggest that the use of structured interventions in the first 24 months following severe head injury is associated with a trend towards improved auditory and visual skills performance, manual performance, swallowing and language. Whereas initially no subject had any form of verbalization, by the final evaluation five subjects had some form of communication, either verbal or non-verbal.

Outcome of children with prolonged unconsciousness and vegetative states.

The outcomes of 60 children unconscious for 90 days or longer following acquired brain injury are reported. Eight children who died had remained in persistent vegetative states. As expected, most neurologic improvement occurred within the first year after injury, although some delayed improvements were observed. Outcomes were strongly correlated with causes of brain injury. Better cognitive and motor function was observed with nonanoxic injuries. No child in this report with anoxic brain injury regained functional cognitive or motor skills, although 3 became socially responsive. The remarkable contrast with adults following acquired brain injury is the significantly longer survival of children. The only children who died had remained in persistent vegetative states.