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) |