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Registry Study Shows Long View of Childhood Lupus Outcomes

(ACR Pediatrics 2014) A long-term study of more than 600 children with lupus finds that some adverse outcomes are less prevalent than expected from previous research.

What happens when childhood lupus grows up? "We all know that lupus is really bad, but we don't know what happens in the long term," said pediatric rheumatologist Deborah Levy MD of Toronto's Hospital for Sick Children, introducing her study at the American College of Rheumatology pediatric rheumatology symposium in Orlando FL.

She then proceeded to reveal what she does know now, after personally traveling, sometimes long distances, to review more than 700 records of Canadian children diagnosed with the condition.

Canada's one person-one card health system allowed a study that captured 6,629 person-years of followup for 622 patients, some born as long as 30 years ago.

Twenty-three patients died during the followup period, 6 of them within the first year after diagnosis. Among the other results:

•   Biopsy-proven nephritis affected 270 (43%) patients within the first 3 years of lupus diagnosis, and 20 developed end-stage renal disease (ESRD), after a mean of 17.5 years after lupus diagnosis. This ESRD rate is "quite low"  compared to other cohorts, Levy said. (Eight have had kidney transplants.)
•   There were only 6 myocardial infarctions, a number Levy said she found "very surprising."  By comparison, a study from the University of Toronto lupus clinic published late last year showed 6 coronary events among only 384 adult lupus patients, with a mean followup of less than 4 years.
•   29 (4.5%) were hospitalized for stroke
•   16 patients (2.5%) developed diabetes, with a mean age at onset of 19.6 years
•   22 (3.5%) needed joint replacements, including 32 hip replacements, at a mean age of 24.2
•   Rates of miscarriage (18%) and stillbirth (3.6%) were higher than expected in healthy women
•   14 malignancies arose in 13 patients, diagnosed at a mean age of 28 years. Nine of these were either cancers of the reproductive tract or lymphomas.