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Table 2 Responses collected from the PO survey

From: The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys

Category n (%)
PO contacted by/know of IMD patient with COVID-19  
 Yes 5/39 (12.8)
 No 34/39 (87.2)
PO and/or its members in close contact with the specialised centre/HCP about the COVID-19 crisis  
 Yes 26/39 (66.7)
 No 7/39 (18)
 Do not know 6/39 (15.3)
PO informed by specialist centre about COVID-19 and its risk for IMD patients  
 Yes 27/37 (73)
 No 10/37 (27)
Centers following IMD patients in the country that are in contact with the PO  
 All of them 10/36 (27.8)
 Most of them (≥ 50%) 8/36 (22.2)
 A few (< 50%) 10/36 (27.8)
 None 8/36 (22.2)
Centers have put into place measures or alternative pathways to prevent COVID-19 in IMD patients  
 Yes, all of them 10/37 (27)
 Yes, some of them 8/37 (21.6)
 Almost none 2/37 (5.4)
 None 4/37 (10.8)
 Do not know 13/37 (35.1)
PO’s members experiencing changes  
In follow up visits at the specialised centre  
 Yes 32/37 (86.5)
 No 1/37 (2.7)
 Do not know 4/37 (10.8)
In follow up visits for clinical trials at the specialised centre  
 Yes 14/30 (46.7)
 No 3/30 (10)
 Do not know 13/30 (43.3)
Type of changes*  
 Cancellations of outpatient stays 17/31 (54.8)
 Cancellations of inpatient stays 10/31 (32.3)
 Postponing of appointments 28/31 (90.3)
Changes in IMD treatment due to COVID-19 pandemic  
 Yes 20/39 (51.3)
 No 19/39 (48.7)
Type of changes*  
 Discontinuation 13/20 (65)
 Prolonged time between treatments 7/20 (35)
 Switch to home therapy 10/20 (50)
 Problems in getting the medication 5/20 (25)
Therapies (physio, speech, or enzyme replacement therapy, etc.) continued  
 Yes 10/38 (26.3)
 No 16/38 (42.1)
 Do not know 12/38 (31.6)
Psychological support available for patients scared about COVID-19  
 Yes 28/39 (71.8)
 No 11/39 (28.2)
Specialist/entity providing psychological support*  
 Physician 8/32 (25)
 Psychologist 11/32 (34.4)
 Social worker 7/32 (21.9)
 PO 21/32 (65.6)
 Other 13/32 (40.6)
Method/technology used to provide psychological support*  
 Phone 25/31 (80.7)
 Mail/Email 20/31 (64.5)
 Video 15/31 (48.4)
 Other 9/31 (29)
  1. *More than one answer possible
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