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The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review
Orphanet Journal of Rare Diseases, 19 (2024), 1; 81. https://doi.org/10.1186/s13023-023-03005-9
Cannizzo, Sara; Quoidbach, Vinciane; Giunti, Paola; Oertel, Wolfgang; Pastores, Gregory; Relja, Maja; Turchetti, Giuseppe

Citirajte ovaj rad

Cannizzo, S., Quoidbach, V., Giunti, P., Oertel, W., Pastores, G., Relja, M. i Turchetti, G. (2024). The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review. Orphanet Journal of Rare Diseases, 19. (1). doi: 10.1186/s13023-023-03005-9

Cannizzo, Sara, et al. "The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review." Orphanet Journal of Rare Diseases, vol. 19, br. 1, 2024. https://doi.org/10.1186/s13023-023-03005-9

Cannizzo, Sara, Vinciane Quoidbach, Paola Giunti, Wolfgang Oertel, Gregory Pastores, Maja Relja i Giuseppe Turchetti. "The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review." Orphanet Journal of Rare Diseases 19, br. 1 (2024). https://doi.org/10.1186/s13023-023-03005-9

Cannizzo, S., et al. (2024) 'The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review', Orphanet Journal of Rare Diseases, 19(1). doi: 10.1186/s13023-023-03005-9

Cannizzo S, Quoidbach V, Giunti P, Oertel W, Pastores G, Relja M, i sur.. The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review. Orphanet Journal of Rare Diseases [Internet]. 21.02.2024. [pristupljeno 11.01.2025.];19(1). doi: 10.1186/s13023-023-03005-9

S. Cannizzo, et al., "The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review", Orphanet Journal of Rare Diseases, vol. 19, br. 1, Veljača 2024. [Online]. Dostupno na: https://urn.nsk.hr/urn:nbn:hr:105:637900. [Citirano: 11.01.2025.]

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Podaci o radu
Naslov (engleski)The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review
AutorSara Cannizzo
AutorVinciane Quoidbach
AutorPaola Giunti
AutorWolfgang Oertel
AutorGregory Pastores
AutorMaja Relja
AutorGiuseppe Turchetti
Autorova ustanovaSveučilište u Zagrebu
Medicinski fakultet
(KATEDRA ZA NEUROLOGIJU)
Znanstveno / umjetničko
područje, polje i grana		BIOMEDICINA I ZDRAVSTVO
Kliničke medicinske znanosti
Neurologija
Sažetak (engleski)
One of the most relevant challenges for healthcare providers during the COVID- 19 pandemic has been assuring the continuity of care to patients with complex health needs such as people living with rare diseases (RDs). The COVID-19 pandemic accelerated the healthcare sector's digital transformation agenda. The delivery of telemedicine services instead of many face-to-face procedures has been expanded and, many healthcare services not directly related to COVID-19 treatments shifted online remotely. Many hospitals, specialist centres, patients and families started to use telemedicine because they were forced to. This trend could directly represent a good practice on how care services could be organized and continuity of care could be ensured for patients. If done properly, it could boast improved patient outcomes and become a post COVID-19 major shift in the care paradigm. There is a fragmented stakeholders spectrum, as many questions arise on: how is e-health interacting with 'traditional' healthcare providers; about the role of the European Reference Networks (ERNs); if remote care can retain a human touch and stay patient centric. The manuscript is one of the results of the European Brain Council (EBC) Value of Treatment research project on rare brain disorders focusing on progressive ataxias, dystonia and phenylketonuria with the support of Academic Partners and in collaboration with European Reference Networks (ERNs) experts, applying empirical evidence from different European countries. The main purpose of this work is to investigate the impact of the COVID-19 pandemic on the continuity of care for ataxias, dystonia and phenylketonuria (PKU) in Europe. The analysis carried out makes it possible to highlight the critical points encountered and to learn from the best experiences. Here, we propose a scoping review that investigates this topic, focusing on continuity of care and novel methods (e.g., digital approaches) used to reduce the care disruption. This scoping review was designed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) standards. This work showed that the implementation of telemedicine services was the main measure that healthcare providers (HCPs) put in place and adopted for mitigating the effects of disruption or discontinuity of the healthcare services of people with rare neurological diseases and with neurometabolic disorders in Europe.
Ključne riječi (engleski)
Jezikengleski
Vrsta publikacijeZnanstveni rad - Pregledni rad
Status objaveObjavljen
Vrsta recenzijeRecenziran
Verzija publikacijeObjavljena verzija rada (izdavačev PDF)
Naslov časopisaOrphanet Journal of Rare Diseases
Brojčani podacivol. 19, br. 1, 81
e-ISSN1750-1172
DOIhttps://doi.org/10.1186/s13023-023-03005-9
URN:NBNurn:nbn:hr:105:637900
Datum objave publikacije2024-02-21
URL dokumentahttps://ojrd.biomedcentral.com/articles/10.1186/s13023-023-03005-9
Vrsta resursaTekst
Prava pristupaOtvoreni pristup
Uvjeti korištenjaIkona licence Imenovanje 4.0 međunarodna (CC BY 4.0)
Datum i vrijeme pohrane2024-11-26 08:00:40