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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." } ], "@type": [ "https://w3id.org/ro/terms/earth-science#Sentence" ], "https://w3id.org/ro/terms/earth-science#normScore": [ { "@value": "9.373097991479003" } ], "https://w3id.org/ro/terms/earth-science#score": [ { "@value": "15.4" } ] }, { "@id": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/#enrichment_service-account-enrichment", "http://schema.org/name": [ { "@value": "service-account-enrichment" } ], "@type": [ "http://xmlns.com/foaf/0.1/Agent" ] }, { "@id": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/", "http://schema.org/about": [ { "@id": "http://eurovoc.europa.eu/4921" } ], "http://schema.org/author": [ { "@id": "https://orcid.org/0000-0002-2736-0052" } ], "http://schema.org/contentSize": [ { "@value": "5787", "@type": "http://www.w3.org/2001/XMLSchema#integer" } ], "http://schema.org/contentUrl": [ { "@value": "https://api.rohub.org/api/ros/976aabb0-7b38-441a-96b3-49844ba773c5/crate/download/" } ], "http://schema.org/creator": [ { "@id": "mailto:service-account-generation-service" } ], "http://schema.org/dateCreated": [ { "@value": "2021-12-10 09:57:08.786289+00:00" } ], "http://schema.org/dateModified": [ { "@value": "2025-03-05 00:46:17.227887+00:00" } ], "http://schema.org/datePublished": [ { "@value": "2021-12-10 09:57:08.786289+00:00" } ], "http://schema.org/description": [ { "@value": "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." } ], "http://schema.org/encodingFormat": [ { "@value": "application/ld+json" } ], "http://schema.org/hasPart": [ { "@id": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b" } ], "http://schema.org/identifier": [ { "@value": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5" } ], "http://schema.org/license": [ { "@id": "https://choosealicense.com/no-permission/" } ], "http://schema.org/name": [ { "@value": "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic" } ], "http://w3id.org/ro-id/rohub/model#creation_mode": [ { "@value": "MANUAL" } ], "@type": [ "http://purl.org/wf4ever/ro#ResearchObject", "http://purl.org/wf4ever/roevo#LiveRO", "http://schema.org/Dataset", 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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." } ] }, { "@id": "mailto:service-account-generation-service", "http://schema.org/name": [ { "@value": "service-account-generation-service" } ], "@type": [ "http://xmlns.com/foaf/0.1/Agent" ] }, { "@id": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b", "http://schema.org/author": [ { "@id": "mailto:service-account-generation-service" } ], "http://schema.org/contentSize": [ { "@value": "419", "@type": "http://www.w3.org/2001/XMLSchema#integer" } ], "http://schema.org/contentUrl": [ { "@value": "https://api.rohub.org/api/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b/download/" } ], "http://schema.org/creator": [ { "@id": "mailto:service-account-generation-service" } ], "http://schema.org/dateCreated": [ { "@value": "2021-12-10 09:57:11.268079+00:00" } ], "http://schema.org/dateModified": [ { "@value": "2021-12-10 09:57:11.269490+00:00" } ], "http://schema.org/description": [ { "@value": "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." } ], "http://schema.org/encodingFormat": [ { "@value": "text/plain" } ], "http://schema.org/license": [ { "@id": "https://choosealicense.com/no-permission/" } ], "http://schema.org/name": [ { "@value": "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic" } ], "http://schema.org/sdDatePublished": [ { "@value": "2021-12-10 09:57:11.268079+00:00" } ], "@type": [ "http://purl.org/wf4ever/wf4ever#Resource", "http://schema.org/MediaObject" ] }, { "@id": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ro-crate-metadata.json", "http://purl.org/dc/terms/conformsTo": [ { "@id": "https://w3id.org/ro/crate/1.1" } ], "http://schema.org/about": [ { "@id": "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/" } ], "@type": 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