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Health Related Quality of Life in Juvenile-Onset Systemic Lupus Erythematosus: A Questionnaire-Based Study

Riham Eid1, Ayman Hammad2, Mai S Korkor2

  • 1Pediatric Nephrology Unit, Faculty of Medicine, Mansoura University Children's Hospital, Mansoura University, Mansoura, 35561, Egypt. rihameid@mans.edu.eg.

Maternal and Child Health Journal
|June 12, 2023
PubMed

Insights

Egyptian children with systemic lupus erythematosus (SLE) experience lower health-related quality of life (HRQOL). Disease activity and cumulative steroid use significantly impact HRQOL, highlighting the need for effective disease management.

Area of Science:

  • Pediatric Rheumatology
  • Quality of Life Research
  • Clinical Assessment Tools

Background:

  • Systemic lupus erythematosus (SLE) significantly impacts children's health-related quality of life (HRQOL).
  • Evaluating HRQOL in pediatric SLE is crucial for comprehensive patient care.
  • Standardized tools are needed to assess HRQOL in diverse populations.

Purpose of the Study:

  • To evaluate HRQOL in Egyptian children diagnosed with SLE.
  • To compare HRQOL using three distinct assessment tools: PedsQL™ 4.0 Generic Core Scales (GCS), PedsQL™ 3.0 Rheumatology Module (PedsQL3-RM), and the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY).
  • To identify factors associated with diminished HRQOL in this cohort.

Main Methods:

  • A questionnaire-based study involving 100 Egyptian children with SLE.
  • HRQOL assessed using PedsQL™ 4.0 GCS, PedsQL3-RM, and SMILEY.
  • Disease activity measured by SLE disease activity index (SLEDAI) and chronic damage by SLE International Collaborating Clinics/American College of Rheumatology Damage Index (SDI).

Main Results:

  • Pediatric SLE patients demonstrated significantly lower HRQOL scores across most PedsQL™ 4.0 GCS and PedsQL3-RM domains compared to normative data.
  • The SMILEY tool indicated a low overall HRQOL, with "Burden of SLE" scoring the lowest.
  • Factors such as longer disease duration, higher cumulative steroid doses, elevated SLEDAI and SDI scores, and obesity were strongly associated with poorer HRQOL outcomes across all three instruments (p < 0.001).

Conclusions:

  • The Arabic versions of PedsQL™ 4.0 GCS, PedsQL3-RM, and SMILEY are user-friendly and interpretable for Arabic-speaking populations, suitable for frequent HRQOL monitoring in SLE children.
  • Effective management of SLE disease activity and minimizing steroid dosage are paramount for enhancing the quality of life in children with SLE.
  • These validated tools can aid clinicians in monitoring and improving the HRQOL of pediatric SLE patients.
Abstract

Keywords:
ChildrenEgyptLupusQuality of life

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