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Quality of life in children with systemic lupus erythematosus
L Nandini Moorthy1, Margaret Peterson, Karen B Onel
1UMDNJ/RWJ Medical School, Department of Pediatrics, MEB 396 A, New Brunswick, NJ 08903, USA. lnmoorthy@mac.com
Insights
Systemic lupus erythematosus (SLE) in children significantly impacts quality of life (QOL). More research and specific pediatric QOL tools are needed to fully understand and address these effects.
Area of Science:
- Pediatric Rheumatology
- Quality of Life Research
- Chronic Disease Management
Background:
- Systemic lupus erythematosus (SLE) is a chronic, multi-system autoimmune disease affecting children.
- While adult SLE's impact on quality of life (QOL) is studied, pediatric SLE QOL requires more attention.
- Understanding the comprehensive effects of pediatric SLE on children's well-being is crucial.
Purpose of the Study:
- To discuss the multidimensional nature of QOL in pediatric SLE.
- To explore the biopsychosocial implications of SLE in children.
- To highlight the need for specialized QOL measurement tools for pediatric SLE.
Main Methods:
- Literature review on QOL in chronic diseases, focusing on SLE.
- Discussion of generic and disease-specific QOL assessment scales.
- Analysis of factors influencing QOL measurement in pediatric populations.
Main Results:
- Pediatric SLE presents complex biopsychosocial challenges affecting children's QOL.
- Existing QOL instruments may not adequately capture the nuances of pediatric SLE.
- A gap exists in validated, SLE-specific QOL measures for children.
Conclusions:
- Pediatric SLE profoundly impacts multiple life domains, necessitating tailored QOL assessments.
- Development of SLE-specific pediatric QOL instruments is essential for accurate evaluation and improved patient care.
- Further research should focus on creating and validating these specialized tools.
Abstract:
Systemic lupus erythematosus (SLE) in children is a chronic multi-system disease with wide ranging effects on their quality of life (QOL). While SLE's impact on different arenas of life and well-being has been extensively examined in the adult population, its effect on children has not received adequate attention. This paper briefly discusses the multidimensional aspect of QOL, the biopsychosocial implications of SLE, factors complicating QOL measurement in the affected population, and the different generic and disease-specific scales used for measuring QOL and related constructs, and it also highlights the need for SLE-specific pediatric QOL instruments.
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