Table 2 Responses collected from the PO survey
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) |