Baseline characteristics of WELL and Usual Care participants
| Category | Measure | Usual Care (n=531) | WELL (n=168) |
| Demographics | Age (years) | 47.3 (14.0) | 49.8 (12.3) |
| Disease duration (years) | 15.4 (10.5) | 16.4 (9.9) | |
| Education (years) | 14.1 (2.8) | 14.3 (2.9) | |
| Work status, n (%) | |||
| Working full time | 147 (27.9) | 28 (16.8) | |
| Working part-time | 63 (12.0) | 11 (6.6) | |
| Retired | 68 (12.9) | 22 (13.2) | |
| Home maker | 29 (5.5) | 2 (1.2) | |
| Student | 17 (3.2) | 4 (2.4) | |
| Unemployed or disabled | 202 (38.4) | 100 (59.9) | |
| Health-related quality of life | PROMIS global health-physical | 40.6 (8.8) | 38.3 (7.5) |
| PROMIS global health-mental | 43.5 (9.2) | 41.4 (9.0) | |
| PROMIS depression | 51.1 (10.9) | 53.5 (9.2) | |
| PROMIS physical function | 40.6 (10.0) | 38.4 (7.6) | |
| PROMIS pain interference | 57.7 (10.1) | 59.0 (9.2) | |
| PROMIS fatigue | 57.5 (11.2) | 58.6 (10.6) | |
| PROMIS sleep disturbance | 56.7 (10.7) | 57.3 (10.8) | |
| PROMIS anxiety | 51.9 (11.4) | 53.9 (10.5) | |
| PROMIS anger | 51.2 (12.5) | 53.0 (11.4) | |
| PROMIS ability to participate in social roles and activities | 47.5 (10.1) | 45.3 (8.3) | |
| Self-management beliefs and behaviours | PROMIS self-efficacy to manage medicines | 46.2 (9.2) | 46.0 (9.0) |
| PROMIS self-efficacy to manage symptoms | 48.3 (8.7) | 47.1 (7.8) | |
| Communication with physicians* | 2.9 (1.1) | 3.1 (1.1) | |
| Patient Activation Measure (PAM), n (%) | |||
| Level 1 (disengaged and overwhelmed) | 39 (7.5) | 12 (7.3) | |
| Level 2 (becoming aware, still struggling) | 123 (23.5) | 24 (14.5) | |
| Level 3 (taking action) | 264 (50.5) | 90 (54.5) | |
| Level 4 (maintain behaviours/push further) | 97 (18.5) | 39 (23.6) | |
| Psychosocial factors | Perceived stress† | 6.3 (3.2) | 6.2 (3.2) |
| PROMIS emotional support | 51.3 (9.3) | 51.4 (9.2) | |
| PROMIS informational support | 53.6 (10.7) | 52.4 (9.9) | |
| PROMIS instrumental support | 53.1 (9.3) | 51.4 (9.2) | |
| PROMIS social isolation | 47.3 (10.9) | 49.9 (10.9) | |
| Everyday discrimination‡ | 1.6 (0.6) | 1.7 (0.6) | |
| Disease severity | Disease activity (SLAQ score)§ | 14.4 (8.7) | 16.9 (8.6) |
| Organ damage score level¶, n (%) | |||
| No damage (SA-BILD score=0) | 112 (21.3) | 29 (17.3) | |
| Mild damage (SA-BILD score=1–2) | 210 (39.8) | 58 (34.5) | |
| Severe damage (SA-BILD score ≥3) | 205 (38.9) | 81 (48.2) |
Statistic values are displayed as mean (SD) unless otherwise specified.
PROMIS measures are reported using a T-score metric in which 50 is the mean and 10 is the SD of a reference population, with higher scores indicating more of the domain being measured.
*Scores range from 0 to 5, with higher scores indicating better communication.
†Scores range from 0 to 16, with higher scores indicating higher perceived stress.
‡Scores range from 1 to 4, with higher scores indicating higher perceptions of discrimination.
§Scores range from 0 to 47, with higher scores indicating higher disease activity.
¶Scores range from 0 to 30, with higher scores indicating higher lupus damage.
PROMIS, Patient-Reported Outcome Measurement Information System Measure; SA-BILD, Self-Administered Brief Index of Lupus Damage; SLAQ, Systemic Lupus Activity Questionnaire; WELL, Women Empowered to Live with Lupus study.