Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond

Nowicki, Michał; Bazan-Socha, Stanisława; Kłopotowski, Mariusz; Błażejewska-Hyżorek, Beata; Kusztal, Mariusz; Pawlaczyk, Krzysztof; Sławek, Jarosław; Oko, Andrzej; Oko-Sarnowska, Zofia

doi:10.3390/ijerph18168242

Open AccessOpinion

Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond

by

Michał Nowicki

^1,*

,

Stanisława Bazan-Socha

²

,

Mariusz Kłopotowski

³,

Beata Błażejewska-Hyżorek

⁴,

Mariusz Kusztal

⁵

,

Krzysztof Pawlaczyk

^6,7

,

Jarosław Sławek

⁸,

Andrzej Oko

⁷

and

Zofia Oko-Sarnowska

^9,†

on behalf of the Polish Fabry Disease Collaborative Group

¹

Department of Nephrology, Hypertension, and Kidney Transplantation, Medical University of Łódź, 90-145 Łódź, Łódzkie, Poland

²

Department of Internal Medicine, Jagiellonian University Medical College, 30-688 Kraków, Małopolskie, Poland

³

Department of Interventional Cardiology and Angiology, Institute of Cardiology, 04-628 Warsaw, Mazowieckie, Poland

⁴

2nd Department of Neurology, Institute of Psychiatry and Neurology, 02-957 Warsaw, Mazowieckie, Poland

⁵

Department of Nephrology and Transplantation Medicine, Wrocław Medical University, 50-556 Wrocław, Dolnośląskie, Poland

⁶

Department of Nephrology, University Hospital of Karol Marcinkowski in Zielona Góra, 65-046 Zielona Góra, Lubuskie, Poland

⁷

Department of Nephrology, Transplantology, and Internal Diseases, Poznań University of Medical Sciences, 60-355 Poznań, Wielkopolskie, Poland

⁸

Division of Neurological and Psychiatric Nursing, Institute of Nursing and Midwifery, Medical University of Gdańsk, 80-462 Gdańsk, Pomorskie, Poland

⁹

Department of Cardiology, Poznań University of Medical Sciences, 60-355 Poznań, Wielkopolskie, Poland

^*

Author to whom correspondence should be addressed.

^†

Polish Fabry Disease Collaborative Group are listed in acknowledgments.

Int. J. Environ. Res. Public Health 2021, 18(16), 8242; https://doi.org/10.3390/ijerph18168242

Submission received: 24 June 2021 / Revised: 30 July 2021 / Accepted: 2 August 2021 / Published: 4 August 2021

(This article belongs to the Special Issue Risk Management of COVID-19 and Public Health: Medical, Economic, Finance, Business, Political and Educational Implications)

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Abstract

Current therapy for Anderson–Fabry disease in Poland includes hospital or clinic-based intravenous enzyme replacement therapy with recombinant agalsidase alpha or beta, or oral pharmacological chaperone therapy with migalastat. Some countries around the world offer such treatment to patients in the comfort of their own homes. The 2020–2021 COVID-19 pandemic has pushed global healthcare providers to evolve their services so as to minimize the risk of COVID-19 exposure to both patients and providers; this has led to advances in telemedicine services and the increasing availability of at-home treatment for various procedures including parenteral drug administration. A total of 80% of surveyed Anderson–Fabry disease patients in Poland would prefer home-based treatment, which would be a safe and convenient alternative to clinic-based treatment if patient selection is based on our proposed algorithm. Our recommendations for home-based treatments appear feasible for the long term care of Anderson–Fabry disease patients during the COVID-19 pandemic and beyond. This may also serve as a basis for home-based treatment programs in other rare and ultra-rare genetic diseases.

Keywords: enzyme replacement therapy; Fabry disease; home-based treatment; telemedicine

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MDPI and ACS Style

Nowicki, M.; Bazan-Socha, S.; Kłopotowski, M.; Błażejewska-Hyżorek, B.; Kusztal, M.; Pawlaczyk, K.; Sławek, J.; Oko, A.; Oko-Sarnowska, Z., on behalf of the Polish Fabry Disease Collaborative Group. Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond. Int. J. Environ. Res. Public Health 2021, 18, 8242. https://doi.org/10.3390/ijerph18168242

AMA Style

Nowicki M, Bazan-Socha S, Kłopotowski M, Błażejewska-Hyżorek B, Kusztal M, Pawlaczyk K, Sławek J, Oko A, Oko-Sarnowska Z on behalf of the Polish Fabry Disease Collaborative Group. Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond. International Journal of Environmental Research and Public Health. 2021; 18(16):8242. https://doi.org/10.3390/ijerph18168242

Chicago/Turabian Style

Nowicki, Michał, Stanisława Bazan-Socha, Mariusz Kłopotowski, Beata Błażejewska-Hyżorek, Mariusz Kusztal, Krzysztof Pawlaczyk, Jarosław Sławek, Andrzej Oko, and Zofia Oko-Sarnowska on behalf of the Polish Fabry Disease Collaborative Group. 2021. "Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond" International Journal of Environmental Research and Public Health 18, no. 16: 8242. https://doi.org/10.3390/ijerph18168242

APA Style

Nowicki, M., Bazan-Socha, S., Kłopotowski, M., Błażejewska-Hyżorek, B., Kusztal, M., Pawlaczyk, K., Sławek, J., Oko, A., & Oko-Sarnowska, Z., on behalf of the Polish Fabry Disease Collaborative Group. (2021). Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond. International Journal of Environmental Research and Public Health, 18(16), 8242. https://doi.org/10.3390/ijerph18168242

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Considerations for Home-Based Treatment of Fabry Disease in Poland during the COVID-19 Pandemic and Beyond

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