Abstract
Background: Early in the COVID-19 pandemic it was recognized that individuals who had worse prognoses had hyperinflammatory reactions associated with SARS CoV-2. This was worrisome for patients with systemic autoinflammatory diseases (SAID) who already have episodic hyperinflammation at baseline.
Aim: To assess the effects of the COVID-19 pandemic and SARS CoV-2 infection on patients with SAID.
Methods: An anonymous survey developed on the Survey Monkey platform was distributed online through social media and support groups of patients with SAID between January 20th and May 17th of 2021.
Results: We analyzed 484 surveys that conveyed data from 593 patients with SAID. Seventy-four percent of the surveys were answered in the United States, US territories, and Canada (n=360/484) and the rest from other countries. Sixty percent (n=330/547) of patients with SAID did not experience changes in the frequency of flares during the first year of the pandemic. Ten percent (n=52/545) of patients had presumed or confirmed COVID-19. Of those, 81% (n=42/52) had mild and moderate symptoms and 4 were hospitalized. Thirty-one percent (n=16/52) experienced flares during or after the infection and 40% (n=21/52) reported post-COVID manifestations. The individuals who had moderate symptoms or were hospitalized for COVID-19 were more likely to report post-COVID manifestations, OR 5.25 (95%CI 1.57-17.6, p=0.0072). Post-COVID integumentary manifestations occurred after asymptomatic and mild COVID-19 whereas neurologic manifestations occurred after acute COVID-19 with moderate symptoms or requiring hospitalization.
Conclusion: During the COVID-19 pandemic, over half of patients with SAID did not experience changes in the frequency of flares despite a decreased exposure to environmental triggers. Few individuals with SAID required hospitalization for COVID-19. The presence and type of post-COVID manifestations were associated with the severity of acute COVID-19 in patients with SAID.