Cognitive impairment in children and adolescents with systemic lupus erythematosus (SLE) can affect intelligence, academic achievement, arithmetic, reading comprehension, learning, visual memory and complex problem solving ability. In this prospective two-center study, we examined childrens (and adolescents) and parents perception of the impact of SLE on school; the relationship between child and parent reports on school-related issues; and the relationship between health-related quality of life (HRQOL) and school-related issues. Patients aged 9-18 years with SLE and their parents completed corresponding child and parent reports of the SLE-specific HRQOL scale, Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY ©), and PedsQLTM generic and rheumatology modules. Patients also completed questions related to school attendance and performance. Qualified physicians assessed SLE activity, damage and severity. Forty-one patients (73% girls) with SLE with mean age of 15 ± 3 years and 32 parents participated. Mean school domain scores for child and parent reports of the PedsQLTM generic report were lower compared with total and subscale scores. Patients reported difficulty with schoolwork, had problems with memory and concentration, and were sad about the effect of SLE on schoolwork and attendance. Moderate to strong correlations were found between child and parent reports on school-related items from all questionnaires. Eighty-three percent of patients felt that they would have done better in school if they did not have SLE. Moderate correlations (r = 0.3-0.4) were found between SMILEY © total score and the following items: satisfaction with school performance, interest in schoolwork, remembering what was learned, and concentrating in class. Patients on intravenous chemotherapeutic medications missed more school days (p < 0.05) compared with patients on oral medications. Also, patients with a greater number of missed school days had increased disease activity (p = 0.008). SLE and activities related to caring for the disease clearly impose a burden on childrens school attendance and performance. School-related activities can have a significant impact on HRQOL in children and adolescents with SLE. Detailed examination of the impact of SLE on attendance and the various aspects of school performance will enable us to formulate interventions in school for these children and adolescents.
All Science Journal Classification (ASJC) codes
- Quality of life