A retrospective analysis of metabolic control in children with PKU in the COVID-19 era

Becsei, Dóra; Kiss, Erika; Szatmári, Ildikó; Arató, András; Reusz, György; Szabó, Attila; Bókay, János; Zsidegh, Petra

doi:10.1016/j.ymgmr.2022.100897

Cited by 1 publication

(1 citation statement)

References 28 publications

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“…PKU patients experienced new challenges during COVID-19 pandemic such as the very limited access to the routine care (on-site clinical visits, metabolic controls, blood monitoring frequencies by means of self-sampling), the insecurity regarding the access to the medical and special low-protein foods they need [ 33 ]. Despite the movement restrictions and the quarantine measures that many countries implemented during the COVID-19 pandemic, newborn screening and metabolic controls did not experience a discontinuity in especially for children and adolescent patients in Hungary and Italy [ 34 – 35 ]. On the contrary, adherence to the recommended measurement intervals decreased during the pandemic for PKU patients over 16 years and young adults in Austria [ 36 ].…”

Section: Discussionmentioning

confidence: 99%

The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review

Cannizzo,

Quoidbach,

Giunti

et al. 2024

Orphanet J Rare Dis

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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.

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Section: Discussionmentioning

confidence: 99%