COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers

COVID-19 pandemic is an organisational challenge for both healthcare providers and patients. People with rare inherited metabolic disorders (IMD) and rare autoinflammatory diseases (AD) are vulnerable patients whose well-being is deeply connected with regular follow-ups. This study aimed to assess h...

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Autores principales:	Ewa Tobór-Świętek, Jolanta Sykut-Cegielska, Mirosław Bik-Multanowski, Mieczysław Walczak, Dariusz Rokicki, Łukasz Kałużny, Joanna Wierzba, Małgorzata Pac, Karina Jahnz-Różyk, Ewa Więsik-Szewczyk, Beata Kieć-Wilk
Formato:	article
Lenguaje:	EN
Publicado:	MDPI AG 2021
Materias:	COVID-19 inherited metabolic disorders rare autoinflammatory diseases health care providers Medicine R
Acceso en línea:	https://doaj.org/article/a1e686bda785402686c913916bb25a8a
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spelling	oai:doaj.org-article:a1e686bda785402686c913916bb25a8a2021-11-11T17:31:27ZCOVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers10.3390/jcm102148622077-0383https://doaj.org/article/a1e686bda785402686c913916bb25a8a2021-10-01T00:00:00Zhttps://www.mdpi.com/2077-0383/10/21/4862https://doaj.org/toc/2077-0383COVID-19 pandemic is an organisational challenge for both healthcare providers and patients. People with rare inherited metabolic disorders (IMD) and rare autoinflammatory diseases (AD) are vulnerable patients whose well-being is deeply connected with regular follow-ups. This study aimed to assess how e one year of coronavirus pandemic has impacted the treatment of patients with IMD and AD in Poland. Surveys were distributed to all healthcare providers that coordinate the treatment of IMD and AD patients. Thirty-two responders (55%) answered the survey. They provide care to 1726 patients with IMD/AD, including 246 patients on dedicated treatment. In 35% of units, the regular appointments were disrupted, primarily because of patient infection. In 18 hospitals, remote visits were implemented, but only 66.6% of patients used this form of consultation. In 14/32 hospitals, administration of the therapy was delayed (median: 17.4 days). Forty-four patients suffered from SARS-COV-2 infection, in majority with mild symptoms. However, four adult patients developed complications, and one died following a SARS-COV-2 infection. Although most hospitals managed to maintain regular visits during the pandemic, more comprehensive implementation of telemedicine and switch to oral therapy or home infusions would be a reasonable solution for the current epidemic situation.Ewa Tobór-ŚwiętekJolanta Sykut-CegielskaMirosław Bik-MultanowskiMieczysław WalczakDariusz RokickiŁukasz KałużnyJoanna WierzbaMałgorzata PacKarina Jahnz-RóżykEwa Więsik-SzewczykBeata Kieć-WilkMDPI AGarticleCOVID-19inherited metabolic disordersrare autoinflammatory diseaseshealth care providersMedicineRENJournal of Clinical Medicine, Vol 10, Iss 4862, p 4862 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	COVID-19 inherited metabolic disorders rare autoinflammatory diseases health care providers Medicine R
spellingShingle	COVID-19 inherited metabolic disorders rare autoinflammatory diseases health care providers Medicine R Ewa Tobór-Świętek Jolanta Sykut-Cegielska Mirosław Bik-Multanowski Mieczysław Walczak Dariusz Rokicki Łukasz Kałużny Joanna Wierzba Małgorzata Pac Karina Jahnz-Różyk Ewa Więsik-Szewczyk Beata Kieć-Wilk COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers
description	COVID-19 pandemic is an organisational challenge for both healthcare providers and patients. People with rare inherited metabolic disorders (IMD) and rare autoinflammatory diseases (AD) are vulnerable patients whose well-being is deeply connected with regular follow-ups. This study aimed to assess how e one year of coronavirus pandemic has impacted the treatment of patients with IMD and AD in Poland. Surveys were distributed to all healthcare providers that coordinate the treatment of IMD and AD patients. Thirty-two responders (55%) answered the survey. They provide care to 1726 patients with IMD/AD, including 246 patients on dedicated treatment. In 35% of units, the regular appointments were disrupted, primarily because of patient infection. In 18 hospitals, remote visits were implemented, but only 66.6% of patients used this form of consultation. In 14/32 hospitals, administration of the therapy was delayed (median: 17.4 days). Forty-four patients suffered from SARS-COV-2 infection, in majority with mild symptoms. However, four adult patients developed complications, and one died following a SARS-COV-2 infection. Although most hospitals managed to maintain regular visits during the pandemic, more comprehensive implementation of telemedicine and switch to oral therapy or home infusions would be a reasonable solution for the current epidemic situation.
format	article
author	Ewa Tobór-Świętek Jolanta Sykut-Cegielska Mirosław Bik-Multanowski Mieczysław Walczak Dariusz Rokicki Łukasz Kałużny Joanna Wierzba Małgorzata Pac Karina Jahnz-Różyk Ewa Więsik-Szewczyk Beata Kieć-Wilk
author_facet	Ewa Tobór-Świętek Jolanta Sykut-Cegielska Mirosław Bik-Multanowski Mieczysław Walczak Dariusz Rokicki Łukasz Kałużny Joanna Wierzba Małgorzata Pac Karina Jahnz-Różyk Ewa Więsik-Szewczyk Beata Kieć-Wilk
author_sort	Ewa Tobór-Świętek
title	COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers
title_short	COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers
title_full	COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers
title_fullStr	COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers
title_full_unstemmed	COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers
title_sort	covid-19 pandemic and patients with rare inherited metabolic disorders and rare autoinflammatory diseases—organizational challenges from the point of view of healthcare providers
publisher	MDPI AG
publishDate	2021
url	https://doaj.org/article/a1e686bda785402686c913916bb25a8a
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COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases—Organizational Challenges from the Point of View of Healthcare Providers

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