Results
A total of 4620 answers were collected; from this total, 109 were eliminated as they came from non-European countries and 190 declared they did not use HCQ. Seventy-four responded between 22 April and 10 August. The remaining 4247 answers from patients coming from 27 European countries were used in the present analysis. In the analysis on availability, 688 respondents who did not indicate a purchase time or who indicated their last purchase was more than 1 month ago were excluded. Data availability is summarised in a flow chart (figure 1).
Figure 1Flow chart of answers/data availability. HCQ, hydroxychloroquine.
Of 2075 patients responding between 3 April and 21 April (first wave), 1001 (48.2%) could get HCQ directly from the first place they asked; 230 (11.1%) could get some, but by going to more than one pharmacy; 498 (24.0%) could not get any HCQ immediately, but obtained some later (next day, few days later, a week later, etc) from their usual pharmacy; lastly, 126 (6.1%) could not get any HCQ, but obtained some later from another source (family, doctor, friends, etc) and 188 (9.1%) could not get any and were still without HCQ at the time of filling in the questionnaire. Thirty-two (1.5%) did not respond to this question.
After 11 August (second wave), 1558 responses were collected. In the second phase, 1297 patients (83.2%) could obtain HCQ directly from the first place they asked; 83 (12.3%) could get it, but had to go to more than one pharmacy; 98 (20.0%) could not get any HCQ immediately, but obtained some later from their usual pharmacy; and 46 (3.1%) could not get any HCQ immediately, but obtained some later from another source (family, doctor, friends, etc). Only 12 (0.8%) patients could not get any and were still without HCQ at the time of filling in the questionnaire. Twenty-two (1.4%) did not respond to this question.
Because several measures to enhance the availability of HCQ to patients with SLE have been taken on a national basis, the situation has evolved differently on a country-by-country basis. Table 1 summarises the key results for each country where more than 15 answers have been obtained in each of the two waves.
All countries showed significant improvement in HCQ availability from April to August and, with the exception of Bulgaria, the proportion of patients without their medication is back to very low level (typically 0%) everywhere. The situation in Bulgaria, where HCQ has typically been absent from the market for several years, is not COVID-19-related.
Participants were also asked to define the number of boxes they requested and the quantities they actually received.
From those responding in wave 1 (n=1751), 851 (48.6%) asked for one box only and received it. Another 74 (4.2%) asked for one box and received a smaller one than expected. 826 (47.2%) asked for more than one box and the majority (593 or 33.9% of all) received them while 233 (13.3%) only received one box. In wave 2, 1475 patients answered this question, among them 660 (44.7%) asked for one box only and received it, while 11 (0.7%) received a smaller box than expected. Interestingly, 804 (54.5%) asked for more than one box and the vast majority (733 or 49.7% of all) received them while 71 (4.8%) only received one box.
In wave 1 and wave 2, 2230 and 1691 patients (92.9% and 91.6%), respectively, provided answers about their level of anxiety. In wave 1 the median level of anxiety was 7 (IQR 5–9), while in wave 2 the level of anxiety was 5 (IQR 1–7); the difference in the level of anxiety was statistically significant (p<0.001) (figure 2).
Figure 2Level of anxiety of patients in waves 1 and 2. HCQ, hydroxychloroquine.
Excluding Bulgaria, where the issue was still ongoing in August, 562 (27.4%) patients reported an extremely high level of anxiety (9 or 10) in wave 1 and still 162 (10.3%) in wave 2; a high level of anxiety (7 or 8) was reported by 589 (28.7%) and 268 (17.1%) patients in wave 1 and wave 2, respectively.