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PReS-FINAL-2295: Correlations of health related quality of life reports completed by children with lupus and parents

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Pediatric Rheumatology201311 (Suppl 2) :P285

  • Published:


  • Systemic Lupus Erythematosus
  • Domain Score
  • Generic Scale
  • Child Report
  • Multicenter Cohort


Children with chronic diseases and parents often perceive disease impact differently. We previously found moderate correlations between child-parent reports of Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY).


To examine the correlation between child and parent health-related quality of life (HRQOL) scores in an expanded sample from the United States (US) and Latin America (LA).


A cross-sectional multicenter cohort of children (≤ 18 years) with systemic lupus erythematosus (SLE) and parents completed the specific translation of SMILEY and Pediatric Quality of Life Inventory (PedsQL) Generic scales. Higher scores indicate better HRQOL for both scales. Independent and paired samples t-test were used to compare scores. We examined Spearman's correlation (rho) and intra-class correlation (ICC) between child and parent scores.


Mean child- (LA 67 ± 15, n = 123; US 64 ± 14, n = 162) and parent-report (LA 64 ± 16, n = 129; US 62 ± 15, n = 148) total SMILEY scores were higher for LA subjects. Some SMILEY domain scores (p < 0.05 for Effect of Self-child-report; and Social-child- and parent-reports); and child-report PedsQL total scores were also higher for LA subjects. US and LA child-report scores of SMILEY and PedsQL were higher (p < 0.05) compared to corresponding parent-report scores. For child-parent pairs, correlatons ranged from 0.3-0.7 (table 1), with lowest correlation in the Social domain.
Table 1

Child-parent correlations from US and LA (p values for rho and ICC <0

Scale and domains

US-rho (n); ICC

LA- rho (n); ICC

SMILEY total

0.5 (145); 0.5

0.5 (122); 0.5

Effect on self



Burden of SLE

0.6 (144); 0.6

0.5 (145); 0.5

0.4 (145); 0.4

0.5 (144); 0.5

0.5 (122); 0.5

0.6 (122); 0.6

0.3 (122); 0.3

0.4 (121); 0.5

Peds QL Generic total

0.7 (138); 0.6

0.7 (100); 0.6


As shown previously, children and parents may have varying attitudes about the impact of SLE on HRQOL. Because parents tend to overestimate disease impact, it remains critical to use both parent and child reports while assessing HRQOL.

Disclosure of interest

L. Moorthy Grant/Research Support from: Arthritis Foundation Investigator Award supported this study, E. Roy: None declared, M. Peterson: None declared, A. Hassett Grant/Research Support from: Bristol-Myers Squibb (2013) Pfizer (2012) (not related to current study), R. Cuttica: None declared, C. Magalhaes: None declared, J. Sato: None declared, S. Appenzeller Grant/Research Support from: Fundacao de Amparo de Pesquisa do Estado de Sao Paulo (FAPESP) 2008/02917-0, Conselho Nacional de Desenvolvimento de Pesquisa CNPQ (471343/2011-0, 302205/2012-8)(not related to current study), R. Marini: None declared, C. Len: None declared, M. Vasco: None declared, S. Oliveira Grant/Research Support from: Roche and Novartis (not related to current study), M. Rodrigues: None declared, R. Almeida: None declared, F. Sztajnbok: None declared, L. Campos: None declared, A. Jesus: None declared, C. Silva: None declared, E. Faugier: None declared, L. Cobian: None declared, A. Quintero-Del-Rio: None declared, A. Adams Grant/Research Support from: Spoke once for Abbot in 2009 (not related to the current study), L. Barinstein: None declared, E. Chalom: None declared, K. Onel: None declared, J. Lopez-Benitez: None declared, L. Ray: None declared, K. Haines: None declared, P. Hashkes: None declared, V. Cartwright: None declared, D. Kingsbury: None declared, N. Singer: None declared, I. Tomanova-Soltys: None declared, S. Hong: None declared, A. Reiff: None declared, T. Lehman: None declared.

Authors’ Affiliations

Pediatrics, Robert Wood Johnson Medical School-Univ of Medicine and Dentistry of NJ, New Brunswick, NJ, USA
Hosp. for Special Surgery, New York, NY, USA
Anesthiology, Univ. of Michigan, Ann Arbor, MI, United States
Hosp. Pedro de Elizalde, Buenos Aires, Argentina
Pediatrics, Univ. Estadual Paulista (UNESP), Sao Paulo, Brazil
Faculty of Medical Science, State Univ. of Campinas, Campinas, Brazil
Pediatrics, Faculty of Medical Science, State Univ. of Campinas, Campinas, Brazil
Pediatrics, Universidade Federal de Sao Paulo (UNIFESP)/Escola Paulista de Medicina (EPM), Sao Paulo, Brazil
Pediatrics, Univ. Federal do Rio de Janeiro, Instituto de Puericultura e Pediatria Martagao Gesteira, University City, Rio de Janeiro, Brazil
Pediatrics, Univ. do Estado do Rio de Janeiro, Rio de Janeiro, Brazil
Pediatrics, Children's Institute, Faculdade de Med da Univ. de Sao Paulo, Sao Paulo, Brazil
Hosp. Infantil de México Federico Gómez, Mexico City, Mexico
San Jorge Children's Hosp., Santurce, Puerto Rico
Mount Sinai Hosp, New York City, NY, USA
St. Barnabas Medical Center, Livingston, NJ, USA
Univ of Chicago, Chicago, IL, USA
Centro Medico La Costa, Asuncion, Paraguay
Univ. of Mississippi Med Center, Jackson, MS, USA
HUMC, Hackensack, NJ, USA
Cleveland Clinic Foundation, Cleveland, OH, USA
Legacy Emanuel Children's Hospital, Portland, OR, USA
Metro Health Case Western Reserve Univ., Cleveland, OH, USA
Winthrop University Hosp., Woodmere, NY, USA
Univ. of Iowa, Iowa City, IA, USA
Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA, USA


© Moorthy et al.; licensee BioMed Central Ltd. 2013

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