@prefix this: . @prefix sub: . @prefix np: . @prefix dct: . @prefix pav: . @prefix rdf: . @prefix owl: . @prefix rdfg: . @prefix dce: . @prefix xsd: . @prefix rdfs: . @prefix prov: . @prefix npx: . sub:Head { this: a np:Nanopublication; np:hasAssertion sub:assertion; np:hasProvenance sub:provenance; np:hasPublicationInfo sub:pubinfo . } sub:assertion { a ; ""; "Biology" . a ; "federica.foglini@ismar.cnr.it"; "Federica Foglini" . a ; "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."; "55.873402312842366"; "91.8" . a ; "caregiver"; "5.911330049261084"; "4.8" . a ; "burden"; "18.96551724137931"; "15.4" . a ; "patient"; "15.394088669950738"; "12.5" . a ; "lateral Scher"; "4.583602324080052"; "7.1" . a ; "covid-QoL questionnaire"; "4.777275661717237"; "7.4" . a ; "Laura"; "6.686046511627906"; "6.9" . a ; "quality of life"; "8.497536945812808"; "6.9" . a ; "lockdown"; "6.650246305418719"; "5.4" . a ; "patients quality of life"; "10.974822466107165"; "17.0" . a ; "Torrieri"; "6.395348837209302"; "6.6" . a ; "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."; "20.9373097991479"; "34.4" . a ; "life sciences"; "86.23743515548426"; "0.9878090620040894" . a ; "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic."; "8.88618381010347"; "14.6" . a ; "burden"; "13.75968992248062"; "14.2" . a ; "Giusiano"; "6.492248062015504"; "6.7" . a ; "patient"; "9.496124031007753"; "9.8" . a ; "Matteoni"; "6.492248062015504"; "6.7" . a ; "Palumbo"; "6.87984496124031"; "7.1" . a ; "Mastro"; "7.170542635658914"; "7.4" . a ; "Medical staff"; "Health/Medical profession/Medical staff" . a ; "caregiver burden"; "3.55067785668173"; "5.5" . a ; "In Apr-2020" . a ; "Music"; "Arts, culture and entertainment/Arts and entertainment/Music" . a ; "Health"; "Health" . a ; "health status"; "4.712717882504841"; "7.3" . a ; "geology"; "100.0"; "1.4761965870857239" . a ; "medicine"; "51.09717868338558"; "16.3" . a ; "quality of life"; "0.45190445448676564"; "0.7" . a ; "Musical instrument"; "Arts, culture and entertainment/Arts and entertainment/Music/Musical instrument" . a ; "Lateral Scher."; "4.930006086427268"; "8.1" . a ; "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."; "9.373097991479003"; "15.4" . a ; "service-account-enrichment" . a , , , , ; ; ; "5787"^^xsd:integer; "https://api.rohub.org/api/ros/976aabb0-7b38-441a-96b3-49844ba773c5/crate/download/"; ; "2021-12-10 09:57:08.786289+00:00"; "2025-03-05 00:46:17.227887+00:00"; "2021-12-10 09:57:08.786289+00:00"; "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."; "application/ld+json"; ; "https://w3id.org/ro-id/976aabb0-7b38-441a-96b3-49844ba773c5"; ; "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic"; "MANUAL"; "https://w3id.org/ro-id/6d3f4b98-f443-4ac9-a315-f507af7fef8f", "https://w3id.org/ro-id/d6d92bba-7253-480d-8865-9febf47dd360"; "https://w3id.org/ro-id/03d607ad-a893-4182-803e-267d1c4055f9", "https://w3id.org/ro-id/064f631e-148d-4b96-9f7e-6c2a443fb3e6", "https://w3id.org/ro-id/0c2c448b-6c1e-4389-ba4e-ef1c09698d5c", "https://w3id.org/ro-id/2abfa715-c6d2-4c1b-a5b7-984f4808fa6b", "https://w3id.org/ro-id/2b9531f4-4665-4788-8d56-905be134505b", "https://w3id.org/ro-id/b14f5c48-ce65-4004-9b28-a05867c2ce69", "https://w3id.org/ro-id/bd878af8-e610-4e24-91bd-fffad7a49745", "https://w3id.org/ro-id/c112f497-0e9a-4b36-9bfd-a5eba7a65ffd", "https://w3id.org/ro-id/d5a486df-f0c9-403b-b432-eaa4f07ec76e", "https://w3id.org/ro-id/e86d68c5-9de1-478f-a71b-12a4e77e56d7", "https://w3id.org/ro-id/e90a81b0-d1ba-4c7e-ab47-e1f0becfc3f0"; "https://w3id.org/ro-id/6a181bdd-a41d-4607-855b-f66cac92d918", "https://w3id.org/ro-id/f90f8d44-ec37-41a7-a333-98460c6f3749"; "https://w3id.org/ro-id/5706c642-6990-423e-b4e8-48b09f23c877", "https://w3id.org/ro-id/5f9352ea-a53e-49b1-9e24-29c130e26058", "https://w3id.org/ro-id/61fb2862-f952-42cd-82b8-54b6ee5c405f", "https://w3id.org/ro-id/6f6d5a05-2473-4c4e-a8f1-5ba182196f62", "https://w3id.org/ro-id/b6e8f5b0-bc52-45f1-b610-3b4e415c1de6", "https://w3id.org/ro-id/e37bebbc-22b8-4c1f-9bda-92a7b7f8d082"; "https://w3id.org/ro-id/228129df-3a19-4887-ac5e-d2171766317c", "https://w3id.org/ro-id/36596768-2dbe-48ce-b242-07fa1ed16420", "https://w3id.org/ro-id/401897c0-b558-46c4-8f86-a12a9c6832e6", "https://w3id.org/ro-id/4073766e-d49e-4ea8-9b80-ba1592abf1f5", "https://w3id.org/ro-id/491e5b6e-6627-443c-9dac-7d9e883f6d8a", "https://w3id.org/ro-id/4e0274ed-b67e-43cf-8dbd-c9178035dc94", "https://w3id.org/ro-id/528973ff-cba4-4ad9-a50b-8e40d7160856", "https://w3id.org/ro-id/54ddf13c-be80-4e80-9659-a5bfcb6e1388", "https://w3id.org/ro-id/9c7d18bf-2ee7-4d88-9850-bfa743d8b18d", "https://w3id.org/ro-id/b5ff016e-41d6-4107-aad4-7e37669e4240", "https://w3id.org/ro-id/cb38c001-1cdd-4371-a83b-f8db95d813f2", "https://w3id.org/ro-id/f041449e-cee6-4256-9ab4-c08638710c11", "https://w3id.org/ro-id/f5c58b71-5861-43c4-aa29-a691a79c71b5"; "https://w3id.org/ro-id/3c297c11-9d1b-4d79-be6a-669b6bcd7b10", "https://w3id.org/ro-id/a383a2d6-5c86-4908-8281-e05e3d8dc9cf", "https://w3id.org/ro-id/a4ce82da-af3d-467d-b069-3bedad6a70da", "https://w3id.org/ro-id/cbe23dbd-61ca-4f1f-b0a2-3a81a0fd7778"; "https://w3id.org/ro-id/12946d2a-d04c-4174-ab10-93aa7ba6fa75", "https://w3id.org/ro-id/1eb27e46-99fb-4ec4-b4d6-d3e577cd5ee2", "https://w3id.org/ro-id/2cebcd12-f022-4bbd-b94e-ac27e6a92a11", "https://w3id.org/ro-id/59839531-a007-4a10-97ea-6b380ba0378f", "https://w3id.org/ro-id/67d5d9c6-552e-43ae-9edd-e982277aabc3", "https://w3id.org/ro-id/6dcc0d8b-390f-4ac2-81f0-31a9eb40dd60", "https://w3id.org/ro-id/a45e45d5-c012-4e9b-ab2f-7438c8ca8573", "https://w3id.org/ro-id/cce7f9b5-40df-4186-8eb8-0c0d59e765b6", "https://w3id.org/ro-id/d097b90d-0cb9-497e-ba91-6c51dbdfd038", "https://w3id.org/ro-id/dc791ff0-52f3-4f53-9f18-3d8a289c449d"; "https://w3id.org/ro-id/01068300-9d4b-4ed6-a3d9-aae5f9136d2f", "https://w3id.org/ro-id/38960fff-d8a0-4219-8142-ac6b3151cf05", "https://w3id.org/ro-id/3dcfab9b-0a83-4596-860e-cbebae31bbfb", "https://w3id.org/ro-id/8611b3b8-61ce-464d-8b21-01922e2c3ea8", "https://w3id.org/ro-id/8de398b6-2b7c-4418-baf6-0845724bbb97"; "https://w3id.org/ro-id/5e1ea08c-4799-4d97-8c22-d1737f2db8a2"; "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." . a , ; ; "419"^^xsd:integer; "https://api.rohub.org/api/resources/e8d6574a-b552-475b-8d7f-04a8dcf5b90b/download/"; ; "2021-12-10 09:57:11.268079+00:00"; "2021-12-10 09:57:11.269490+00:00"; "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."; "text/plain"; ; "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic"; "2021-12-10 09:57:11.268079+00:00" . a ; dct:conformsTo ; . a ; "Lou Gehrig's disease"; "9.496124031007753"; "9.8" . a ; "life sciences (general)"; "86.23743515548426"; "0.9878090620040894" . a ; "ALS patient"; "7.4241446094254355"; "11.5" . a ; "space sciences"; "13.76256484451574"; "0.15764367580413818" . a ; "questionnaire"; "4.1871921182266005"; "3.4" . a ; "health"; "6.007751937984496"; "6.2" . a ; "Medical profession"; "Health/Medical profession" . a ; "Lou Gehrig's disease"; "12.68472906403941"; "10.3" . a ; "total"; "4.064039408866995"; "3.3" . a ; "status"; "5.910852713178294"; "6.1" . a ; "space sciences (general)"; "13.76256484451574"; "0.15764367580413818" . a ; "amyotrophic lateral sclerosis caregiver burden"; "8.005164622336991"; "12.4" . a ; "sclerosis caregiver burden"; "44.480309877340225"; "68.9" . a ; "sclerosis"; "7.0197044334975365"; "5.7" . a ; "linguistics"; "48.90282131661442"; "15.6" . a ; "patients' quality of life"; "11.039380245319562"; "17.1" . a ; "Epidemic"; "Health/Diseases and conditions/Communicable disease/Epidemic" . a ; "health"; "8.374384236453201"; "6.8" . a ; "status"; "8.251231527093596"; "6.7" . a ; "quality of life"; "6.2984496124031"; "6.5" . a ; "QoL"; "8.91472868217054"; "9.2" . a ; "earth sciences"; "100.0"; "1.4761965870857239" . a ; "service-account-generation-service" . } sub:provenance { sub:assertion prov:wasDerivedFrom . } sub:pubinfo { this: a npx:RoCrateNanopub; dct:created "2026-03-03T16:44:22.880+01:00"^^xsd:dateTime; dct:creator ; npx:introduces ; rdfs:label "Amyotrophic lateral sclerosis caregiver burden and patients' quality of life during COVID-19 pandemic" . sub:sig npx:hasAlgorithm "RSA"; npx:hasPublicKey "MIIBIjANBgkqhkiG9w0BAQEFAAOCAQ8AMIIBCgKCAQEAxszSDYX5tuCSkP7UiCtftYPFNQVTjgNu0I5fwdML2DLRDlp0xzmsQXRk8oHuvwGvG1aMjj6cpUqO+0rz2Sg/wvHOgUpkRH8VJXvmlkhafMLCMtUtk5JIx7e+fkzCby+fnmD7kMkGLrT+OaExWwEDmNlCAt0TPKcHSdwsjso2isXjtAsGevyCMke8ufnFYpjs746JES1eNzVnHnn2Kp/lqcm60GM+J8dLgRZp7fX0anW098xhKym6+xXFzqeju0vYRIHBPerv+r7skWxwk+a7Sd8msqVeYEv6NTqnyWvyWb6Yh8cvj04N6qm/T6C5FUPLQhzSaQgMVMU6yLqjPuu9DwIDAQAB"; npx:hasSignature "o3mPwB6ayHbqDdieDh4itA3WbeuZ57iPGLjN/ojP3vNFj4+G4SApuhEpWm6A1vT6fMkIgKVA+ZEpV+6c2BQieaHl/rSpIFCK6yAnUM+2Q/06ufNHU++r7Qe19yq9WKwZ0qfT2mi1sPNmCfuCIjUllMyc20yTGxe9DPNkKYhF+0O8ZMgXmkqtmxwk6W2dXUu5sqaTaTjK47H1otOB4bJAz77kRHOpc2efb7p7u7/xqMyUQypy2P/bp1t9HxP/uX3sFFigdocycW948ktfPj6gVEqPJK+yZbQfMjIbpFuHFl8eFwUCcJsOiO/lXGNjV8RI+BLNQa0wh+nYfXfGm5lbXw=="; npx:hasSignatureTarget this:; npx:signedBy . }