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Tobór-Świętek E, Sykut-Cegielska J, Bik-Multanowski M, et al. COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases-Organizational Challenges from the Point of View of Healthcare Providers. J Clin Med. 2021;10(21)doi: 10.3390/jcm10214862.
Tobór-Świętek, E., Sykut-Cegielska, J., Bik-Multanowski, M., Walczak, M., Rokicki, D., Kałużny, �. �., Wierzba, J., Pac, M., Jahnz-Różyk, K., Więsik-Szewczyk, E., & Kieć-Wilk, B. (2021). COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases-Organizational Challenges from the Point of View of Healthcare Providers. Journal of clinical medicine, 10(21), . https://doi.org/10.3390/jcm10214862
Tobór-Świętek, Ewa, et al. "COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases-Organizational Challenges from the Point of View of Healthcare Providers." Journal of clinical medicine vol. 10,21 (2021). doi: https://doi.org/10.3390/jcm10214862
Tobór-Świętek E, Sykut-Cegielska J, Bik-Multanowski M, Walczak M, Rokicki D, Kałużny Ł, Wierzba J, Pac M, Jahnz-Różyk K, Więsik-Szewczyk E, Kieć-Wilk B. COVID-19 Pandemic and Patients with Rare Inherited Metabolic Disorders and Rare Autoinflammatory Diseases-Organizational Challenges from the Point of View of Healthcare Providers. J Clin Med. 2021 Oct 22;10(21). doi: 10.3390/jcm10214862. PMID: 34768381; PMCID: PMC8584872.
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J Clin Med. 2021 Oct 22;10(21). doi: 10.3390/jcm10214862.

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

Journal of clinical medicine

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

Affiliations

  1. Department of Metabolic Diseases, Jagiellonian University Medical College, 31-008 Cracow, Poland.
  2. Department of Metabolic Diseases, University Hospital, Jakubowskiego 2 Street, 30-688 Cracow, Poland.
  3. Department of Inborn Errors of Metabolism and Paediatrics, Institute of Mother and Child, Kasprzaka 17a Street, 01-211 Warsaw, Poland.
  4. Department of Medical Genetics, Medical College, Jagiellonian University, Wielicka 265 Street, 30-633 Cracow, Poland.
  5. Department of Pediatrics, Endocrinology, Diabetology, Metabolic Diseases and Cardiology of the Developmental Age, Pomeranian Medical University, Unii Lubelskiej 1 Street, 71-242 Szczecin, Poland.
  6. Department of Paediatrics, Nutrition and Metabolic Diseases, Institute "Children's Memorial Health Institute", al. Dzieci Polskich 20, 04-730 Warsaw, Poland.
  7. Department of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, Szpitalna 27/33 Street, 60-572 Poznan, Poland.
  8. Department of Paediatrics, Hematology and Oncology Medical University of Gdansk, Debniki 7, 80-752 Gdansk, Poland.
  9. Department of Immunology, Institute "Children's Memorial Health Institute", al. Dzieci Polskich 20, 04-730 Warsaw, Poland.
  10. Department of Internal Diseases, Pneumology, Allergology and Clinical Immunology, Military Medical Institute, Szaserów 128 Street, 04-141 Warsaw, Poland.
  11. Unit of Rare Metabolic Diseases, Department of Metabolic Diseases Jagiellonian University, Medical College, University Hospital, Jakubowskiego 2 Street, 30-688 Cracow, Poland.

PMID: 34768381 PMCID: PMC8584872 DOI: 10.3390/jcm10214862

Abstract

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.

Keywords: COVID-19; health care providers; inherited metabolic disorders; rare autoinflammatory diseases

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