TY - JOUR
T1 - Health-related quality of life and its relationship to patient disease course in childhood-onset systemic lupus erythematosus
AU - Brunner, Hermine I.
AU - Higgins, Gloria C.
AU - Wiers, Kristina
AU - Lapidus, Sivia K.
AU - Olson, Judyann C.
AU - Onel, Karen
AU - Punaro, Marilynn
AU - Ying, Jun
AU - Klein-Gitelman, Marisa S.
AU - Seid, Michael
N1 - Copyright:
Copyright 2009 Elsevier B.V., All rights reserved.
PY - 2009/7
Y1 - 2009/7
N2 - Objective. To (1) estimate the health-related quality of life (HRQOL) of children with childhood-onset systemic lupus erythematosus (cSLE) and compare it to that of normative cohorts; (2) assess the relationship of HRQOL with cSLE disease activity and damage; and (3) determine the effects of changes of disease activity on HRQOL. Methods. Patients with cSLE (n = 98) followed every 3 months completed HRQOL measures, the Pediatric Quality of Life Inventory Generic Core scale (PedsQL-GC), the Rheumatology Module (PedsQL-RM), and the Child Health Questionnaire (CHQ). The British Isles Lupus Activity Group Index (BILAG) was used to measure organ-system-specific disease activity. Physicians rated the course of cSLE between visits. Results. At baseline, mean (standard deviation, SD) score [parent report] of the PedsQL-GC and the PedsQL-RM was 75 (17) and 79 (14), respectively; the mean (SD) of the CHQ physical summary score (CHQ-PHS) was 49 (7) and that of the CHQ psychological summary score was 42 (12). Higher BILAG scores, especially in the general, musculoskeletal, neurological, and vascular, but not the mucocutaneous, renal, cardiovascular, or hematological BILAG domains, were associated with a significantly lower HRQOL. Patients with damage had lower HRQOL than those without damage. All HRQOL measures included were at most modestly responsive to clinically important changes with cSLE. Conclusion. HRQOL with cSLE is significantly lower than that reported in healthy populations. Organ-specific involvement with cSLE has a differential effect on HRQOL. Higher disease activity and damage are associated with significantly lower HRQOL as measured by the PedsQL-RM and the CHQ-PHS, and worsening of cSLE leads to a further decline. The Journal of Rheumatology
AB - Objective. To (1) estimate the health-related quality of life (HRQOL) of children with childhood-onset systemic lupus erythematosus (cSLE) and compare it to that of normative cohorts; (2) assess the relationship of HRQOL with cSLE disease activity and damage; and (3) determine the effects of changes of disease activity on HRQOL. Methods. Patients with cSLE (n = 98) followed every 3 months completed HRQOL measures, the Pediatric Quality of Life Inventory Generic Core scale (PedsQL-GC), the Rheumatology Module (PedsQL-RM), and the Child Health Questionnaire (CHQ). The British Isles Lupus Activity Group Index (BILAG) was used to measure organ-system-specific disease activity. Physicians rated the course of cSLE between visits. Results. At baseline, mean (standard deviation, SD) score [parent report] of the PedsQL-GC and the PedsQL-RM was 75 (17) and 79 (14), respectively; the mean (SD) of the CHQ physical summary score (CHQ-PHS) was 49 (7) and that of the CHQ psychological summary score was 42 (12). Higher BILAG scores, especially in the general, musculoskeletal, neurological, and vascular, but not the mucocutaneous, renal, cardiovascular, or hematological BILAG domains, were associated with a significantly lower HRQOL. Patients with damage had lower HRQOL than those without damage. All HRQOL measures included were at most modestly responsive to clinically important changes with cSLE. Conclusion. HRQOL with cSLE is significantly lower than that reported in healthy populations. Organ-specific involvement with cSLE has a differential effect on HRQOL. Higher disease activity and damage are associated with significantly lower HRQOL as measured by the PedsQL-RM and the CHQ-PHS, and worsening of cSLE leads to a further decline. The Journal of Rheumatology
KW - Childhood-onset SLE
KW - Children
KW - Health-related quality of life
KW - Pediatric SLE
KW - Quality of life
KW - Systemic lupus erythematosus
UR - http://www.scopus.com/inward/record.url?scp=67650496625&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=67650496625&partnerID=8YFLogxK
U2 - 10.3899/jrheum.081164
DO - 10.3899/jrheum.081164
M3 - Article
C2 - 19487266
AN - SCOPUS:67650496625
SN - 0315-162X
VL - 36
SP - 1536
EP - 1545
JO - Journal of Rheumatology
JF - Journal of Rheumatology
IS - 7
ER -