Table 1.
Demographics, cSLE features, and PROs at baseline (Visit 1; n = 100)
| Measure | Frequency, n (%) | Mean (SD) |
|---|---|---|
| Age, years | 15.8 (2.2) | |
| Female | 80 (80%) | |
| Race | ||
| African American | 48 (48%) | |
| Caucasian | 33 (33%) | |
| Other§ | 19 (19%) | |
| Hispanic ethnicity | 8 (8%) | |
| SLEDAI Score* | 6.0 (5.9) | |
| BILAG Score** | 6.4 (7.6) | |
| SDI Score† | 0.4 (0.7) | |
| MD-global‡ | 2.1 (1.7) | |
| Pediatric PROMIS short form domains | ||
| Anger | 51.1 (12.1) | |
| Anxiety | 48.0 (11.0) | |
| Depressive symptoms | 47.8 (11.9) | |
| Fatigue | 50.7 (14.1) | |
| Mobility | 46.9 (10.1) | |
| Upper extremity function | 46.4 (7.90) | |
| Pain | 50.3 (11.7) | |
| Peer relationships | 49.7 (13.1) | |
| Pediatric Quality of Life Inventory – Generic Score Scale 4.0 | 70.6 (17.8) | |
| Physical function | 68.9 (22.1) | |
| Emotional function | 72.1 (20.9) | |
| Social function | 79.9 (19.8) | |
| School function | 62.9 (20.6) | |
| Pediatric Quality of Life Inventory – Rheumatology Module 3.0 | 74.4 (16.2) | |
| Pain & hurt | 65.1 (28.0) | |
| Daily activity | 86.7 (17.6) | |
| Treatment | 76.9 (17.3) | |
| Worry | 65.2 (25.3) | |
| Communication | 69.6 (27.6) | |
| Simple Measure of Impact of Lupus Erythematosus in Youngsters | 62.3 (13.9) | |
| Effect on self | 56.2 (19.7) | |
| Limitations | 68.3 (15.6) | |
| Social | 64.1 (17.6) | |
| Burden of cSLE | 58.9 (18.3) | |
| Functional Disability Inventory | 8.4 (9.2) | |
| Childhood Health Assessment Questionnaire | 0.47 (0.6) | |
| Dressing/grooming | 0.36 (0.7) | |
| Arising | 0.46 (0.7) | |
| Eating | 0.33 (0.7) | |
| Walking | 0.29 (0.6) | |
| Hygiene | 0.32 (0.7) | |
| Reach | 0.64 (0.8) | |
| Play | 0.82 (0.9) | |
| Grip | 0.57 (0.8) | |
| Childhood Health Questionnaire P-50 | ||
| Psychosocial summary score | 50.4 (10.6) | |
| Physical summary score | 40.9 (12.5) | |
| Physical functioning | 50.4 (25.5) | |
| Bodily pain | 67.1 (25.8) | |
| General health perception | 53.5 (17.0) | |
| Role/social-physical | 82.8 (25.6) | |
| Role/social-emotional/behavioral | 80.4 (28.6) | |
| Parent impact-time | 76.1 (29.1) | |
| Parent impact-emotional | 63.4 (29.8) | |
| Self-esteem | 79.2 (19.8) | |
| Mental health | 78.5 (17.3) | |
| Behavior | 80.0 (17.7) | |
*
Systemic Lupus Erythematosus Disease Activity Index 2000
**
British Isles Lupus Activity Group index (A = 12, B = 8, C = 1, D = 0, E = 0)
†
Systemic Lupus international Collaborating Clinics/ACR Damage Index
‡
MD global; 10 point Likert scale, 0 = inactive disease
§
Other represents another option for completion of the questionnaires if the provided choices did not apply or there was an overlap of the choices.
All questionnaires are child self-report except Child Health Questionnaire P50 which is parent proxy-report