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BACKGROUND AND PURPOSE The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of(More)
BACKGROUND Preliminary evidence suggests that palliative care may be useful for people with severe multiple sclerosis (MS). The aim of this study is to determine the effectiveness of a home-based palliative approach (HPA) for people with severe MS and their carers. METHODS/DESIGN This is a single-blind randomized controlled trial with a nested qualitative(More)
The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient’s quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens(More)
BACKGROUND This study analysed the impact on palliative care outcomes of a new specialist palliative care service for patients severely affected by amyotrophic lateral sclerosis (ALS/MND), multiple sclerosis, Parkinson's disease and related disorders (multiple system atrophy progressive supranuclear palsy, MSA-PSP). METHODS The design followed the Medical(More)
In Italy 10-30% of patients who die with amyotrophic lateral sclerosis are invasively ventilated. It is difficult to predict when patients will die and when a specialist palliative care service may effectively be involved. Nineteen semi-structured interviews with informal family carers who looked after these patients who had died in last 10 years were(More)
Individualized quality of life (QoL) measures differ from traditional inventories in that QoL domains/weights are not predetermined, but identified by the individual. We assessed practicability of the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW) interview in severely affected multiple sclerosis (MS) patients; the key QoL(More)
PURPOSE To estimate the prevalence of self-reported sleep disorders (SD), to examine associations among demographic characteristics and familiar factors with SD, between SD and daytime sleep-related disorders (DD) and between evening habits and SD. METHODS An anonymous questionnaire was proposed to 1563 students (aged 14-21 years, mean age 16.5 +/- 1.5;(More)
The article proposes a critical reflection on issues that appeal to the conscience clause as part of end of life care can produce and what can guarantee freedom of conscience, self-determination of those involved and respect for the dignity of the sick person. After a philosophical and normative analysis, the article is organized on the basis of two(More)
BACKGROUND Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. OBJECTIVE To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. METHODS Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a(More)
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