Demographics of Patient and Physician Participants
| Characteristic, n (%) | Patientsa (n = 33) | Physiciansa (n = 20) |
|---|---|---|
| Patient age | ||
| 18–35 years | 4 (12) | NA |
| 36–65 years | 26 (79) | NA |
| 66+ years | 3 (9) | NA |
| Female | 29 (88) | NA |
| Race/Ethnicity | ||
| Black/African American | 16 (48) | 2 (10) |
| Latino/a | 10 (30) | 0 |
| Asian/Pacific Islander | 5 (15) | 4 (20) |
| Native American | 2 (6) | 1 (5) |
| White/Caucasian | 0 | 12 (60) |
| Prefer not to disclose | 0 | 1 (5) |
| Region | ||
| Northeast | 11 (33) | 8 (40) |
| Midwest | 5 (15) | 1 (5) |
| South | 12 (36) | 8 (40) |
| West | 5 (15) | 3 (15) |
| Education level | ||
| Some high school or lessb | 2 (6) | 0 |
| Some college | 8 (24) | 0 |
| Graduated college/technical school | 17 (52) | 0 |
| Postgraduate degree | 6 (18) | 20 (100) |
| Employment status | ||
| Full time | 11 (33) | NA |
| Part time | 4 (12) | NA |
| Otherc | 18 (55) | NA |
| Type of lupus | ||
| SLE | 23 (70) | NA |
| CLE | 4 (12) | NA |
| Otherd | 6 (18) | NA |
| Severity of lupus | ||
| Mild | 4 (12) | NA |
| Moderate | 23 (70) | NA |
| Severe | 6 (18) | NA |
| Physician specialty | NA | |
| Rheumatology | NA | 11 (55) |
| Dermatology | NA | 9 (45) |
| Investigator vs referring physician | ||
| Referring physician | NA | 14 (70) |
| Investigator | NA | 6 (30) |
| Years experience post-residency | ||
| 5–19 years | NA | 13 (65) |
| 20+ years | NA | 7 (35) |
| Physician practice: patient race | ||
| Majority Black or African American (> 50% of patients) | NA | 7 (35) |
| Majority White/Caucasian (> 50% of patients) | NA | 4 (20) |
| Mix (all races < 50% of patients) | NA | 9 (45) |
| Physician practice: patient insurance coverage | ||
| Physicians with commerically/privately insured (> 50% of patients) | NA | 11 (55) |
| Physicians with Medicare insured (> 50% of patients) | NA | 1 (5) |
| Physicians with mix (private and Govt insured, all < 50% of patients) | NA | 8 (40) |
CLE = cutaneous lupus erythematosus; NA = not applicable or data not available; SLE = systemic lupus erythematosus.
aPatient participants were recruited from a database of individuals who agreed to be contacted for research purposes. Interviews were conducted between November 2020 and January 2021 (patients) and between December 2020 and February 2021 (physicians).
bIncludes 1 patient who was currently in school.
cIncludes on disability (n = 8), retired (n = 4), homemaker (n = 4), unemployed, looking for work (n = 1), and student (n = 1).
dIncludes both SLE and CLE (n = 3) and unknown/not sure (n = 3).