Table 3.

Description and levels of concern of the IMD patient community

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)