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Deprecated: Implicit conversion from float 300.79999999999995 to int loses precision in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 534 Adv+Clin+Exp+Med 2021 ; 30 (4): 449-454 Nephropedia Template TP
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Is home-based therapy in Fabry disease the answer to compelling patients needs during the COVID-19 pandemic? Survey results from the Polish FD Collaborative Group #MMPMID33908195
Kusztal M; Klopotowski M; Bazan-Socha S; Blazejewska-Hyzorek B; Pawlaczyk K; Oko A; Krajewska M; Nowicki M
Adv Clin Exp Med 2021[Apr]; 30 (4): 449-454 PMID33908195show ga
BACKGROUND: Fabry disease (FD) is an X-linked disorder related to a deficiency of the lysosomal enzyme alpha-galactosidase A. In Poland, enzyme replacement therapy (ERT) for FD is offered by the National Health Fund only at selected hospital infusion centers. Patients with FB are considered at a high risk of developing complications from COVID-19. Some patients omitted infusions due to fear of infection or outbreaks in hospitals. Lack of alternative infusion sites hampered the situation. OBJECTIVES: To analyze the impact of the SARS-CoV-2 pandemic on FD patients, especially their fears and expectations, the Polish FD Collaborative Group collaborated on a survey project. MATERIAL AND METHODS: Between September and November 2020, we distributed a customized survey exploring expectations and fears among FD subjects. RESULTS: Fifty-five individuals (35 receiving ongoing ERT) from different FD centers completed the study. The median age was 40 years [IQR 25; 50], and gender distribution was almost equal (27 F; 28 M). One-fourth of FD patients reported severe disability limiting transportation for infusions that, in the opinion of the other 25% of responders, consumed >4 h. Forty-four (80%) of all would prefer home infusions performed by a nurse (n = 37, 67.3%) or by a trained non-medical person (n = 7, 12.7%), while 8 (14.5%) patients would choose a local hospital. As expected, transportation time (in one direction) was longer in those preferring home infusions (89.4 +/-63 vs 36.2 +/-67 min; p = 0.02). Also, those with more severe FD manifestation would prefer home infusions to treatment in FD centers (p = 0.03). The vast majority of respondents (n = 46; 83%) would not change their preferences after pandemic termination. CONCLUSIONS: To maintain ERT, FD patients prefer home infusions or those given in the nearest hospital, especially during a pandemic.