Table 1

Respondent characteristics (n=2111)

CharacteristicTotal sample
Region*, %
Latin America5.6%
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 202072.0%
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 biologics56.9%
Corticosteroids and/or immunosuppressive drugs and/or biologics11.5%
Antimalarials only25.6%
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.