OBJECTIVE: To report the results of a survey exploring the experience of patients with SLE facing hydroxychloroquine (HCQ) shortage that occurred during the early phases of the COVID-19 pandemic .
METHODS: A survey was designed by Lupus Europe's patient advisory network and distributed through its social media, newsflash and members' network . People with lupus were asked about their last HCQ purchases and their level of anxiety (on a 0-10 scale) with regard to not being able to have access to HCQ, once in April 2020 (first wave) and after 11 August (second wave). The results were compared .
RESULTS : 2075 patients responded during the first wave; 1001 (48.2 %) could get HCQ from the first place they asked , 230 (11.1 %) could get the drug by going to more than one pharmacy , 498 (24.0 %) obtained HCQ later from their usual pharmacy and 126 (6.1 %) from other sources . 188 (9.1 %) could not get any; 32 (1.5 %) did not respond to this question . All countries showed significant improvement in HCQ availability during the second wave . 562 (27.4 %) patients reported an extremely high level of anxiety in wave 1 and 162 (10.3 %) patients in wave 2; 589 (28.7 %) and 268 (17.1 %) patients reported a high level of anxiety in wave 1 and wave 2, respectively .
CONCLUSIONS: The HCQ shortage had a significant impact on patients with SLE and has been responsible for psychological consequences including anxiety . Indeed, despite an objective improvement in drug availability, the event is leaving significant traces in patients' mind and behaviours.