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culture and entertainment/Arts and entertainment/Music/Musical instrument" } ] }, { "@id" : "https://w3id.org/ro-id/8611b3b8-61ce-464d-8b21-01922e2c3ea8", "@type" : [ "https://w3id.org/ro/terms/earth-science#Sentence" ], "http://schema.org/name" : [ { "@value" : "Lateral Scher." } ], "https://w3id.org/ro/terms/earth-science#normScore" : [ { "@value" : "4.930006086427268" } ], "https://w3id.org/ro/terms/earth-science#score" : [ { "@value" : "8.1" } ] }, { "@id" : "https://w3id.org/ro-id/8de398b6-2b7c-4418-baf6-0845724bbb97", "@type" : [ "https://w3id.org/ro/terms/earth-science#Sentence" ], "http://schema.org/name" : [ { "@value" : "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/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/", "@type" : [ "http://purl.org/wf4ever/ro#ResearchObject", "http://purl.org/wf4ever/roevo#LiveRO", "http://schema.org/Dataset", "http://w3id.org/ro/earth-science#BibliographyResearchObject", "https://w3id.org/ro/terms/earth-science#BibliographyResearchObject" ], "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" : [ { "@type" : "http://www.w3.org/2001/XMLSchema#integer", "@value" : "5787" } ], "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" } ], "https://w3id.org/contentdesc#Domain" : [ { "@value" : 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Dec 10 ,2021. https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5." } ] }, { "@id" : "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/#enrichment_service-account-enrichment", "@type" : [ "http://xmlns.com/foaf/0.1/Agent" ], "http://schema.org/name" : [ { "@value" : "service-account-enrichment" } ] }, { "@id" : "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b", "@type" : [ "http://purl.org/wf4ever/wf4ever#Resource", "http://schema.org/MediaObject" ], "http://schema.org/author" : [ { "@id" : "mailto:service-account-generation-service" } ], "http://schema.org/contentSize" : [ { "@type" : "http://www.w3.org/2001/XMLSchema#integer", "@value" : "419" } ], "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" } ] }, { "@id" : "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5/ro-crate-metadata.json", "@type" : [ "http://schema.org/CreativeWork" ], "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/" } ] }, { "@id" : 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