BOSTON — Current assessment tools aimed at capturing quality of life information on children with systemic lupus erythematosus (SLE) may be considerably off the mark, according to preliminary findings from a cross-sectional study of school absenteeism.
Having lupus may be a pretext to take the day off. Or the instruments that gauge an individual's disease activity may be too crude to quantify the nuances of physical and emotional health that go into the decision to keep a child home from school, said L. Nandini Moorthy, M.D., chief of the division of pediatric rheumatology at Robert Wood Johnson Medical School in New Brunswick, N.J.
Dr. Moorthy and associates studied 24 SLE patients (average age 15/grade 9) using child and parent versions of four standard scales of disease and quality of life, as well a new scale called SMILEY, which researchers are currently testing in pediatric SLE. Dr. Moorthy reported the findings in a poster during the annual meeting of the Federation of Clinical Immunology Societies (FOCIS).
They found that over the previous 30 days, 10 of 24 children missed an average of 3 days of school. On an average of 3 of the previous 30 days, children were “too ill to play” and also “needed someone.”
Missed school days moderately correlated with parents' perception of their children's quality of life (Pediatric Quality of Life Inventory), but did not correlate with any of the child-reported scores. There was little correlation between school absence and lupus disease activity and damage.
“This is a preliminary study,” Dr. Moorthy noted. The cohort is small, while the range and duration of disease activity was broad. The next step is to expand the cohort.
“We need to tease out what missing school really means to [these children], what it means to get good grades versus bad grades.”
And then, she said, the study will “get at the root of” school absence in children living with a debilitating disease.