Many adolescents and young adults (AYAs) with rheumatic diseases, such as juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE), need teratogenic medicines to control their disease. Teratogenic medicines, like methotrexate and mycophenolate, can cause serious harm to a baby if someone becomes pregnant while taking them. This is especially important because unplanned pregnancy happens more often in AYAs than in any other age group.

CARRA works to improve the health and long-term outcomes of children and young people with rheumatic disease through research. However, my past research shows important gaps in care that directly affect this goal. Over one-third of young people taking these medicines did not know they could cause harm during pregnancy, and about half said they were never counseled about these risks. Gaps in use of birth control among sexually-active young people were also found. When young people are not informed, they cannot make safe choices about their health.

These data suggest risk of teratogen-exposed pregnancies among this age group, yet this risk has yet to be characterized beyond an institutional level. To guide further reproductive health research, it is vital to characterize this outcome at a national level.

This study will use 12 years of data from commercial and Medicaid insurance databases to measure how often pregnancy occurs during treatment with teratogenic medications in AYAs with rheumatic diseases such as JIA, SLE, inflammatory myositis, scleroderma, systemic sclerosis, and vasculitis. We will also utilize surveys to describe contraceptive use and sexual activity among AYAs in the CARRA network.

The results of this study will provide the first national population-level estimates of teratogen-exposed pregnancy among AYAs with rheumatic disease and define gaps in contraceptive care. I will use this foundational knowledge together with patient perspectives to submit a K23 to develop a targeted reproductive health intervention within pediatric rheumatology and transition clinics and to support my long-term career development as a physician scientist focused on reproductive health outcomes for AYAs with childhood-onset rheumatic disease. Through this work, I will work to support CARRA’s and the Arthritis Foundation’s goals of safer treatment and healthier futures for young people with rheumatic disease.