Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic
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name: Giusiano, S; Laura, P; 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; Chio, A; Calvo, A; Moglia, C; Vasta, R. Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic.
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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.
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name: 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.
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Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic
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author: Federica Foglini
content size: 5787
date created: 2021-12-10 09:57:08.786289+00:00
date modified: 2025-03-05 00:46:17.227887+00:00
date published: 2021-12-10 09:57:08.786289+00:00
description: 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.
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cite-as: Foglini, Federica. "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic." ROHub. Dec 10 ,2021. https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5.

Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic
content size: 419
date created: 2021-12-10 09:57:11.268079+00:00
date modified: 2021-12-10 09:57:11.269490+00:00
description: 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.
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