Perceptions, Behaviors and Experiences Related to Covid-19 and the Covid-19 Vaccine: A Survey of U.S.-Based Sjogren's Patients

ABSTRACT

Background. Information specific to Sjogren's patients and their experience with COVID-19 and COVID-19 vaccination have been relatively limited. To help address these gaps, the Sjogren's Foundation created a survey for its members and U.S.-based Sjogren's patients to gain insight into their perceptions, behaviors and experiences related to COVID-19 and the COVID-19 vaccine. Methods. The Sjogren's Foundation created and launched a nine-question patient survey on COVID-19 and COVID-19 vaccination on March 11, 2021. The survey has remained open since. The survey was hosted on SurveyMonkey, an online survey platform, and shared with adult Sjogren's patients aged >= 18 and living in the United States who were members of the Sjogren's Foundation. Responses were collected anonymously through the online platform and summary data for the group as a whole has been analyzed on an ongoing basis. Results. A total of 593 responses to the survey were received as of May 4, 2022. The majority of respondents have not had COVID-19 (95%). In those self-reporting that they had been diagnosed with COVID-19 (n=35), 80% reported experiencing only mild-to-moderate symptoms. Combined, 72% of respondents had received a first dose of the COVID-19 vaccine (Pfizer, 36%;Moderna 34%;Johnson & Johnson, 2%). Within this group, 64% reported that they either did not experience any reactions or symptoms or experienced only mild events. Additionally, in those who experienced a reaction or symptom after receiving the first dose of the vaccine (n=264), 78% stated the experience lasted 48 hours or less. Combined, 49% had received a second dose of the COVID-19 vaccine (Pfizer, 26%;Moderna, 23%). Similar to the first dose of the COVID-19 vaccine, most respondents either did not experience any reactions or symptoms or experienced only mild events (59%). Events experienced after the second dose subsided in 48 hours or less in the majority of respondents (72%). In total, 12% of respondents stated that they were not willing to get the vaccine. Conclusions. The majority of patients with Sjogren's responding to the survey have not had COVID-19 and were willing to be vaccinated. In those who have had COVID-19, Sjogren's patients reported that symptoms were mostly mild to moderate and lasted less than 48 hours. Similarly, most Sjogren's patients responding to the survey experienced only mild reactions or symptoms that subsided after 48 hours when receiving the first and second dose of the COVID-19 vaccine. It is important to note that this survey was launched early in the vaccine rollout, and those stating that they had not received a first or second dose of the vaccine or stated that they did not plan to get the vaccine, may not have done so or felt that way due to availability, eligibility and information available at the time. The majority of responses were received between March and May of 2021.