{"?xml":{"@version":"1.0"},"edm:RDF":{"@xmlns:dc":"http://purl.org/dc/elements/1.1/","@xmlns:edm":"http://www.europeana.eu/schemas/edm/","@xmlns:wgs84_pos":"http://www.w3.org/2003/01/geo/wgs84_pos","@xmlns:foaf":"http://xmlns.com/foaf/0.1/","@xmlns:rdaGr2":"http://rdvocab.info/ElementsGr2","@xmlns:oai":"http://www.openarchives.org/OAI/2.0/","@xmlns:owl":"http://www.w3.org/2002/07/owl#","@xmlns:rdf":"http://www.w3.org/1999/02/22-rdf-syntax-ns#","@xmlns:ore":"http://www.openarchives.org/ore/terms/","@xmlns:skos":"http://www.w3.org/2004/02/skos/core#","@xmlns:dcterms":"http://purl.org/dc/terms/","edm:WebResource":[{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-0GH62PMN/4e8f0c05-d07b-47ca-a2bb-0f8268eba0eb/PDF","dcterms:extent":"423 KB"},{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-0GH62PMN/c1927ea3-0e03-4463-8c35-27cd1922e495/TEXT","dcterms:extent":"40 KB"}],"edm:TimeSpan":{"@rdf:about":"2008-2025","edm:begin":{"@xml:lang":"en","#text":"2008"},"edm:end":{"@xml:lang":"en","#text":"2025"}},"edm:ProvidedCHO":{"@rdf:about":"URN:NBN:SI:doc-0GH62PMN","dcterms:isPartOf":[{"@rdf:resource":"https://www.dlib.si/details/URN:NBN:SI:spr-FQ9JBKO1"},{"@xml:lang":"sl","#text":"Rehabilitacija (Ljubljana)"}],"dcterms:issued":"2016","dc:creator":["Jedlička, Željko","Pražnikar, Aleš"],"dc:format":[{"@xml:lang":"sl","#text":"številka:1"},{"@xml:lang":"sl","#text":"letnik:15"},{"@xml:lang":"sl","#text":"str. 40-48"}],"dc:identifier":["ISSN:1580-9315","COBISSID:2174825","URN:URN:NBN:SI:doc-0GH62PMN"],"dc:language":"sl","dc:publisher":{"@xml:lang":"sl","#text":"Univerzitetni rehabilitacijski inštitut Slovenije - Soča"},"dc:subject":[{"@xml:lang":"sl","#text":"amiotrofična lateralna skleroza"},{"@xml:lang":"en","#text":"Amyotrophic lateral sclerosis"},{"@xml:lang":"sl","#text":"bolniki"},{"@xml:lang":"en","#text":"medical aids"},{"@xml:lang":"sl","#text":"nacionalna združenja"},{"@xml:lang":"en","#text":"national associations"},{"@xml:lang":"en","#text":"Patients"},{"@xml:lang":"sl","#text":"pripomočki"}],"dcterms:temporal":{"@rdf:resource":"2008-2025"},"dc:title":{"@xml:lang":"sl","#text":"Primerjava dostopa do rehabilitacije za bolnike z amiotrofično lateralno sklerozo v različnih državah| Comparison of access to rehabilitation services for patients with amyotrophic lateral sclerosis in different countries|"},"dc:description":[{"@xml:lang":"sl","#text":"Background: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with predominant impairment of motor neurons. Patients with ALS involved in the multidisciplinary care have a better survival and report higher quality of life. Patient's close ones and patients' organisations are an important part of the multidisciplinary health care of the patients with ALS. As the disease progresses, the patient needs more and more walking and mobility aids, aids for daily living, communication aids, and breathing and respiratory aids. We wanted to find out how available is the access to a multidisciplinary team, medical aids, and social/financial assistance for patients with ALS in different countries. Methods: We designed a questionnaire with questions on the accessibility to multidisciplinary team, medical aids and social/financial compensations. The questionnaire was sent to associations of patients with ALS through the International Alliance for ALS/ BMN. Results: Completed questionnaires were received from 8 of 44 (18 %) of national associations of patients with ALS (from Germany, Australia, England, Ireland, Spain, Turkey, USA, Israel and Slovenia). All the completed questionnaires were included in further analysis. Differences in access to multidisciplinary team and medical aids were found to be small. Patients with ALS have access to the rehabilitation team in all the studied countries, but the teams are not complete everywhere and/or access might be limited. Different medical aids for patients with ALS do not affect the functioning and quality of life of patients equally. We noted the discrepancy between the patients' ratings of usefulness and satisfaction with various medical aids on one hand and access to them on the other hand. The respondents reported the long time to delivery of medical aids as a significant problem. Major differences between countries exist in the payment of the multidisciplinary team, medical aids and especially the social support for patients with ALS. Conclusions: Patient advocacy organisations should devote their attention to achieving and balancing the social and economic rights for patients with ALS, supporting access to proper medical aids, reducing the time of delivery of medical aids and supporting access to the rehabilitation programs and a standardized multidisciplinary treatment. These endeavours are in line with the international clinical guidelines of care for patients with ALS. The desired changes are important, yet neither complex nor difficult to achieve"},{"@xml:lang":"sl","#text":"Izhodišča: Amiotrofična lateralna skleroza (ALS) je napredujoča nevrodegenerativna bolezen s prevladujočo okvaro motoričnih nevronov. Dokazano je, da bolniki z ALS, ki so vključeni v multidisciplinarno oskrbo, živijo dlje in bolj kvalitetno. Pomemben del timske zdravstvene oskrbe prevzamejo tudi bolnikovi bližnji in organizacije bolnikov z ALS. Bolnik z napredovanjem bolezni potrebuje vse več pripomočkov za gibanje, vsakodnevne dejavnosti, komunikacijo in podporo dihanja. Z raziskavo smo želeli ugotoviti, kakšna in kolikšna je dostopnost do multidisciplinarnega tima, medicinskih pripomočkov in socialne oziroma finančne pomoči v različnih državah za bolnike z ALS. Metode: Oblikovali smo vprašalnik o dostopnosti do multidisciplinarnega tima, medicinsko tehničnih pripomočkov in socialno- finančnega nadomestila. Vprašalnik smo posredovali združenjem bolnikov z ALS držav, ki so članice Mednarodnega združenja za ALS (International Alliance for ALS/BMN). Rezultati: Izpolnjene vprašalnike je vrnilo osem od 44 (18 %) nacionalnih združenj bolnikov z ALS (iz Nemčije, Avstralije, Anglije, Irske, Španije, Turčije, ZDA, Izraela in Slovenije).Vse izpolnjene vprašalnike smo vključili v nadaljnjo analizo. Razlike v dostopnosti do multidisciplinarnega tima in medicinskih pripomočkov so med vključenimi državami majhne. Dostop do tima je mogoč v vseh državah, vendar pa timi v različnih državah niso povsod popolni. Različni MP za bolnike z ALS ne vplivajo enako na funkcijo in kakovost življenja bolnikov. Ugotovili smo razkorak med ocenami bolnikov o uporabnosti in zadovoljstvu s posameznimi medicinskimi pripomočki (MP) ter dostopnostjo do njih. Združenja bolnikov so poročala, da je čas dobave MP predolg in to izpostavila kot pomemben problem. Večje razlike med državami se kažejo v plačilu storitev tima, MP in še posebej pri socialni podpori bolnikov z ALS. Zaključki: Urejanje in izenačevanje socialnih pravic za bolnike z ALS med raličnimi državami, urejanje pravic do MP, skrajševanja časa dobave MP ter skrajševanje čakalnih vrst za programe rehabilitacije so dejavnosti, ki bi jim morali posvetiti več pozornosti, če bi želeli slediti mednarodnim kliničnim smernicam skrbi za bolnike z ALS in doseči standardizirano multidisciplinarno obravnavo. Te spremembe so pomembne, hkrati pa niso zapletene ali zahtevne"}],"edm:type":"TEXT","dc:type":[{"@xml:lang":"sl","#text":"znanstveno časopisje"},{"@xml:lang":"en","#text":"journals"},{"@rdf:resource":"http://www.wikidata.org/entity/Q361785"}]},"ore:Aggregation":{"@rdf:about":"http://www.dlib.si/?URN=URN:NBN:SI:doc-0GH62PMN","edm:aggregatedCHO":{"@rdf:resource":"URN:NBN:SI:doc-0GH62PMN"},"edm:isShownBy":{"@rdf:resource":"http://www.dlib.si/stream/URN:NBN:SI:doc-0GH62PMN/4e8f0c05-d07b-47ca-a2bb-0f8268eba0eb/PDF"},"edm:rights":{"@rdf:resource":"http://rightsstatements.org/vocab/InC/1.0/"},"edm:provider":"Slovenian National E-content Aggregator","edm:intermediateProvider":{"@xml:lang":"en","#text":"National and University Library of Slovenia"},"edm:dataProvider":{"@xml:lang":"sl","#text":"Univerzitetni rehabilitacijski inštitut RS – Soča"},"edm:object":{"@rdf:resource":"http://www.dlib.si/streamdb/URN:NBN:SI:doc-0GH62PMN/maxi/edm"},"edm:isShownAt":{"@rdf:resource":"http://www.dlib.si/details/URN:NBN:SI:doc-0GH62PMN"}}}}