Manifestations and impact of the COVID‐19 pandemic in neuroinflammatory diseases

Levin, Seth N.; Venkatesh, Shruthi; Nelson, Katie E.; Li, Yi; Aguerre, Ines; Zhu, Wen; Masown, Karman; Rimmer, Kathryn T.; Diaconu, Claudiu I.; Onomichi, Kaho B.; Leavitt, Victoria M.; Levine, Libby L.; Strauss‐Farber, Rebecca; Vargas, Wendy S.; Banwell, Brenda; Bar‐Or, Amit; Berger, Joseph R.; Goodman, Andrew D.; Longbrake, Erin E.; Oh, Jiwon; Weinstock‐Guttman, Bianca; Thakur, Kiran T.; Edwards, Keith R.; Riley, Claire S.; Xia, Zongqi; De Jager, Philip L.

OBJECTIVE: To report initial results of a planned multicenter year‐long prospective study examining the risk and impact of COVID‐19 among persons with neuroinflammatory disorders (NID), particularly multiple sclerosis (MS). METHODS: In April 2020, we deployed online questionnaires to individuals in their home environment to assess the prevalence and potential risk factors of suspected COVID‐19 in persons with NID (PwNID) and change in their neurological care. RESULTS: Our cohort included 1115 participants (630 NID, 98% MS; 485 reference) as of 30 April 2020. 202 (18%) participants, residing in areas with high COVID‐19 case prevalence, met the April 2020 CDC symptom criteria for suspected COVID‐19, but only 4% of all participants received testing given testing shortages. Among all participants, those with suspected COVID‐19 were younger, more racially diverse, and reported more depression and liver disease. PwNID had the same rate of suspected COVID‐19 as the reference group. Early changes in disease management included telemedicine visits in 21% and treatment changes in 9% of PwNID. After adjusting for potential confounders, increasing neurological disability was associated with a greater likelihood of suspected COVID‐19 (OR(adj) = 1.45, 1.17–1.84). INTERPRETATIONS: Our study of real‐time, patient‐reported experience during the COVID‐19 pandemic complements physician‐reported MS case registries which capture an excess of severe cases. Overall, PwNID seem to have a risk of suspected COVID‐19 similar to the reference population.