Biobanking, digital health and privacy: the choices of 1410 volunteers and neurological patients regarding limitations on use of data and biological samples, return of results and sharing.

BACKGROUND: The growing diffusion of artificial intelligence, data science and digital health has highlighted the role of collection of data and biological samples, thus raising legal and ethical concerns regarding its use and dissemination. Further, the expansion of biobanking, from the basic collection of frozen specimens to the virtual biobanks of specimens and associated data that exist today, has given a revolutionary potential on healthcare systems, particularly in the field of neurological diseases, due to the inaccessibility of central nervous system and the need of non-invasive investigation approaches. Informed Consent (IC) is considered mandatory in all research studies and specimen collections, and must specifically take into account the ethical respect to the individuals to whom the used biological material and data belong. METHODS: We evaluated the attitudes of patients with neurological diseases (NP) and healthy volunteers (HV) towards the donation of biological samples to a biobank for future research studies on neurological diseases, and limitations on the use of data, related to the requirements set by the General Data Protection Regulation (GDPR). The study involved a total of 1454 subjects, including 502 HVs and 952 NPs, recruited at Santa Lucia Foundation IRCCS, Rome, from 2020 to 2024. RESULTS: We found that (i) almost all subjects agreed with the participation in biobanking (ii) and authorization to genetic studies (HV = 99.1%; NP = 98.3%); Regarding the return of results, (iii) we found a statistically significant difference between NP and HV, the latter preferring not to be informed of potential results (HV = 43%; NP = 11.3%; p < 0.0001); (iv) a small number limited the sharing inside European Union (EU) (HV = 4.6%; NP = 6.6%), whereas patients were more likely to refuse transfer outside EU (HV = 7.4%; NP = 10.7% p = 0.05); (v) nearly all patients agreed with the use of additional health data from EMR for research purposes (98.9%). CONCLUSIONS: Consent for the donation of material for research purposes is crucial for biobanking and biomedical research studies that use biological material of human origin. Here, we have shown that choices regarding participation in a neurological biobank can be different between HVs and NPs, even if the benefit for research and scientific progress is recognized. NP have a strong interest in being informed of possible results but limit sharing of samples, highlighting a perception of greater individual or relative benefit, while HV prefer a wide dissemination and sharing of data but not to have the return of the results, favoring a possible benefit for society and knowledge. The results underline the need to carefully manage biological material and data collected in biobanks, in compliance with the GDPR and the specific requests of donors.

Dynamic Stability, Symmetry, and Smoothness of Gait in People with Neurological Health Conditions.

Neurological disorders such as stroke, Parkinson's disease (PD), and severe traumatic brain injury (sTBI) are leading global causes of disability and mortality. This study aimed to assess the ability to walk of patients with sTBI, stroke, and PD, identifying the differences in dynamic postural stability, symmetry, and smoothness during various dynamic motor tasks. Sixty people with neurological disorders and 20 healthy participants were recruited. Inertial measurement unit (IMU) sensors were employed to measure spatiotemporal parameters and gait quality indices during different motor tasks. The Mini-BESTest, Berg Balance Scale, and Dynamic Gait Index Scoring were also used to evaluate balance and gait. People with stroke exhibited the most compromised biomechanical patterns, with lower walking speed, increased stride duration, and decreased stride frequency. They also showed higher upper body instability and greater variability in gait stability indices, as well as less gait symmetry and smoothness. PD and sTBI patients displayed significantly different temporal parameters and differences in stability parameters only at the pelvis level and in the smoothness index during both linear and curved paths. This study provides a biomechanical characterization of dynamic stability, symmetry, and smoothness in people with stroke, sTBI, and PD using an IMU-based ecological assessment.

Sham-controlled randomized multicentre trial of transcranial direct current stimulation for prolonged disorders of consciousness.

BACKGROUND AND PURPOSE: Transcranial direct current stimulation (tDCS) has been shown to improve signs of consciousness in a subset of patients with disorders of consciousness (DoC). However, no multicentre study confirmed its efficacy when applied during rehabilitation. In this randomized controlled double-blind study, the effects of tDCS whilst patients were in rehabilitation were tested at the group level and according to their diagnosis and aetiology to better target DoC patients who might repond to tDCS. METHODS: Patients received 2 mA tDCS or sham applied over the left prefrontal cortex for 4 weeks. Behavioural assessments were performed weekly and up to 3 months' follow-up. Analyses were conducted at the group and subgroup levels based on the diagnosis (minimally conscious state [MCS] and unresponsive wakefulness syndrome) and the aetiology (traumatic or non-traumatic). Interim analyses were planned to continue or stop the trial. RESULTS: The trial was stopped for futility when 62 patients from 10 centres were enrolled (44 ± 14 years, 37 ± 24.5 weeks post-injury, 18 women, 32 MCS, 39 non-traumatic). Whilst, at the group level, no treatment effect was found, the subgroup analyses at 3 months' follow-up revealed a significant improvement for patients in MCS and with traumatic aetiology. CONCLUSIONS: Transcranial direct current stimulation during rehabilitation does not seem to enhance patients' recovery. However, diagnosis and aetiology appear to be important factors leading to a response to the treatment. These findings bring novel insights into possible cortical plasticity changes in DoC patients given these differential results according to the subgroups of patients.

Risk factors for 2-year mortality in patients with prolonged disorders of consciousness: An international multicentre study.

BACKGROUND AND PURPOSE: Patients with prolonged disorders of consciousness (pDoC) have a high mortality rate due to medical complications. Because an accurate prognosis is essential for decision-making on patients' management, we analysed data from an international multicentre prospective cohort study to evaluate 2-year mortality rate and bedside predictors of mortality. METHODS: We enrolled adult patients in prolonged vegetative state/unresponsive wakefulness syndrome (VS/UWS) or minimally conscious state (MCS) after traumatic and nontraumatic brain injury within 3 months postinjury. At enrolment, we collected demographic (age, sex), anamnestic (aetiology, time postinjury), clinical (Coma Recovery Scale-Revised [CRS-R], Disability Rating Scale, Nociception Coma Scale-Revised), and neurophysiologic (electroencephalogram [EEG], somatosensory evoked and event-related potentials) data. Patients were followed up to gather data on mortality up to 24 months postinjury. RESULTS: Among 143 traumatic (n = 55) and nontraumatic (n = 88) patients (VS/UWS, n = 68, 19 females; MCS, n = 75, 22 females), 41 (28.7%) died within 24 months postinjury. Mortality rate was higher in VS/UWS (42.6%) than in MCS (16%; p < 0.001). Multivariate regression in VS/UWS showed that significant predictors of mortality were older age and lower CRS-R total score, whereas in MCS female sex and absence of alpha rhythm on EEG at study entry were significant predictors. CONCLUSIONS: This study demonstrated that a feasible multimodal assessment in the postacute phase can help clinicians to identify patients with pDoC at higher risk of mortality within 24 months after brain injury. This evidence can help clinicians and patients' families to navigate the complex clinical decision-making process and promote an international standardization of prognostic procedures for patients with pDoC.

Neural underpinnings of the slowness of information processing in patients with traumatic brain injury: insights from tract-based spatial statistics.

Slowness of information processing (SIP) is frequently reported after traumatic brain injury (TBI). Previous studies point toward a pivotal role of white matter damage on speed of information processing. However, little is known about the more comprehensive and ecological assessment of SIP in TBI. Here, we combined an ecological assessment of SIP with the use of tract-based spatial statistics (TBSS) on individuals' fractional anisotropy (FA) maps. Twenty-six moderate-to-severe patients with TBI (21 males and 5 females) participated in this study: 10 individuals were classified as not having SIP (SIP-) and 16 were classified as having SIP (SIP +). SIP + showed lower FA in bilateral anterior thalamic radiation, corticospinal tract, cingulum, and forceps, as well as in bilateral inferior fronto-occipital, inferior and superior longitudinal fasciculi and uncinate fasciculus. Overall, this result is consistent with and expands previous reports on information processing speed to a more comprehensive and ecological perspective on SIP in TBI.

Neurorehabilitation for people with disorders of consciousness: an international survey of health-care structures and access to treatment, (Part 1).

AIMS: The provision of rehabilitation services for people with disorders of consciousness (DoC) may vary due to geographical, financial, and political factors. The extent of this variability and the implementation of treatment standards across countries is unknown. This study explored international neurorehabilitation systems for people with DoC. METHODS: An online survey (SurveyMonkey®) was disseminated to all members of the International Brain Injury Association (IBIA) DoC Special Interest Group (SIG) examining existing rehabilitation systems and access to them. RESULTS: Respondents (n = 35) were from 14 countries. Specialized neurorehabilitation was available with varying degrees of access and duration. Commencement of specialized neurorehabilitation averaged 3-4 weeks for traumatic brain injury (TBI) and 5-8 weeks for non-traumatic brain injury (nTBI) etiologies. Length of stay in inpatient rehabilitation was 1-3 months for TBI and 4-6 months for nTBI. There were major differences in access to services and funding across countries. The majority of respondents felt there were not enough resources in place to provide appropriate neurorehabilitation. CONCLUSIONS: There exists inter-country differences for DoC neurorehabilitation after severe acquired brain injury. Further work is needed to implement DoC treatment standards at an international level.

Vestibular Rehabilitation Improves Gait Quality and Activities of Daily Living in People with Severe Traumatic Brain Injury: A Randomized Clinical Trial.

Neurorehabilitation research in patients with traumatic brain injury (TBI) showed how vestibular rehabilitation (VR) treatments positively affect concussion-related symptoms, but no studies have been carried out in patients with severe TBI (sTBI) during post-acute intensive neurorehabilitation. We aimed at testing this effect by combining sensor-based gait analysis and clinical scales assessment. We hypothesized that integrating VR in post-acute neurorehabilitation training might improve gait quality and activity of daily living (ADL) in sTBI patients. A two-arm, single-blind randomized controlled trial with 8 weeks of follow-up was performed including thirty sTBI inpatients that underwent an 8-week rehabilitation program including either a VR or a conventional program. Gait quality parameters were obtained using body-mounted magneto-inertial sensors during instrumented linear and curvilinear walking tests. A 4X2 mixed model ANOVA was used to investigate session−group interactions and main effects. Patients undergoing VR exhibited improvements in ADL, showing early improvements in clinical scores. Sensor-based assessment of curvilinear pathways highlighted significant VR-related improvements in gait smoothness over time (p < 0.05), whereas both treatments exhibited distinct improvements in gait quality. Integrating VR in conventional neurorehabilitation is a suitable strategy to improve gait smoothness and ADL in sTBI patients. Instrumented protocols are further promoted as an additional measure to quantify the efficacy of neurorehabilitation treatments.

Epilepsy in prolonged disorders of consciousness: a systematic review.

To date, no guideline exists for the management of epilepsy in patients with prolonged Disorders of Consciousness (DoC). This review aimed to assess the occurrence of epilepsy and epileptic abnormalities (EA) in these patients, to determine their impact on recovery; and to review the effect of antiepileptic drugs (AED) and therapeutic interventions on seizure occurrence and consciousness recovery. A structured search for studies on prolonged DoC and epilepsy was undertaken following PRISMA guidelines. From an initial search resulting in 5,775 titles, twelve studies met inclusion criteria. The occurrence of epilepsy and EA in DoC was poorly and inconsistently reported across studies. The results estimated a seizure prevalence of 27% in DoC. No conclusive data were found for the effects of AED on recovery nor on the influence of any therapeutic interventions on seizure occurrence. Given the scarcity of data, it is premature to make evidence-based recommendations on epilepsy in prolonged DoC. Based on this review and current clinical practices the following are recommended: (1) repeated standard EEG for detecting seizures and EA; (2) treating epilepsy while avoiding AEDs with sedating or cognitive side-effects. Future research should use standardized classification systems for seizures and EA.

User-centered practices in the eyes of informal caregivers of in-patients with severe acquired brain injury: needs, caring experience, and satisfaction.

OBJECTIVE: This study examines the perceived needs, experience, and satisfaction of informal caregivers (ICGs) in in-hospital settings, related to their involvement in the design and delivery of services together with hospital staff, namely co-production. DESIGN: To obtain a picture of current ICG-staff relationship, a multicenter observational study was carried out. Participants were 75 ICGs recruited in five dedicated in-patient neurorehabilitation wards. Participants answered a self-report questionnaire tapping perceived information/communication needs, emotional/social needs, and their satisfaction; family-centered practices implemented by the staff (namely involving practices and cooperative communication); and ICGs' satisfaction with the service. RESULTS: Need satisfaction related positively to staff practices aimed at involving IGCs in treatment and training, but not in decision-making. Involving practices concerning treatment also related positively to ICGs' information/communication needs. In addition, the more the staff involved ICGs in decision-making and promoted cooperative communication regarding treatment, the more ICGs felt that their collaboration in the healthcare process was valuable. Finally, all involvement practices and cooperative communication were positively related to ICGs' overall satisfaction with the service. CONCLUSION: The results of the study help to identify gaps in meeting ICGs' needs and to promote strategies to implement family participation toward co-production in in-hospital settings.

The unidimensionality of the five Brain Injury Rehabilitation Trust Personality Questionnaires (BIRT-PQs) may be improved: preliminary evidence from classical psychometrics.

Objective: To assess the internal construct validity (ICV) of the five Brain Injury Rehabilitation Trust Personality Questionnaires (BIRT-PQ) with Classical Test Theory methods.Methods: Multicenter cross-sectional study involving 11 Italian rehabilitation centers. BIRT-PQs were administered to patients with severe Acquired Brain Injury and their respective caregivers. ICV was assessed by the mean of an internal consistency analysis (ICA) and a Confirmatory Factor Analysis (CFA).Results: Data from 154 patients and their respective caregivers were pooled, giving a total sample of 308 subjects. Despite good overall values (alphas ranging from 0.811 to 0.937), the ICA revealed that several items within each scale did not contribute as expected to the total score. This result was confirmed by the CFA, which showed the misfit of the data to a unidimensional model (RMSEA ranging from 0.077 to 0.097). However, after accounting for local dependency found within the data, fitness to a unidimensional model improved significantly (RMSEA ranging from 0.050 to 0.062).Conclusion: Despite some limitations, our analyses demonstrated the lack of ICV for the BIRT-PQ total scores. It is envisaged that a more comprehensive ICV analysis will be performed with Rasch analysis, aiming to improve both the measurement properties and the administrative burden of each BIRT-PQ.

Does Curved Walking Sharpen the Assessment of Gait Disorders? An Instrumented Approach Based on Wearable Inertial Sensors.

Gait and balance assessment in the clinical context mainly focuses on straight walking. Despite that curved trajectories and turning are commonly faced in our everyday life and represent a challenge for people with gait disorders. The adoption of curvilinear trajectories in the rehabilitation practice could have important implications for the definition of protocols tailored on individual's needs. The aim of this study was to contribute toward the quantitative characterization of straight versus curved walking using an ecological approach and focusing on healthy and neurological populations. Twenty healthy adults (control group (CG)) and 20 patients with Traumatic Brain Injury (TBI) (9 severe, sTBI-S, and 11 very severe, sTBI-VS) performed a 10 m and a Figure-of-8 Walk Test while wearing four inertial sensors that were located on both tibiae, sternum and pelvis. Spatiotemporal and gait quality indices that were related to locomotion stability, symmetry, and smoothness were obtained. The results show that spatiotemporal, stability, and symmetry-related gait patterns are challenged by curved walking both in healthy subjects and sTBI-S, whereas no difference was displayed for sTBI-VS. The use of straight walking alone to assess gait disorders is thus discouraged, particularly in patients with good walking abilities, in favor of the adoption of complementary tests that were also based on curved paths.

Coma Recovery Scale-Revised With and Without the Emotional Stimulation of Caregivers.

The Coma Recovery Scale-Revised (CRS-R) is the gold standard of responsiveness assessment in patients with disorder of consciousness. The purpose of this study is to search for the efficacy of the caregivers' involvement in the evaluation of responsiveness in these patients. Responsiveness assessment was performed in 15 patients with CRS-R. The CRS-R was administered with and without the emotional stimulation of the primary caregiver at different times. Our preliminary findings seem to suggest that, including also the caregivers during CRS-R assessment, may obtain better responsiveness scoring than that obtained by professionals and might reduce the misdiagnosis rate.

Résultats à l'échelle d'évaluation d'éveil lors d'un coma avec ou sans la stimulation affective de personnes soignantes. L'échelle d'évaluation d'éveil lors d'un coma (Coma Recovery Scale-Revised) demeure la norme de référence en matière d'évaluation de la réactivité de patients aux prises avec des troubles de la conscience. L'objectif de cette étude est d'analyser l'impact de l'implication de personnes soignantes dans l'évaluation de la réactivité de ces patients. Une telle analyse a été effectuée chez quinze patients soumis à l'échelle d'évaluation d'éveil lors d'un coma, et ce, avec ou sans la stimulation affective d'une personne soignante et à différents moments. À cet égard, nos constatations préliminaires semblent indiquer que les scores de réactivité à cette échelle pourraient, en présence de personnes soignantes, dépasser ceux obtenus en compagnie de professionnels et ainsi réduire les taux de diagnostics erronés.

Late recovery of responsiveness after intra-thecal baclofen pump implantation and the role of diffuse pain and severe spasticity: a case report.

Patients with a prolonged disorder of consciousness (DoC) may present with severe spasticity and diffuse pain, which might impair motor output, thus preventing any possible behavioral responsiveness. A 26-year-old man affected by frontoparietal hemorrhage was operated by hematoma evacuation and decompressive craniectomy; coma persisted for 1 month; cranioplasty and ventriculo-peritoneal shunting was performed after 4 months. At admission in rehabilitation, he was diagnosed as vegetative state/unresponsive wakefulness syndrome (VS/UWS). The implantation of intrathecal baclofen (ITB) pump (Medtronic SynchroMed™ II), 14 months after, (60 µg/daily), dramatically improved behavioral responsiveness according to Coma Recovery Scale-Revised (CRS-R) from 6 to 12 (1 month after ITB). Nociception Coma Scale-Revised (NCS-R) also changed from 4 to 8 at the same time points. This case report may be an example of covert cognition that should have been diagnosed as a functional locked-in syndrome or motor-cognitive dissociation, rather than as VS/UWS.

Disorders of consciousness terminology: history, evolution and future directions.

There has been a significant evolution of nomenclature with regards to classification of persons with disorders of consciousness (DoC) over the last 100 years. This paper provides a review of the evolution of this terminology with discussion of the advantages and disadvantages of historical and current terms. Recommendations for how this evolution should continue moving forward in the best interest of patients, their families, society, clinical care, and research will also be addressed. The taxonomy we choose, hopefully by international consensus, has multifaceted implications that go well beyond just a debate on nomenclature.

An International survey on diagnostic and prognostic protocols in patients with disorder of consciousness.

To date, no international guidelines or recommendations for diagnosis or prognosis of patients with disorders of consciousness (DoC) have been established. The International Brain Injury Association's (IBIA) Special Interest Group on Disorders of Consciousness (DoC-SIG) launched an international multicenter survey to compare diagnostic and prognostic procedures across countries and clinical settings. Objectives: To explore which specific diagnostic protocols and prognostic indices were utilized in the care for persons with DoC in different countries and to determine the usage, if any, of national guidelines in the care of such patients. Methods: The questionnaire included 17 questions in two distinct sections (I - clinical and instrumental tools and involvement of caregivers and II - clinical, anamnestic and instrumental markers). Results: Physicians composed 50% of the survey respondents (120) and were all involved in post-acute rehabilitation care. In the majority of countries, respondents reported that there were no national guidelines or recommendations for DoC care. The Glasgow Coma Scale (GCS) and the Coma Recovery Scale-Revised (CRS-R) were the most frequently used clinical scales for diagnostic purposes. The majority of respondents reported the involvement of caregivers in the evaluation of behavioral responsiveness of patient with DoC. The survey indicated that only a few centers performed neurophysiological investigations routinely as diagnostic instrumental procedures. Our results suggest that international guidelines and recommendations for the care of persons with DoC still need to be formulated and ideally agreed to by consensus.

Gait Quality Assessment in Survivors from Severe Traumatic Brain Injury: An Instrumented Approach Based on Inertial Sensors.

Despite existing evidence that gait disorders are a common consequence of severe traumatic brain injury (sTBI), the literature describing gait instability in sTBI survivors is scant. Thus, the present study aims at quantifying gait patterns in sTBI through wearable inertial sensors and investigating the association of sensor-based gait quality indices with the scores of commonly administered clinical scales. Twenty healthy adults (control group, CG) and 20 people who suffered from a sTBI were recruited. The Berg balance scale, community balance and mobility scale, and dynamic gait index (DGI) were administered to sTBI participants, who were further divided into two subgroups, severe and very severe, according to their score in the DGI. Participants performed the 10 m walk, the Figure-of-8 walk, and the Fukuda stepping tests, while wearing five inertial sensors. Significant differences were found among the three groups, discriminating not only between CG and sTBI, but also for walking ability levels. Several indices displayed a significant correlation with clinical scales scores, especially in the 10 m walking and Figure-of-8 walk tests. Results show that the use of wearable sensors allows the obtainment of quantitative information about a patient's gait disorders and discrimination between different levels of walking abilities, supporting the rehabilitative staff in designing tailored therapeutic interventions.

A new tool to assess responsiveness in disorders of consciousness (DoC): a preliminary study on the Brief Post-Coma Scale (BPCS).

INTRODUCTION: The Brief Post-Coma Scale (BPCS) is an easy diagnostic tool for individuals with disorders of consciousness (DoC), in a reduced version from a previously Post-Coma Scale, that could distinguish patients in the minimally conscious state (MCS) from those in unresponsive wakefulness syndrome (UWS), formerly defined as vegetative state (VS). OBJECTIVE: Aim of the study was to assess the diagnostic validity of the BPCS in comparison with the Coma Recovery Scale-Revised (CRS-R), in its Italian validated version, the Disability Rating Scale (DRS), the Level of Cognitive Functioning (LCF), and the Glasgow Outcome Scale (GOS). METHODS: In an Italian multicenter study on 545 patients with DoC, 36 post-acute rehabilitation wards, 32 long-term care centers, and 2 family associations participated to data collection. RESULTS: Statistically significant correlations were found between the BPCS and the other clinical scales: R = 0.586 (p < 0.001) with LCF, R = - 0.566 (p < 0.001) with DRS, R = 0.622 (p < 0.001) with CRS-R. The BPCS scores resulted significantly correlated with the time from acute event (R = 0.117, p = 0.006). Patients with GOS score 2 had mean BPCS of 1.84 ± 1.19, whereas those with GOS 3 had significantly higher scores 3.88 ± 1.71 (p < 0.001). Similarly, in patients with vegetative state/UWS (VS/UWS), the mean BPSC score was 1.71 ± 1.09, significantly lower (p < 0.001) than that of patients with minimally conscious state (BPCS = 3.83 ± 1.29). Finally, the agreement of the BPCS and clinical diagnosis was of 84.4%, with an odds ratio OR = 3.781 (95% CI = 3.026-4.725, p < 0.001). CONCLUSIONS: The BPCS has demonstrated statistically significant correlations with the most commonly used scales in persons with DoC.

Improvement rate of patients with severe brain injury during post-acute intensive rehabilitation.

Patients with severe acquired brain injury (SABI) may evolve towards different outcomes. The primary aim was to evaluate the clinical evolution of a large population of patients with SABI admitted to post-acute rehabilitation from 2001 to 2016, diagnosed with severe brain injury (GCS ≤ 8) in the acute phase and a coma duration of at least 24 h. The possible changes between the admission time to a post-acute rehabilitation hospital and the discharge time were measured by means of Glasgow Outcome Scale (GOS), Level of Cognitive Functioning (LCF), and Disability Rating Scale (DRS). We also correlated the improvement rate with some sociodemographic and clinical features of the individuals with SABI enrolled. Data of 890 patients were analyzed (54% TBI, length of stay = 162 ± 186 days, GCS = 7.46 ± 1.28); time interval from the SABI (OR = 0.246, CI 95% = 0.181 - 0.333), scores at admission of LCF (OR = 2.243, CI 95% = 1.492 - 3.73), GOS (OR = 0.138, CI 95% = 0.071 - 0.266), DRS (OR = 0.457, CI 95% = 0.330 - 0.632), and etiology (OR = 2.273, CI 95% = 1.676 - 3.084) played a significant role (p < 0.001, explained variance 69.9%) for improving GOS score. Time interval from the SABI to admission in our post-acute rehabilitation ward (OR = 0.300, CI 95% = 0.179 - 0.501, p < 0.001), length of rehabilitation stay (OR = 2.808, CI 95% = 1.694 - 4.653, p < 0.001), and etiology (OR = 1.769, CI 95% = 1.095 - 2.857, p = 0.020) led to a statistically significant improvement in DRS (explained variance 91%). The most significant predictive factors for the outcome of patients with SABI were etiology, time interval from SABI to admission in rehabilitation, and length of rehabilitation stay.

Early rehabilitation: benefits in patients with severe acquired brain injury.

Establish the best time to start rehabilitation by means of scientific evidence. Observational study in patients with a diagnosis of Severe Brain Injury who received intensive inpatient rehabilitation after acute care. 1470 subjects enrolled: 651 with Traumatic Brain Injury (TBI) and 819 with Non-TBI. Male gender was prevalent in the population study, but sex distribution was not different among groups, with a prevalence of male gender in both populations. This project involved 29 rehabilitation facilities for Severe ABI. The registry was an electronic database, remained active only during the period of data collection. The patients were divided into three different categories according to the time interval from brain injury to inpatient rehabilitation admission and demographic and clinical data were collected. Etiology, time interval from injury to inpatient rehabilitation, disability severity, the presence of tracheostomy at admission to the rehabilitation facility, rehabilitation length of stay and transfer back to acute care wards because of medical, surgical or neurosurgical complications. The interval from brain injury to rehabilitation facilities admission increases along with age, brain injury severity according to DRS scores, the presence of a tracheal tube and the percentage of transfers back to acute care wards from rehabilitation facilities, because of medical, surgical or neurosurgical complications. The better recovery and more positive outcomes, reported as resulting from early rehabilitation, may be due more to less severity of brain injury and fewer complications in the acute and post-acute phase than to when the rehabilitation starts.

Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers.

The primary aim of the study was to adopt QOLIBRI (quality of life after brain injury) questionnaire in a proxy version (Q-Pro), i.e., to use caregivers for comparison and to evaluate whether TBI patients' judgment corresponds to that of their caregivers since the possible self-awareness deficit of the persons with TBI. A preliminary sample of 19 outpatients with TBI and their proxies was first evaluated with the Patient Competency Rating Scale to assess patients' self-awareness; then they were evaluated with the QOLIBRI Patient version (Q-Pt) and a patient-centered version of the Q-Pro. Subsequently, 55 patients and their caregivers were evaluated using the patient-centered and the caregiver-centered Q-Pro versions. Q-Pt for assessing Quality of Life (QoL) after TBI, as patients' subjective perspective and Q-Pro to assess the QoL of patients as perceived by the caregivers. The majority of patients (62.2%) showed better self-perception of QoL than their proxies; however, patients with low self-awareness were less satisfied than patients with adequate self-awareness. Low self-awareness does not impair the ability of patients with TBI to report on satisfaction with QoL as self-perceived.