Care pathways models and clinical outcomes in Disorders of consciousness.

OBJECTIVE: Patients with Disorders of consciousness, are persons with extremely low functioning levels and represent a challenge for health care systems due to their high needs of facilitating environmental factors. Despite a common Italian health care pathway for these patients, no studies have analyzed information on how each region have implemented it in its welfare system correlating data with patients' clinical outcomes. MATERIALS AND METHODS: A multicenter observational pilot study was realized. Clinicians collected data on the care pathways of patients with Disorder of consciousness by asking 90 patients' caregivers to complete an ad hoc questionnaire through a structured phone interview. Questionnaire consisted of three sections: sociodemographic data, description of the care pathway done by the patient, and caregiver evaluation of health services and information received. RESULTS: Seventy-three patients were analyzed. Length of hospital stay was different across the health care models and it was associated with improvement in clinical diagnosis. In long-term care units, the diagnosis at admission and the number of caregivers available for each patient (median value = 3) showed an indirect relationship with worsening probability in clinical outcome. Caregivers reported that communication with professionals (42%) and the answer to the need of information were the most critical points in the acute phase, whereas presence of Non-Governmental Organizations (25%) and availability of psychologists for caregivers (21%) were often missing during long-term care. The 65% of caregivers reported they did not know the UN Convention on the Rights of Persons with Disabilities. CONCLUSION: This study highlights relevant differences in analyzed models, despite a recommended national pathway of care. Future public health considerations and actions are needed to guarantee equity and standardization of the care process in all European countries.

Family caregivers' opinions about interaction with the environment in consciousness disorders.

OBJECTIVES: To assess family caregivers' opinions about level of interaction with the environment in their relatives with disorders of consciousness (DOCs) and to explore psychological features of caregivers whose opinions diverge from clinicians' diagnosis. METHOD: Forty-five family caregivers of 38 DOC inpatients without communication abilities answered 2 questions assessing their opinion about level of interaction with the environment in their relatives. Self-report questionnaires were used to evaluate caregivers' depression, anxiety, psychophysiological disturbances, prolonged grief disorder, coping strategies, quality of perceived needs and social support. RESULTS: Fifteen caregivers (5 relatives of patients in vegetative state and 10 of patients in minimally conscious state) considered their relatives able to communicate, in contrast with clinical diagnosis. These caregivers had significantly higher depressive symptoms, and higher worries about possible death of their relatives with respect to the remaining caregivers. CONCLUSIONS: Caregivers of DOC patients detected some interaction with the environment in their relatives more often than care professionals. This is likely related to caregivers' beliefs and expectations, but is also based on observations closer and longer than those possible for physicians. These considerations are important to build a therapeutic alliance with caregivers and to involve them in the diagnostic process and rehabilitative program. (PsycINFO Database Record

A multicentre study of intentional behavioural responses measured using the Coma Recovery Scale-Revised in patients with minimally conscious state.

OBJECTIVE: To investigate which conscious behaviour is most frequently detected using the Coma Recovery Scale-Revised in patients with minimally conscious state. DESIGN: Multicentre, cross-sectional study. SETTING: One intensive care unit, 8 post-acute rehabilitation centres and 2 long-term facilities. SUBJECTS: Fifty-two patients with established diagnosis of minimally conscious state of different aetiology. MAIN MEASURES: All patients were assessed by the Coma Recovery Scale-Revised. RESULTS: In most patients (34/52) non-reflexive responses were identified by two or more subscales of the Coma Recovery Scale-Revised, whereas in 14 patients only the visual subscale could identify cortically-mediated behaviours, and in the remaining 4 patients only the motor subscale did so.The clinical signs of intentional behaviour were most often detected by the visual subscale (43/52 patients) and by the motor subscale (31/52), and least frequently by the oromotor/verbal subscale (3/52) of the Coma Recovery Scale-Revised. This clinical pattern was observed independently from time post-onset and aetiology. CONCLUSIONS: Non-reflexive visual behaviour, identified by the visual subscale of Coma Recovery Scale-Revised, is the most frequently detected intentional sign consistent with the diagnosis of minimally conscious state, independently from aetiology and time post-onset.

A study of the psychological distress in family caregivers of patients with prolonged disorders of consciousness during in-hospital rehabilitation.

OBJECTIVES: To study psychological distress in a sample of caregivers of patients affected by prolonged disorders of consciousness during hospital stay in the Neurorehabilitation Unit. MATERIALS AND METHODS: Twenty-four caregivers of 22 patients affected by prolonged disorders of consciousness admitted to postacute rehabilitation center, completed self-reported questionnaires for assessment of depressive symptoms, state and trait anxiety, psychophysiological disturbances, prolonged grief disorder, psychological coping strategies, quality of perceived needs, perceived social support, and caregiver burden; at admission, and after four and eight months. RESULTS: At admission depressive symptoms were found in 20/24 caregivers, high levels of anxiety in 16, and relevant psychophysiological disturbances in 10 participants; eight caregivers (32%) met criteria for prolonged grief disorder. The scores on questionnaires did not differ as a function of relatives' diagnosis (vegetative state vs. minimally conscious state). The longitudinal study (n = 18) showed a progressive and statistically significant increase of "emotional burden" during the hospital stay, whereas the remaining variables did not change significantly. CONCLUSIONS: Data confirmed the presence of severe psychological problems in caregivers of patients with prolonged disorders of consciousness. The levels of psychological distress tend to be constant over time, while the emotional burden increases.