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https://w3id.org/ro/terms/earth-science#normScore 4.930006086427268 https://w3id.org/ro-id/8611b3b8-61ce-464d-8b21-01922e2c3ea8 https://w3id.org/ro/terms/earth-science#score 8.1 https://w3id.org/ro-id/8de398b6-2b7c-4418-baf6-0845724bbb97 http://schema.org/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. https://w3id.org/ro-id/8de398b6-2b7c-4418-baf6-0845724bbb97 http://www.w3.org/1999/02/22-rdf-syntax-ns#type https://w3id.org/ro/terms/earth-science#Sentence https://w3id.org/ro-id/8de398b6-2b7c-4418-baf6-0845724bbb97 https://w3id.org/ro/terms/earth-science#normScore 9.373097991479003 https://w3id.org/ro-id/8de398b6-2b7c-4418-baf6-0845724bbb97 https://w3id.org/ro/terms/earth-science#score 15.4 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/#enrichment_service-account-enrichment http://schema.org/name service-account-enrichment https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/#enrichment_service-account-enrichment http://www.w3.org/1999/02/22-rdf-syntax-ns#type http://xmlns.com/foaf/0.1/Agent https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/about http://eurovoc.europa.eu/4921 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/author https://orcid.org/0000-0002-2736-0052 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/contentSize 5787 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/contentUrl https://api.rohub.org/api/ros/976aabb0-7b38-441a-96b3-49844ba773c5/crate/download/ https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/creator mailto:service-account-generation-service https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/dateCreated 2021-12-10 09:57:08.786289+00:00 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/dateModified 2025-03-05 00:46:17.227887+00:00 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/datePublished 2021-12-10 09:57:08.786289+00:00 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/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. https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/encodingFormat application/ld+json https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/hasPart https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/identifier https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/license https://choosealicense.com/no-permission/ https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ http://schema.org/name Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic 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"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. https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/author mailto:service-account-generation-service https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/contentSize 419 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/contentUrl https://api.rohub.org/api/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b/download/ https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/creator mailto:service-account-generation-service https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/dateCreated 2021-12-10 09:57:11.268079+00:00 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/dateModified 2021-12-10 09:57:11.269490+00:00 https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/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. https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/encodingFormat text/plain https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/license https://choosealicense.com/no-permission/ https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/name Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b http://schema.org/sdDatePublished 2021-12-10 09:57:11.268079+00:00 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