Respondent characteristics (n=2111)
| Characteristic | Total sample |
| Region*, % | |
| Asia | 9.5% |
| Canada | 40.2% |
| Europe | 17.1% |
| Latin America | 5.6% |
| USA | 27.6% |
| Age (years)†, mean (SD) (n=2089) | 48.8 (14.0) |
| Female, % (n=2105) | 92.8% |
| Non-white race and ethnicity‡, % (n=2028) | 34.8% |
| Postsecondary education§, % (n=2065) | 76.6% |
| Household size, mean (SD) (n=2088) | 2.7 (1.4) |
| Relationship status—partnered¶, % (n=2043) | 65.1% |
| Employed**, % (n=2069) | 55.5% |
| Recruited through research cohort††, % | 79.9% |
| Survey completed by 31 December 2020 | 72.0% |
| Time elapsed from 11 March 2020 to survey completion, in days (SD) | 264.9 (96.1) |
| SLE disease duration‡‡, mean years (SD) (n=2079) | 16.7 (12.0) |
| SLE medications taken in the past year§§, % (n=2106) | |
| Antimalarials, and corticosteroids and/or immunosuppressive drugs and/or biologics | 56.9% |
| Corticosteroids and/or immunosuppressive drugs and/or biologics | 11.5% |
| Antimalarials only | 25.6% |
| None | 6.0% |
| Self-reported positive COVID-19 test and/or doctor diagnosis, % | 2.6% |
| Self-reported hospitalisation for COVID-19, % | 0.4% |
*Region: Asia (Seoul, Singapore); Canada (Toronto, Montreal, Calgary, Winnipeg, Quebec City, Halifax, Lupus Canada); Europe (Bilbao, Manchester, Pisa, Spanish Lupus Federation, Lupus Europe); Latin America (Rosario, Mexico City, Argentine Lupus Association); USA (Baltimore, Pittsburgh, Chicago, New York City, Los Angeles, Lupus Foundation of America).
†Age (years) at time of survey completion.
‡Non-white race and ethnicity includes respondents who selected a race and ethnicity option other than, or in addition to, white/Caucasian.
§Postsecondary education includes completion of certificate, diploma or degree greater than a high school diploma or equivalent.
¶Partnered includes common-law partnership or legally married (and not separated).
**Employed includes full-time, part-time or self-employment.
††Research cohort: observational cohorts in established research networks. Does not include SLE advocacy organisations.
‡‡SLE disease duration=age at survey completion–age of SLE diagnosis.
§§Corticosteroids and/or immunosuppressive drugs and/or biologics include: azathioprine, belimumab, colchicine, cyclophosphamide, ciclosporin, intravenous immunoglobulin, leflunomide, methotrexate, mycophenolate mofetil or mycophenolic acid, rituximab, steroids, tacrolimus, ustekinumab or other immunosuppressive drugs.