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Table 3 Description and levels of concern of the IMD patient community

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

Description of concern Level of concern
Not worried at all Somewhat worried Neither worried nor unworried Worried Extremely worried
Having the therapy suspended 1/3
(2.8)
8/36
(22.2)
3/36
(8.3)
14/36
(38.9)
10/36
(27.8)
Not having access to the same standard quality of care as before 2/36
(5.6)
2/36
(5.6)
6/36
(16.7)
16/36
(44.4)
10/36
(27.8)
Anxiety and mental health issues related with the quarantine and current medical care limitations 0/35
(0)
6/35
(17.1)
6/35
(17.1)
18/35
(51.4)
5/35
(14.3)
Possibility of getting COVID-19 0/35
(0)
4/35
(11.4)
2/35
(5.7)
12/35
(34.3)
17/355
(48.6)
Additional strain being put on family caregivers 0/34
(0)
5/34
(14.7)
3/34
(8.8)
19/34
(55.9)
7/34
(20.6)
Patients/caregivers not having access to reliable and comprehensible information 5/36
(13.9)
6/36
(16.7)
10/36
(27.8)
9/36
(25)
6/36
(16.7)
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