Table 5 DS caregivers’ perception of delayed diagnosis
From: Caregivers’ experiences and challenges of the diagnostic odyssey in Dravet syndrome
N (%) | |
|---|---|
In your opinion, has the delay in correct diagnosis been harmful to your relative’s health? | |
definitely yes | 38 (35.8) |
rather yes | 24 (22.6) |
rather no | 24 (22.6) |
definitely no | 5 (4.7) |
I do not know | 15 (14.2) |
In your opinion, has your relative taken unnecessary/inappropriate medications as a result of previous inappropriate diagnoses? | |
yes | 71 (67) |
no | 25 (23.6) |
I do not know | 10 (9.4) |
In your opinion, how many unnecessary medications has your relative taken as a result of previous incorrect diagnoses? | |
not applicable | 33 (31.1) |
1–3 | 54 (50.9) |
4–6 | 12 (11.3) |
7–10 | 5 (4.7) |
11–20 | 2 (1.9) |
In your opinion, was your DS relative unnecessarily hospitalised as a result of previous inappropriate diagnoses? | |
yes | 34 (32.1) |
no | 55 (51.9) |
I do not know | 17 (16) |
In your opinion, how many times has your DS relative been unnecessarily hospitalised as a result of previous inappropriate diagnoses? | |
not applicable | 65 (61.3) |
1–3 | 16 (15.1) |
4–6 | 17 (16) |
7–10 | 1 (0.9) |
over 10 | 7 (6.6) |
In your opinion, has your DS relative undergone unnecessary tests, treatments or surgeries as a result of previous, inappropriate diagnoses? | |
yes | 16 (15.1) |
no | 70 (66) |
I do not know | 20 (18.9) |
In your opinion, how many unnecessary tests, treatments or surgeries has your DS relative undergone as a result of previous inappropriate diagnoses? | |
not applicable | 85 (80.2) |
1–3 | 12 (11.3) |
4–6 | 3 (2.8) |
7–10 | 2 (1.9) |
over 10 | 4 (3.8) |