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Table 1 Responses collected from the HCPs survey

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

Category n (%)
Group of IMD patients followed at the centre  
 Adult 8/73 (11)
 Paediatric 18/73 (24.7)
 Both 47/73 (64.4)
Paediatric patients infected with SARS-CoV-2 (confirmed by testing) in the centre  
 Yes 5/73 (6.9)
 No 62/73 (84.9)
 Do not know 6/73 (8.2)
 Total number of paediatric reported cases 13
Symptoms of paediatric patients positive for COVID-19  
At diagnosis  
 Asymptomatic 1/13 (8)
 Mild 12/13 (92)
 Severe 0/13 (0)
 Do not know 0/13 (0)
During the infection  
 Asymptomatic 1/13 (8)
 Mild 12/13 (92)
 Severe with need of hospitalisation 0/13 (0)
 Required intensive care 0/13 (0)
Adult patients infected with SARS-CoV-2 (confirmed by testing) in the centre  
 Yes 7/73 (9.6)
 No 54/73 (74)
 Do not know 12/73 (16.4)
 Total number of adult reported cases 11
Symptoms of adult patients positive for COVID-19  
At diagnosis  
 Asymptomatic 0/11 (0)
 Mild 10/11 (91)
 Severe 1/11 (9)
 Do not know 0/11 (0)
During the infection  
 Asymptomatic 0/11 (0)
 Mild 9/11 (82)
 Severe with need of hospitalisation 2/11 (18)
 Required intensive care 0/11 (0)
Casualties due to COVID-19 among IMD patients  
 Yes 0/73 (0)
 No 64/73 (87.7)
 Do not know 9/73 (12.3)
Change needed in the management of IMD patients  
 Yes 66/73 (90.4)
 No 7/73 (9.6)
Change needed in the therapy regime of IMD patients with no COVID-19*  
 Yes, the frequency of therapy has been reduced 19/73 (26)
 Yes, the therapy has been stopped 3/73 (4.1)
 Yes, the frequency of rehabilitation has been reduced 12/73 (16.4)
 Yes, rehabilitation has been stopped 15/73 (20.6)
 Only for some specific cases 14/73 (19.2)
 No 26/73 (35.6)
Changes in therapeutic regimes unified at national or regional level  
 Yes 25/45 (55.6)
 No 20/45 (44.4)
Proportion of missed outpatient visit for IMD at the centre  
 0–25% 5/73 (6.9)
 25–50% 3/73 (4.1)
 50–75% 20/73 (27.4)
 75–100% 40/73 (54.8)
 Not applicable 5/73 (6.9)
Outpatient face-to-face visits replaced by video conference/telephone interaction  
 Yes 66/73 (90.4)
 No 4/73 (5.5)
 Not applicable 3/73 (4.1)
Patients stopped treatment by their own decision  
 Yes 10/73 (13.7)
 No 57/73 (78.1)
 Do not know 6/73 (8.2)
Disease categories expected to be at major risk in relation to COVID-19*  
 AOA 42/73 (57.5)
 PM-MD 41/73 (56.2)
 C-FAO 33/73 (45.2)
 LSD 38/73 (52)
 PD 14/73 (19.2)
 CDG 18/73 (24.7)
 NOMS 9/73 (12.3)
Awareness of good-quality informative material about COVID-19 and IMD  
 Yes 26/73 (35.6)
 No 33/73 (45.2)
 Do not know 14/73 (19.2)
Centre produced informative material about COVID-19 and IMD  
 Yes 27/73 (37)
 No 42/73 (57.5)
 Do not know 4/73 (5.5)
Centre offering special informative/psychological support to IMD patients during the pandemic  
 Yes 43/73 (58.9)
 No 24/73 (32.9)
 Do not know 6/73 (8.2)
PO helping HCP in providing special support during the pandemic  
 Yes 42/73 (57.5)
 No 21/73 (28.8)
 Do not know 10/73 (13.7)
Active COVID-19 helpline for IMD patients in the centre  
 Yes 38/73 (52.1)
 No 32/73 (43.8)
 Do not know 3/73 (4.1)
Patients prone to metabolic crises have the same open access to hospital as before the COVID-19 outbreak  
 Yes 49/73 (67.1)
 No 18/73 (24.7)
 Do not know 6/73 (8.2)
  1. *More than one answer possible
  2. AOA, amino and organic acids-related disorders; PM-MD, disorder of pyruvate metabolism, Krebs cycle defects, mitochondrial oxidative phosphorylation disorders, disorders of thiamine transport and metabolism; C-FAO, carbohydrate, fatty acid oxidation and ketone bodies disorders; LSD, lysosomal storage disorders; PD, peroxisomal disorders; CDG, congenital disorders of glycosylation and disorders of intracellular trafficking; NOMS, disorders of neuromodulators and other small molecules
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