Health-related quality of life (HRQOL) and well-being at baseline (n = 98).
| HRQOL Measure | Normative Population Mean (SD) | SLE Mean (SD) | p†† |
|---|---|---|---|
| Child Health Questionnaire P50* | |||
| Physical functioning | 96.1 (13.9) | 81.3 (24.2) | 0.0001 |
| Role/social-physical | 93.60 (18.6) | 90 (17.5) | NS |
| General health perception | 73.0 (17.3) | 53.0 (17.4) | 0.0001 |
| Bodily pain | 81.70 (19.0) | 70.4 (25.8) | 0.0001 |
| Role/social-emotional/behavioral | 92.50 (18.6) | 88 (20.6) | 0.0367 |
| Parental impact-time | 87.80 (19.9) | 84.2 (24) | NS |
| Parental impact-emotional | 80.30 (19.1) | 47.2 (14.4) | 0.0001 |
| Self-esteem | 79.80 (17.5) | 77.2 (19.7) | NS |
| Mental health | 78.50 (13.2) | 77.6 (14.5) | NS |
| Behavior | 75.60 (16.7) | 78.4 (14.4) | NS |
| Family activities | 89.70 (18.6) | 79.8 (19.9) | 0.0001 |
| Family cohesion | 72.3 (21.6) | 71.3 (23.1) | NS |
| Physical summary score | 53.00 (8.8) | 41.8 (12) | 0.0001 |
| Psychosocial summary score | 51.20 (9.1) | 49.2 (6.6) | 0.0414 |
| Pediatric Quality of Life Inventory — Generic Score Scale31 | |||
| Parent proxy-report† | |||
| Physical function | 84.1 (19.7) | 73.3 (25) | 0.0001 |
| Emotional function | 81.2 (16.4) | 70.1 (21.2) | 0.0001 |
| Social function | 83.1 (19.7) | 80 (23.6) | NS |
| School function | 78.3 (19.6) | 70 (20.2) | 0.0002 |
| Summary Score | 82.3 (15.6) | 74.6 (16.7) | 0.0001 |
| Child self-report | |||
| Physical function | 87.8 (13.2) | 77.3 (21.9) | 0.0001 |
| Emotional function | 79.2 (18.0) | 75.9 (20.5) | NS |
| Social function | 85.0 (16.7) | 87.7 (15.6) | NS |
| School function | 81.3 (16.1) | 71.5 (19.6) | 0.0001 |
| Summary Score | 83.9 (12.5) | 78.1 (15) | 0.0001 |
| Pediatric Quality of Life Inventory — Rheumatology Module** | |||
| Parent proxy-report† | |||
| Pain & hurt | 73.1 (22.7) | 70.6 (24.4) | NS |
| Daily activity | 88.5 (17.1) | 90.9 (17.3) | NS |
| Treatment | 70.8 (18.6) | 82.7 (15.3) | 0.0001 |
| Worry | 89.6 (13.9) | 72.5 (24.3) | 0.0001 |
| Communication | 87.9 (16.3) | 79.5 (19.6) | 0.0032 |
| Summary Score | 82.0 (17.7) | 79.4 (14.3) | NS |
| Child self-report | |||
| Pain & hurt | 77.8 (24.2) | 75.6 (24.2) | NS |
| Daily activity | 95.6 (11.1) | 94.1 (11.6) | NS |
| Treatment | 82.1 (16.3) | 85.8 (14.8) | NS |
| Worry | 83.6 (18.5) | 70.9 (25) | 0.0011 |
| Communication | 82.9 (19.7) | 77.4 (22.6) | NS |
| Summary Score | 84.4 (18.0) | 80.8 (14.1) | NS |
↵* Source for CHQ-PF50: Table 18.1: CHQ-50 Scale Scores: National norm for a population sample of U.S. children (n = 391)18.
↵** Source for PedsQL Rheumatology Module norms in 56 children and 85 parents of children with juvenile rheumatoid arthritis21.
↵† Available from only 79 caregivers of children with cSLE.
↵†† Double-sided unpaired t-test for unequal and equal variances as applicable. NS: not significant.