Analysis of Italian regulations on pathways of care for patients in a vegetative or minimally conscious state.

Different rehabilitation models for persons diagnosed with disorders of consciousness have been proposed in Europe during the last decade. In Italy, the Ministry of Health has defined a national healthcare model, although, to date, there is a lack of information on how this has been implemented at regional level. The INCARICO project collected information on different regional regulations, analysing ethical aspects and mapping care facilities (numbers of beds and medical units) in eleven regional territories. The researchers found a total of 106 laws; differences emerged both between regions and versus the national model, showing that patients with the same diagnosis may follow different pathways of care. An ongoing cultural shift from a treatment-oriented medical approach towards a care-oriented integrated biopsychosocial approach was found in all the welfare and healthcare systems analysed. Future studies are needed to explore the relationship between healthcare systems and the quality of services provided.

Caregiver's burden in disorders of consciousness: a longitudinal study.

OBJECTIVES: To study the changes in the burden of informal caregivers of patients with disorders of consciousness (DOC) over time. MATERIALS AND METHODS: Short Form-12, Family Strain Questionnaire, Beck Depression Inventory and Coping Orientations to Problem Experiences were administered. RESULTS: Data collected on 216 informal caregivers of patients with DOC (59.6% females, mean age 53.4 ± 12.7 years old) were analysed at two time-points (mean distance is 2.7 years). Results of the national study revealed that caregivers' mental health improved (T0: M = 41.1, SD = 11.8; T1: M = 45.8, SD = 11.7), whereas the emotional burden (T0: M = 7.4, SD = 3.6; T1: M = 6.6, SD = 3.9) and the presence of depressive symptoms (T0: M = 14.3, SD = 9.3; T1: M = 11.7, SD = 10.2) as well as the need for information about the disease (T0: M = 2.7, SD = 1.2; T1: M = 2.2, SD = 1.4), thoughts of death (T0: M = 3.6, SD = 1.5; T1: M = 3.1, SD = 1.6) and the use of avoiding coping strategy (T0: M = 7.8, SD = 1.0; T1: M = 6.0, SD = 1.3) decreased at T1. Furthermore, depressive symptoms positively correlated with the emotional burden (0.580) and negatively with the mental health component of caregivers' self-perceived health condition (-0.473). Physical (-0.308) and mental health (-0.444) negatively correlated with emotional burden. Finally, the acute event and patients' health condition still have a deep impact on the economic situation of the family. CONCLUSION: Although high level of burden was observed, it tends to decrease over time, except for financial burden. Hence, this study suggests the importance to plan strategies or targeted interventions in order to reduce the psychosocial and financial burden associated with caregiving.

Central olfactory processing in patients with disorders of consciousness.

BACKGROUND AND PURPOSE: Previous studies have demonstrated that individuals suffering from disorder of consciousness (DOC) maintain some minor neural processing of percepts mediated by senses that early in their pathway intersect the thalamus, a key dysfunctional area in DOC patients. Here the degree of sensory preservation within the olfactory system, a system that lacks an obligatory thalamic relay, and its relationship to the consciousness level in DOC patients of various etiologies was assessed. METHODS: Clinical Coma Recovery Scale - Revised (CRS-R) as well as cerebral responses to odors by means of functional magnetic resonance were obtained in a group of vegetative state/unresponsive wakefulness syndrome (n = 26) patients, minimally conscious state (n = 7) patients and healthy controls (n = 25). RESULTS: A majority of vegetative state/unresponsive wakefulness syndrome patients (58%) and 100% of minimally conscious state patients demonstrated a significant preservation of olfactory neural processing, manifested by activation within the piriform cortex, an area considered as a primary olfactory region. Degree of preservation of olfactory processing differed linearly in line with the patients' etiologies where groups demonstrating greater conscious awareness demonstrated more significant processing. Viewed over all DOC patients, there was a significant negative association between odor-related activity in the orbitofrontal cortex and CRS-R scores. CONCLUSIONS: It is demonstrated that DOC patients exhibit a significant preservation of olfactory neural processing with a clear relationship to etiopathologies and clinical measures even years after of chronification of DOC.

Caregivers of patients with disorder of consciousness: burden, quality of life and social support.

OBJECTIVE: To evaluate quality of life (QoL) and its predictors, psychological burden and level of perceived social support in caregivers of patients with disorder of consciousness. MATERIALS & METHODS: World Health Organization Quality of Life-Bref (WHOQOL-BREF), State Trait Anxiety Inventory-Y (STAI-Y), Beck Depression Inventory (BDI-II), Prolonged Grief Disorder Questionnaire, Coping Orientations to Problem Experiences, State-Trait Anger Expression Inventory-2 (STAXI-2), and the Medical Outcome Study Social Support Survey (MOS-SSS) were administered. One-sample t-tests were performed to compare WHOQOL-BREF, STAI-Y and STAXI-2 mean scores to the respective normative sample (NS). Pearson correlation was calculated between time dedicated to patient's care, WHOQOL-BREF, BDI-II, STAI-Y and MOS-SSS scores. Hierarchical multiple regression analyses were performed to evaluate which variables have predictive power on QoL. RESULTS: A total of 129 caregivers, 68.2% female, mean age 52.8 years, were enrolled. Three WHOQOL-BREF domains were significantly lower. Anxiety and anger were in line with NS. 28.7% of the sample reported high level of depressive symptoms; 20.9% satisfied the prolonged grief disorder criteria. No differences emerged between caregivers and chronic ill patients' scores at MOS-SSS. STAI-Y, BDI-II and WHOQOL-BREF scores positively correlated. MOS-SSS domains inversely correlate with BDI-II scores. BDI-II results the most relevant predictor of QoL. CONCLUSIONS: Study results provided innovative information about caregivers' poor QoL, difficulties in social support and high levels of burden. Time dedicated to care is not strictly related to burden, while social support perceived is highly associated with caregivers' depressive symptoms that are strong predictor of poor QoL. Supportive intervention able to integrate psychological, social and environmental levels is needed.

Significance of multiple neurophysiological measures in patients with chronic disorders of consciousness.

OBJECTIVE: The aim of this study was to verify the value of multiple neurophysiological tests in classifying disorders of consciousness (DOCs) in patients in a chronic vegetative or minimal consciousness state categorised on the basis of the Coma Recovery Scale (CRS). METHODS: The study included 142 patients, all of whom underwent long (18h) EEG-polygraphic recordings including one night. The EEG was scored using the Synek scale and sleep patterns using an arbitrary scale. Absolute total power and relative EEG power were evaluated in different frequency bands. Multimodal evoked potentials (EPs), including auditory event-related potentials, were also evaluated and scored. RESULTS: The most information came from the combined multimodal EPs and sleep EEG scores. A two-step cluster analysis based on the collected information allowed a satisfactory evaluation of DOC severity. Spectral EEG properties seemed to be significantly related to DOC classes and CRS scores, but did not seem to make any significant additional contribution to DOC classification. CONCLUSIONS: Multiple electrophysiological evaluations based on EEG, sleep polygraphic recordings and multimodal EPs are helpful in assessing DOC severity and residual functioning in patients with chronic DOCs. SIGNIFICANCE: Simple electrophysiological measures that can be easily applied at patients' bedsides can significantly contribute to the recognition of DOC severity in chronic patients surviving a severe brain injury.

The ICF as a framework to collect and interpret data on the extent and variety of disability in neurological conditions.

INTRODUCTION: Neurological conditions are associated with high levels of disability. OBJECTIVES: The aim of this study was to describe, using the International Classification of Functioning, Disability and Health (ICF), the most relevant aspects of disability in patients with neurological conditions. We collated data from previous studies on myasthenia gravis, migraine, Parkinson's disease, multiple sclerosis, traumatic brain injury, stroke, epilepsy, vegetative state and minimally conscious state, and identified as relevant those ICF categories reported by at least 50% of patients in each condition. CONCLUSIONS: Records from 1310 patients were available. A total of 97 ICF categories were reported, and 21 were commonly addressed in more than five conditions. Approximately half of the categories in body functions were related to mental and movement-related functions and more than 25% of the activities-related categories involved activities that require the support from a caregiver. Environmental factors were mostly reported as facilitators. Our data indicate a residual mind-body dichotomy, the relevance of disability not only for the patients but also for their caregivers, and the difficulties in addressing barriers in the environment.

Determinants of disability using count-based approaches to ICF-based definition of neurological disability.

INTRODUCTION: The aim of this study was to explore the most relevant determinants of severe disability in a heterogeneous sample of patients with neurological conditions. OBJECTIVES: We used data from previous studies on patients with myasthenia gravis (MG), migraine, Parkinson's disease (PD), multiple sclerosis, traumatic brain injury (TBI), stroke and epilepsy (349 patients, aged 18-74 years; mean 48.0, SD 11.7). We calculated count-based extension indexes to address severe disability, and hierarchical logistic regression to assess the association between severe disability, sociodemographic and health status information. CONCLUSIONS: Results show that sociodemographic variables played a minor role, while health state information was a stronger determinant of severe disability. Compared to the reference value of TBI patients, those with MG, PD and epilepsy had higher odds to have severe difficulties undertaking daily activities despite the presence of environmental factors. Our results contrast with those of previous studies, mostly derived from general populations, showing the different impact of clinical and sociodemographic variables.

Informal caregivers of patients with disorders of consciousness: experience of ambiguous loss.

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.

Caregiving for patients in vegetative and minimally conscious states: perceived burden as a mediator in caregivers' expression of needs and symptoms of depression and anxiety.

Involvement of family members is crucial to provide daily informal caring to patients in vegetative state and minimally conscious state. Previous studies showed that perceived burden is a risk factor for informal caregivers as it increases psychophysical distress. This research further investigated the relationship between these factors and aimed at providing a model that thoroughly describes this mechanism of functioning. In the frame of a national survey on people with disorders of consciousness, 487 informal caregivers of children and adult patients in vegetative and minimally conscious state were administered measures of depression, anxiety, caregiver needs, and family strain. Regression models proposed by Baron and Kenny and the Sobel test were adopted to investigate the relationship between depressive and anxiety symptoms, perceived burden and needs expressed. Our study shows that the relation between those symptoms and needs is mediated by burden, where higher burden accentuates and lower burden mitigates the needs expressed by caregivers. Our findings demonstrate that psychosocial components of the burden perceived by caregivers of patients with disorders of consciousness play a key role in shaping those caregivers' needs, especially their needs for information and communication. We recommend implementation of comprehensive steps to meet the needs of these caregivers, steps that incorporate improved economic and public health programs, social support, and use of psychological interventions to ameliorate caregivers' psychological distress and decrease their burden.

Do diagnostic differences between vegetative state and minimally conscious state patients correspond to differences in functioning and disability profiles? Results from an observational multi-center study on patients with DOC.

BACKGROUND: Patients in vegetative (VS) and minimally conscious state (MCS) have different degrees of consciousness recovery but both display severe levels of disability. AIM: To describe and compare VS and MCS patients' functioning and disability according to ICF model (International Classification of Functioning, Disability and Health). DESIGN: Observational cross-sectional multi-center study involving sixty-nine Italian centers. SETTING: Patients recruited in post-acute, long-term care facilities and at home in Italy. POPULATION: Adult patients in VS and MCS. METHODS: ICF Functioning profiles were completed and, for each ICF chapter and domain, extension and severity indexes were developed. Indexes have been compared between VS and MCS patients with Mann Whitney U test. Descriptive statistics have been applied to describe the most relevant categories that had a percentage of missing below 25% and that were reported as a problem by at least 50% of patients. RESULTS: A total of 564 patients were enrolled: 396 in VS (mean age 56.8), 168 in MCS (mean age 54.2). Fifty-eight ICF categories were selected: of them, 24 were from Activity and Participation (A&P). Few differences between patients in VS and MCS were reported in Body Functions (BF), mostly referred to mental, sensory and digestive functions; among A&P, differences were found only in learning chapter. For VS patients less environmental barriers were reported than MCS patients. CONCLUSION: Patients in VS and MCS have similar functioning and disability profiles and similar needs thus levels of care and assistance should not be different across the two conditions. CLINICAL REHABILITATION IMPACT: An ICF-based methodology of data collection enables to describe VS and MCS patients' functioning and disability: this is helpful when rehabilitation programs based on the features of single patients with DOC need to be planned.

Physical and mental health, anxiety and depressive symptoms in caregivers of patients in vegetative state and minimally conscious state.

Caregivers of patients in vegetative state and minimally conscious state play a crucial role in the process of taking care and, as previous studies reported, they can suffer of high burden and negative health outcomes. The aim of this national cross-sectional study was to assess whether physical and mental health of caregivers, considering gender differences, is related to the presence of depressive symptoms, anxiety, age and patient's disease duration. Four-hundred and eighteen caregivers, 294 women and 124 men, completed the State Trait Anxiety Inventory-Y, Beck Depression Inventory, second version and Short Form-12. Hierarchical multiple regression analyses were performed to evaluate to which extent depressive and anxiety symptoms predict physical and mental health. Men reported higher levels of mental health state, whereas physical health was not different across gender. High levels of anxiety symptoms were associated to negative mental health outcomes in both genders, whereas depressive symptoms were found to impact on female's mental and physical health only. A comprehensive and cost-effective screening of anxiety and depressive symptoms may help to identify determinants of health worsening in order to plan, when necessary, caregivers' support. KEY PRACTITIONER MESSAGES: Female caregivers of patients in vegetative state and minimally conscious state have poorer levels of mental health, whereas physical health is similar to men's. Anxiety symptoms are related to negative mental health outcomes in both male and female caregivers, whereas depressive symptoms are found to impact on female mental and physical health only. It is essential to consider and assess depressive and anxiety symptoms as they may contribute to caregivers' health worsening. This knowledge can lead to plan more comprehensive and tailored caregivers' supports and a better care for patients.

Burden of caregivers of patients in Vegetative state and minimally conscious state.

OBJECTIVES: To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS). MATERIALS AND METHODS: The Family Strain Questionnaire, Coping Orientations to Problem Experiences, Caregiver Needs Assessment, Short Form-12, Beck Depression Inventory and State-Trait Anxiety Inventory were used. Differences in psychological condition between caregivers of VS and MCS patients, with different disease duration and hosting facility were assessed with Kruskall-Wallis test and factors associated with the overall levels of burden with UNIANOVA. RESULTS: In total, 487 participants were enrolled. Daily hours of care-giving is significantly associated with the overall level of burden perceived by caregivers (F = 4.099; P = 0.018). Strain, needs and frequency of use of coping strategies are substantially similar regardless of the patient's condition and distance from the acute event. Caregivers of post-acute patients reported low scores in mental health (median = 33.8; IQR = 23.1-47.6) and higher state of anxiety (median = 54; IQR = 45-62), whereas caregivers of long-term patients expressed more needs in social involvement (median = 19; IQR = 15-22). CONCLUSIONS: Burden and distress were high for all caregivers of VS and MCS patients. As care-giving is a long-term commitment process, support to the caregiver should be guaranteed throughout the duration of the relative's disease despite the patient's diagnosis or place where the patient is hosted.

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.

Children in vegetative state and minimally conscious state: patients' condition and caregivers' burden.

Caring for children in vegetative state (VS) or minimally conscious state (MCS) challenges parents and impacts on their well-being. This study aims to evaluate caregivers' health condition, coping, anxiety and depression levels, and how these issues relate to children's disability. 35 children with VS and MCS were administered the disability rating scale (DRS) and 35 caregivers completed the Coping Orientations to Problem Experiences, Short Form-12, Beck Depression Inventory, and the Spielberger State-Trait Anxiety Inventory-Y. Children were mainly males (68.6%), hosted at domicile (77.1%), and diagnosed with VS (60%), with anoxic aetiology (45.7%). Caregivers were mainly mothers (85.7%), married (82.9%), and housewives (51.4%); 60% declared financial difficulties, and 82.9% provided full-time assistance. 57.2% reported depressive symptoms, poor mental health, and high level of state and trait anxiety. "Problem-oriented" (P < 0.001) and "emotional-oriented" (P < 0.001), were more adopted than "potentially dysfunctional" ones. DRS scores (mean = 22.0; SD = 1.9) did not significantly correlate to any psychological measure. Rehabilitative programs for children with SV and SMC should also provide interventions on surrounding systems: improving the network of psychological support and social assistance may decrease the burden of caregivers and, in turn, improve caring abilities and children quality of life.

Possible sources of error in the evaluation of psychopathology.

Mental health professionals have been described as biased in the evaluation of mental illness, almost always in favor of illness. It is a professional bias does exist, two factors could be responsible--situational expectancies and/or professional training. Undergraduate students (N = 32) and psychiatric residents (N = 16) listened to four recorded interviews. Two levels of mental illness expectany were obtained by changing the context of the interviews. The Ss rated the interviewees on scales of psychopathology and recorded their impression of the interviewees. Multivariate and univariate analysis of variance and chi 2 tests were used to evaluate the data. Evidence indicated that the biased perception of mental illness occurred for all Ss when mental illness expectancies were high. The data also indicated that residents are not more inclined than students to label people mentally ill.

The effects of expectancy, professional identity, and behavior upon social rejection.

Psychiatric residents (n = 16) and undergraduate students (n = 32) listened to four recorded interviews. Each interview was designed to represent a particular combination of impulse control and distress. Two levels of mental illness expectancy were obtained by changing the context of the interviews. The subjects rated the interviewees on scales of social acceptance and psychopathology. Univariate analyses of variance were used to evaluate the data. The evidence indicated that an individual's behavior must be actually perceived as psychopathological before social rejection will occur.