A qualitative study on perceptions of changes reported by caregivers of patients in vegetative state and minimally conscious state: the "time gap experience".

Our purpose was to provide a comprehensive understanding of how women informal caregivers of patients in vegetative state (VS) or minimally conscious state (MCS) describe, represent, and experience changes that occurred in their life after the acute event of their family member.A qualitative study was conducted and fifteen women informal caregivers, mothers, or spouses of patients in VS or MCS were interviewed.Caregivers' narratives revealed (1) important personal and interpersonal changes and (2) difficulties while facing the complex situation and integrating past, present, and future, defined as a "time gap experience." This difficulty is expressed in two ways. First, the reduction of variety of roles into one, caregiver's role. Second, the relationship with the relative is characterised by fluctuation in the relational style between caregiver and relative; it shifts from an adult to adult interaction to an adult to child one. Another fluctuation can be observed in the mixed use of present and past tenses when caregivers speak about their relatives.Caregiving cause pervasive modifications in one's life. Targeted interventions aiming to empower the caregivers, to support them after the acute event in caregiving activities together with patient-focused interventions, and to promote their health should be implemented

A simple O-sulfated thiohydroximate molecule to be the first micromolar range myrosinase inhibitor

International audienc

Neurological diseases of ageing people with Down syndrome: A review from 1960 to 2011

Background: The scientific literature reports that people with Down syndrome (DS) start aging prematurely so that they can be considered old people at the age of 45. Objective: To highlight the evidences of the scientific literature on neurological diseases of ageing people with DS. Methods: Our review was conducted through two electronic databases: PUBMED and ScienceDirect covering the period from 1960 to 2011. Results: In all studies the prevalence of Alzheimer's increases with age: from 30 to 39 years is 10%, from 40 to 49 years is 25%, from 50 to 55 years is 28% and after 60 years is 75%. The average age of onset is 57 years. The Dementia Alzheimer's type in people with DS is characterized by: changes in behaviour and personality, decline in cognitive functions, psychological changes, ataxia, seizures, urinary and fecal incontinence. Alzheimer's and Parkinson's disease with severe dementia occurring in about 15% of patients with DS aged over 40. 26% of adults with DS suffer from epilepsy and the average onset is 37 years. Conclusion: Due to early ageing, Alzheimer's and epilepsy in people with DS appear before and more frequently than in general population. So it is appropriate that we share more awareness about adult DS health needs while they age. It is also necessary to combine the medical evaluation of disorders presenting in people with DS due to ageing with the relevant information about social and personal life, according to a broader biopsychosocial perspective

Use of ICF categories in patients with myasthenia gravis, migraine and Parkinson’s disease: similarities and differences.

Background and Aims: The International Classification of Functioning, Disability and Health (ICF) is intended to describe functioning both at individual and population levels, making it possible to determine similari- ties and differences and, therefore, to plan person-based interventions and policy actions. Aim of this study is to report on similarities and differ- ences in a sample of patients with Myasthenia Gravis (MG), Migraine and Parkinson’s disease (PD). Material and Method: Patients were consecutively enrolled from clini- cal samples, and ICF checklist was applied to identify relevant ICF catego- ries, used in at least 30% of patients. Data were recoded in a dichotomous way to detect the presence/absence of problems. Cross-tabulation with Contingency Coefficient were used to report when ICF categories were specific to one or two diseases or when was common to the three diseases. Result: 300 patients—102 with MG, 102 with Migraine, 96 with PD— were enrolled. 43 ICF categories were selected. Among Body Functions and Structures, some categories described disease-specific issues, such as pain in Migraine, immunological system impairment in MG and involun- tary movements in PD. Similar results were achieved among Activities and Participation: problems with remunerative employment were specific to Migraine patients, drinking to MG and dressing to PD patients. Among Environmental Factors, majority of categories were commonly used, essentially as facilitators, in all the three conditions. Conclusion: Results showed that it is possible to detect differences, mainly at the level of Body Functions and Structures and of Activities and Participation, thus supporting ICF’s utility in planning person-centered interventions. They also show that it is possible to detect similarities, mainly in Environmental Factor, supporting ICF’s utility for health and social policy actions

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.

Patients in vegetative (VS) and minimally conscious state (MCS) have different degrees of consciousness recovery but both display severe levels of disability.To describe and compare VS and MCS patients' functioning and disability according to ICF model (International Classification of Functioning, Disability and Health).Observational cross-sectional multi-center study involving sixty-nine Italian centers.Patients recruited in post-acute, long-term care facilities and at home in Italy.Adult patients in VS and MCS.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.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.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.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