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.
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.
Authors: Rina Mina; Emily von Scheven; Stacy P Ardoin; B Anne Eberhard; Marilynn Punaro; Norman Ilowite; Joyce Hsu; Marisa Klein-Gitelman; L Nandini Moorthy; Eyal Muscal; Suhas M Radhakrishna; Linda Wagner-Weiner; Matthew Adams; Peter Blier; Lenore Buckley; Elizabeth Chalom; Gaëlle Chédeville; Andrew Eichenfield; Natalya Fish; Michael Henrickson; Aimee O Hersh; Roger Hollister; Olcay Jones; Lawrence Jung; Deborah Levy; Jorge Lopez-Benitez; Deborah McCurdy; Paivi M Miettunen; Ana I Quintero-del Rio; Deborah Rothman; Ornella Rullo; Natasha Ruth; Laura E Schanberg; Earl Silverman; Nora G Singer; Jennifer Soep; Reema Syed; Larry B Vogler; Ali Yalcindag; Cagri Yildirim-Toruner; Carol A Wallace; Hermine I Brunner Journal: Arthritis Care Res (Hoboken) Date: 2012-03 Impact factor: 4.794
Authors: Hermine I Brunner; Marisa S Klein-Gitelman; Gloria C Higgins; Sivia K Lapidus; Deborah M Levy; Anne Eberhard; Nora Singer; Judyann C Olson; Karen Onel; Marilynn Punaro; Laura Schanberg; Emily von Scheven; Jun Ying; Edward H Giannini Journal: Arthritis Care Res (Hoboken) Date: 2010-06 Impact factor: 4.794
Authors: Andrea Knight; Amy J Kogon; Matthew B Matheson; Bradley A Warady; Susan L Furth; Stephen R Hooper Journal: J Pediatr Date: 2017-07-19 Impact factor: 4.406
Authors: Tricia S Williams; Cynthia Aranow; Gail S Ross; Alexandra Barsdorf; Lisa F Imundo; Andrew H Eichenfield; Philip J Kahn; Betty Diamond; Deborah M Levy Journal: Arthritis Care Res (Hoboken) Date: 2011-08 Impact factor: 4.794
Authors: Anna Carmela P Sagcal-Gironella; Catherine M T Sherwin; Rommel G Tirona; Michael J Rieder; Hermine I Brunner; Alexander A Vinks Journal: Clin Ther Date: 2011-10-07 Impact factor: 3.393
Authors: R Mina; M S Klein-Gitelman; S Nelson; B A Eberhard; G Higgins; N G Singer; K Onel; L Tucker; K M O'Neil; M Punaro; D M Levy; K Haines; J Ying; H I Brunner Journal: Lupus Date: 2014-10-21 Impact factor: 2.911