ABSTRACT
Amyotrophic Lateral Sclerosis (ALS) is a rare neurogenerative disorder whose median survival ranges from 2 to 4 years after symptomatic onset. Therefore, the global Quality of Life (QoL) assessment in these patients should be carefully evaluated to guarantee an adequate care level, particularly during the COVID-19 pandemic period, given the increased social isolation and the pressure on healthcare services. Caregiving has been recognized as an important source of physical and psychological burden, with a possible QoL impairment. The purpose of this study was to evaluate the QoL of ALS patients and the burden of their caregivers across Sardinia, Italy. The ALS Specific QoL Instrument-Short Form (ALSSQOL-SF) and the Zarit Burden Inventory (ZBI) tools were used to assess patient's QoL and the burden on their caregivers, respectively. The questionnaires were supplemented with items specific for the COVID-19 period. Sixty-six family units of patients with advanced ALS were interviewed between June and August 2021 across Sardinia. Patients' psychological and social well-being were found to significantly affect the patients' QoL, regardless of their physical condition. In addition, the caregiver burden resulted as being inversely proportional to the patient's perceived QoL. Lack of adequate psychological support was reported among the caregivers during the emergency period. Providing adequate psychological and social support might be useful to improve QoL in middle and late stages of ALS patients and to decrease caregivers' perceived home care burden.
ABSTRACT
The aim of the study is to evaluate the preparedness of retirement and nursing homes in the city of Sassari at the end of the first wave of the severe acute respiratory syndrome coronavirus 2 epidemic, first by investigating the risk perception of epidemic outbreaks by the facility managers and subsequently by carrying out a field assessment of these facilities. To perform the field assessment, a checklist developed by the CDC (Infection Prevention and Control Assessment Tool for Nursing Homes Preparing for COVID-19) and adapted to the Italian context was used. Fourteen facilities took part in the survey (87.5%). The application of good practices for each survey area was expressed as a percentage with the following median values: restriction policies (87.5%), staff training (53.8%), resident training (67.6%), availability of personal protective equipment (41.7%), infection control practices (73.5%) and communication (80%). Among the facilities, considerable variability was observed in these evaluation fields: only the restriction policies and communication activities were applied uniformly. A discrepancy was found between perceived risk and real danger in the facilities, requiring targeted communication actions. At present, it is necessary to promote a new approach based on the prediction of critical events, thereby providing the means to effectively address them.