Background Patients with systemic lupus erythematosus (SLE) are known to be at higher risk for severe COVID-19. However, some individuals with SLE are hesitant to receive the COVID-19 vaccine. This study assessed the basis for COVID-19 vaccine hesitancy in individuals with SLE.
Methods A survey was distributed electronically, through the Lupus Foundation of America (LFA) e-newsletters and social media channels, March through April of 2021. The survey was based on an adaptation of the Vaccine Hesitancy Scale (VHS), with additional questions specific to COVID-19 vaccines and detailed demographics.
Results A total of 415 people responded to the survey, of whom 91% indicated that SLE was their primary rheumatologic diagnosis. Mean respondent age was 48, and 27.5% had less than a college education, whereas 31.3% had a graduate degree. When asked about race and ethnicity, 68.7% identified as non-Hispanic White, 15.2% as Black, 9.6% as Latinx, 4.6% as Asian, and 1.2% as Native American. At the time of the survey, 59.6% of respondents had received at least one COVID-19 vaccine dose; of these, 44.5% had spent less than 1 hour scheduling the vaccine, with 30.7% having spent 1-4 hours and 24.8% having spent over 4 hours. Another 20.2% of respondents wanted the COVID-19 vaccine but had not yet received it, and 20.2% did not want the vaccine. The prior year, 76% of respondents received the flu shot;16.1% of respondents indicated they don’t trust the industry that creates vaccines. When asked about their beliefs regarding the COVID-19 vaccines, 66.6% were concerned the vaccine could flare their SLE, 27.1% were worried the vaccine could interact with their medications, 23.5% were concerned due to a history of allergies to foods and/or medications, and 12.2% were afraid they could get COVID-19 from the vaccine. Hesitant respondents were asked what would make them more likely to get the vaccine, and they cited evidence of safety in lupus as most important factor, with recommendations from the American College of Rheumatology (ACR), the LFA, or ‘a trusted doctor’ as more influential than vaccine mandates (figure 1).
Conclusions These results indicate an opportunity for healthcare professionals and patient advocacy organizations to assuage unfounded patient concerns, such as vaccine interactions with medications or food allergies being a contraindication to COVID-19 vaccination, while reassuring patients that vaccine-triggered flares are rare.
Acknowledgement We would like to thank the Lupus Foundation of American for their partnership in this research.
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