Childhood-onset Lupus Brings Distinct Challenges at Each Phase of Life

Utilizing multiple health administrative databases, we have assembled and linked a cohort of 620 patients with cSLE diagnosed in Ontario over the past 30 years. We are examining long-term outcomes including rates of hospitalizations, renal failure, joint replacements (for avascular necrosis), pregnancy outcomes, and mortality. Early results suggest higher rates of serious cardiac events (angina, myocardial infarction, and stroke) than we would have expected in these predominantly young women (currently aged 30 to 45 years), with more definitive results available by the end of this year.

Since early mortality from cSLE is low, and management of major organ involvement is possible with newer and less toxic drugs and drug regimens, we need to focus on improving patients’ long-term outcomes. Several factors are at play, including: 1) successful transition of the adolescent to an independent young adult able to manage their disease in partnership with their adult care provider(s); 2) educational and employment opportunities; and 3) access to medical care with adequate insurance coverage, which is frequently tied to employment. Ongoing collaborative research will help provide the necessary tools to these adolescents and young adults, while continued drug discovery and inclusion of cSLE patients in clinical trials will hopefully improve outcomes and lessen disease burden and permanent damage from this chronic disease.

Dr. Levy is a pediatric rheumatologist at the Hospital for Sick Children in Toronto, Ontario, Canada.

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