Davide Sattin

Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: results from a national study.

Objective: The aim of this study is to evaluate the burden of caregivers of patients with disorders of consciousness (DOCs), considering psychosocial difficulties, health condition and financial aspects. Design: This is an observational multi-centre study. Four hundred and eighty-seven participants were assessed using the Caregiver Needs Assessment, Family Strain Questionnaire, Short Form 12, Spielberger State Trait Anxiety Inventory-Y, Beck Depression Inventory, Prolonged Grief Disorder Questionnaire and Coping Orientations to Problem Experiences. Outcomes and results: The sample had lower scores both in Physical (M = 49.85, SD = 7.66) and Mental (M = 39.37, SD = 12.90) health and a higher level of anxiety (p < 0.001) in comparison to the Italian normative sample. More than half of the sample manifested a high level of depressive symptoms (59.5%) and 27.6% satisfied criteria for Prolonged Grief Disorder. This sample reported needs to know the disease of their beloved, high needs for information and communication, several problems in social involvement and in emotional burden. The most frequently adopted coping strategies are acceptance, turning to religion, positive reinterpretation and planning. Finally, 40.2% of caregivers report to earn a net income of less than 17 000 euros per year. Conclusions: These results showed a high burden related to providing care to patients with DOCs. This study sets the scene to plan comprehensive support strategies for caregivers in order to diminish level of burden.

Quality-of-life and disability in patients with stroke

ObjectiveThe aim of this study was to assess the impact of stroke on health-related quality-of-life (HRQoL) and disability, the relationships between the two constructs, and to what extent these two constructs are affected when perceived health state changes. DesignThe World Health Organization Disability Assessment Schedule (WHO-DAS II) and the 36-Item Short-Form Health Survey (SF-36) were administered via mail to a sample of adult stroke survivors. Comparison against normative Italian values was made using one-sample t test. SF-36 and WHO-DAS II scores were compared between employed and unemployed patients and between patients self-reporting improved, unchanged, and decreased health state using analysis of variance with least significant difference post hoc test. The relationships between SF-36 and WHO-DAS II were assessed using Pearson correlation. ResultsA total of 111 patients were enrolled. The SF-36 and WHO-DAS II scores of stroke patients were worse in comparison with Italian normative values. Moderate to strong correlations between all scales and the summary score of WHO-DAS II and SF-36 were found: The worse the disability is, the lower the HRQoL. Patients reporting worse health status in the previous year reported higher levels of disability and lower HRQoL. Employed persons had higher HRQoL and lower disability levels. ConclusionsThe generic HRQoL instrument and disability schedule used in this study demonstrated strong relationship between these two dimensions. It also gave a more detailed picture of the aspects of disability and HRQoL that are most relevant for the persons after stroke and that should be studied further in the future research.

Burden of caregivers of patients in Vegetative State and Minimally Conscious State

To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS).

An Italian population study on 600 persons in vegetative state and minimally conscious state

Objective: To describes socio-demographic and clinical features of adults and children in vegetative state (VS) and minimally conscious state (MCS). Design: Observational cross-sectional study. Methods: Demographic, aetiological and clinical data were collected, together with patients’ management procedures. Mann-Whitney U-test was used for continuous variables and chi-squared test for categorical variables. Results: Six hundred patients (69.7% in VS; 6% children) were enrolled. No difference regarding age at enrolment, age at acute event and disease duration was observed between VS and MCS. Disease duration was superior to 10 years for 3.3% of the whole sample and 64.3–77% of cases had a non-traumatic aetiology. Mean number of drugs per adult patient was four and decreased consistently with increased disease duration. Discussion: Patients with VS and MCS were similar for age at acute event and at enrolment, both over 50 years, as well as for the frequency of non-traumatic aetiology. Disease duration was similar for both conditions and 2.6% of VS and 4.8% of MCS patients survived for more than 10 years. Finally care and treatment needs are similar and not related to diagnosis.

ICF in neurology: functioning and disability in patients with migraine, myasthenia gravis and Parkinson's disease.

Purpose. To report and compare functional features of patients with migraine, myasthenia gravis (MG) and Parkinsons disease (PD) with the International Classification of Functioning, Disability and Health (ICF). Method. Adult patients with migraine, MG and PD were enrolled and the ICF checklist administered. Count-based indexes were calculated for each ICF chapter and domain. Indexes were compared across conditions by means of ANOVA; relationships between ICF domains were evaluated using Spearmans correlation; group based on disability status were defined through cluster analysis and compared with disease groups using χ2 test. Finally, most prevalent ICF categories were identified. Results. A total of 300 patients were enrolled and specific differences in BF, BS, A&P and EF indexes are reported. Spearmans correlations reported moderate relationships between BF and A&P indexes, whereas the correlation between A&P and EF is lower. Cluster analysis and χ2 test show that patients with Migraine and MG are more likely to report moderate and low disability, whereas patients with PD are more likely to report moderate or severe disability. A total of 60 ICF relevant categories, mostly from A&P, were identified. Conclusions. Our study provided a description of functioning and disability domains in migraine, MG and PD and enabled to report the impact of EF in determining the actual disability experience.

Altered resting state effective connectivity in long-standing vegetative state patients: An EEG study

OBJECTIVE Recent evidence mainly based on hemodynamic measures suggests that the impairment of functional connections between different brain areas may help to clarify the neuronal dysfunction occurring in patients with disorders of consciousness (DOC). The aim of this study was to evaluate effective EEG connectivity in a cohort of 18 patients in a chronic vegetative state (VS) observed years after the occurrence of hypoxic (eight) and traumatic or hemorrhagic brain insult. METHODS we analysed the EEG signals recorded under resting conditions using a frequency domain linear index of connectivity (partial directed coherence: PDC) estimated from a multivariate autoregressive model. The results were compared with those obtained in ten healthy controls. RESULTS Our findings indicated significant connectivity changes in EEG activities in delta and alpha bands. The VS patients showed a significant and widespread decrease in delta band connectivity, whereas the alpha activity was hyper-connected in the central and posterior cortical regions. CONCLUSION These changes suggest the occurrence of severe circuitry derangements probably due to the loose control of the subcortical connections. The alpha hyper-synchronisation may be due to simplified networks mainly involving the short-range connections between intrinsically oscillatory cortical neurons that generate aberrant EEG alpha sources. This increased connectivity may be interpreted as a reduction in information capacity, implying an increasing prevalence of stereotypic activity patterns. SIGNIFICANCE Our observations suggest a remarkable rearrangement of connectivity in patients with long-standing VS. We hypothesize that in persistent VS, after a first period characterized by a breakdown of cortical connectivity, neurodegenerative processes, largely independent from the type of initial insult, lead to cortex de-afferentation and to a severe reduction of possible cortical activity patterns and states.

Burnout in healthcare professionals working with patients with disorders of consciousness

OBJECTIVE Healthcare and social professionals working with patients with chronic diseases such as disorders of consciousness (DOCs) are at risk for developing burnout, a stress-induced occupational syndrome. The aim of this study was to evaluate burnout among professionals working with patients with DOCs in post-acute and long-term care institutions. PARTICIPANTS AND METHODS Healthcare and social professionals were enrolled in 78 Italian institutions and completed the 22-item Maslach Burnout Inventory (MBI), which investigates emotional exhaustion (EE), depersonalization (DP), and personal accomplishment (PA). RESULTS 1149 questionnaires were returned. Respondents showed statistically lower level of burnout in EE, DP and PA compared to normative data of Italian healthcare practitioners (p< 0.001) and 41.7% showed high scores in at least one subscale. Working hours per week correlated positively with EE (r=0.150, p<0.001) and negatively with PA (r= -0.111, p=0.005). Mann-Whitney U and the Kruskal-Wallis tests were used to assess differences between groups. Nurses reported statistically significant higher levels of DP and lower levels of PA compared to other professionals. CONCLUSIONS Professionals working with patients with DOCs complained moderate to low levels of burnout. A better understanding of the components of occupational stress may allow the development of a targeted strategy to prevent negative outcomes, enhance well-being of professionals who suffered burnout and, in turn, improve quality of life of patients.

Multimodal study of default-mode network integrity in disorders of consciousness

Understanding residual brain function in disorders of consciousness poses extraordinary challenges, and imaging examinations are needed to complement clinical assessment. The default‐mode network (DMN) is known to be dysfunctional, although correlation with level of consciousness remains controversial. We investigated DMN activity with resting‐state functional magnetic resonance imaging (rs‐fMRI), alongside its structural and metabolic integrity, aiming to elucidate the corresponding associations with clinical assessment.

Impact of functional MRI data preprocessing pipeline on default-mode network detectability in patients with disorders of consciousness

An emerging application of resting-state functional MRI (rs-fMRI) is the study of patients with disorders of consciousness (DoC), where integrity of default-mode network (DMN) activity is associated to the clinical level of preservation of consciousness. Due to the inherent inability to follow verbal instructions, arousal induced by scanning noise and postural pain, these patients tend to exhibit substantial levels of movement. This results in spurious, non-neural fluctuations of the rs-fMRI signal, which impair the evaluation of residual functional connectivity. Here, the effect of data preprocessing choices on the detectability of the DMN was systematically evaluated in a representative cohort of 30 clinically and etiologically heterogeneous DoC patients and 33 healthy controls. Starting from a standard preprocessing pipeline, additional steps were gradually inserted, namely band-pass filtering (BPF), removal of co-variance with the movement vectors, removal of co-variance with the global brain parenchyma signal, rejection of realignment outlier volumes and ventricle masking. Both independent-component analysis (ICA) and seed-based analysis (SBA) were performed, and DMN detectability was assessed quantitatively as well as visually. The results of the present study strongly show that the detection of DMN activity in the sub-optimal fMRI series acquired on DoC patients is contingent on the use of adequate filtering steps. ICA and SBA are differently affected but give convergent findings for high-grade preprocessing. We propose that future studies in this area should adopt the described preprocessing procedures as a minimum standard to reduce the probability of wrongly inferring that DMN activity is absent.

Informal caregivers of patients with disorders of consciousness: Experience of ambiguous loss

Abstract Primary objective: This study aimed at better understanding of the complex psychological process underlying the demanding situation of taking care of a relative with disorder of consciousness (DOCs). Research design: This is a qualitative study based on the grounded theory constant comparative method. Methods and procedures: Narratives of informal caregivers were collected through in-depth interviews with a psychologist. A three-step coding scheme was applied: coding of narratives to label the specific contents; organization of codes into sub-categories and categories; and theoretical coding to describe the relation between categories. Main outcomes and results: Twenty informal caregivers participated in one in-depth interview between December 2011 and May 2012. Four major themes emerged: Another person with past in common; Losing and finding myself; Old and new ways of being in relationship; and Dealing with concerns. These themes represent caregivers’ efforts to deal with the situation in which their relative is at the same time present and absent. The core salient feature emerging from all these themes is the experience of ambiguous loss. Conclusions: Features of ambiguous loss that emerged in this study could guide clinicians’ interventions to support adjustment of caregivers of patients with DOCs.