1. Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic.
- Author
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Giusiano S, Peotta L, Iazzolino B, Mastro E, Arcari M, Palumbo F, Torrieri MC, Bombaci A, Grassano M, Cabras S, Di Pede F, DeMattei F, Matteoni E, Solero L, Daviddi M, Salamone P, Fuda G, Manera U, Canosa A, Chiò A, Calvo A, Moglia C, and Vasta R
- Subjects
- Caregiver Burden, Caregivers, Communicable Disease Control, Cost of Illness, Humans, Pandemics, Quality of Life, SARS-CoV-2, Surveys and Questionnaires, Amyotrophic Lateral Sclerosis epidemiology, COVID-19
- Abstract
Objective: To assess patients Quality of life (QoL) and the burden of their caregivers during Covid-19 pandemic and specifically the impact of two-month lockdown period. Methods : In April 2020, a total of 60 patients and 59 caregivers were administered by phone scales assessing patients' QoL (McGill QoL Questionnaire), general health status (EQ-5D-5L), and caregiver burden (Zarit Burden Interview). The administration was repeated one month after the end of lockdown measures, with the addition of a qualitative questionnaire (COVID-QoL Questionnaire) exploring family reorganization and personal perception of lock down. Results : QoL and perceived health status did not worsen during lockdown, while caregiver burden increased ( p = 0.01). Patient's QoL and caregiver burden were inversely correlated at T1 (ZBI total score mildly correlated with Mc Gill existential subscore, p = 0.02, rho = 0.30 and with Mc Gill total score, p = 0.05, rho = 0.265). No significant correlations were found at T2. According to the COVID-QoL questionnaire, caregivers perceived lower family help compared to patients ( p < 0.001). Conclusions : Restricted measures of lockdown period during COVID-19 pandemic did not result in a significant reduction of QoL in our cohort of ALS patients, while caregiver burden significantly increased. ALS motor impairment may have played a role in the unchanged life conditions of patients. Instead, the restriction of family help for primary caregivers could be responsible of their increased burden, reflecting the importance of a wide social support in the management of this clinical condition.
- Published
- 2022
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