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Reproductive Health Concerns in Pediatric Onset Rheumatic Diseases: Filling the Needs of Patients and Parents Through Provider Education

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Reproductive health is an important facet of one’s overall health. Patients and their families have keen interest and unaddressed worry about the impact of their rheumatic disease and its treatment on their current and future reproductive health. The American College of Rheumatology (ACR) has recognized the importance of reproductive health and is on the eve of publishing their first guidelines addressing this issue. These have been created with the adult patient in mind and may not adequately address the topic for pediatric rheumatologists or their patients. To address reproductive health in pediatric onset rheumatic diseases, our first steps will be to determine the scope of the problem. Our preliminary focus groups identified future fertility potential, rheumatologic medication safety, and the complex nature of sexual relationships with a chronic disease as particularly important concerns and indicated that these were not being addressed by their pediatric rheumatologist or other health care team members. We will solicit teen and young adult patient and parent input on the most important components of reproductive health that they want addressed by their pediatric rheumatologist. At the same time, we will be to assess pediatric rheumatologists and other rheumatology care team members’ current knowledge-base, comfort level, and current resources within a range reproductive health topic. Finally, we will build an educational resource, components derived from the input of patients and families of those with any pediatric onset rheumatic disease, enabling pediatric rheumatologists to confidently and competently deliver the reproductive health guidance that our patients desire and deserve. At the completion of this project, we will disseminate this educational resource throughout the CARRA Network.

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