Background/Purpose: The diagnosis of a pediatric rheumatic disease comes with worries for both parents and patient; one that may be overlooked is the impact on long- and short- term reproductive health, including the impact of the disease and treatment on fertility, pregnancy, and contraception. Little exploration has been done to assess the reproductive health needs and concerns of this population. We sought to identify areas of concern regarding reproductive health, topics in which pediatric patients/parents need more information, barriers to current knowledge, current sources of knowledge, and suggestions for ways to distribute information.

Methods: Females 15-20 years old diagnosed with any rheumatic condition and their parents were recruited from a children’s hospital rheumatology clinic. Participants completed a survey collecting demographics, diagnosis, rheumatic medications, sexual activity, and contraception use and engaged in one of three focus groups: two age-specific patient groups and one parent group. Each audio-recorded focus group was professionally transcribed and coded using constant comparative analysis.

Results: A total of 9 patients and 7 parents participated. The majority of patients were Caucasian (n=7; 78%) and carried the diagnosis of JIA (n=6; 67%), with a small representation of systemic lupus (n=2; 22%) and vasculitis (n=1; 11%). Two-thirds of participants were on teratogenic medications. 11% of patients were sexually active, 55% of total subjects were using contraception. In the parent group, over 50% had some level of college education and household incomes over the median national average.

All focus groups expressed concerns about the interaction of rheumatic medications with contraception and fertility. Worry surrounding the effect of rheumatic conditions and medications on fertility, repercussions of future pregnancy on patients’ and potential offspring’s health, and motherhood was widespread. Participants reported varied levels of reproductive health education, ranging from none to in-depth discussions with fertility specialists, with a general agreement of dissatisfaction with currently available resources and the attention to rheumatic disease and reproductive health. Overall, rheumatology providers were not named by any of the focus groups as a consistent resource for reproductive health information.

Conclusion: Reproductive health is an important topic to female adolescents and young adults with rheumatic diseases, and their parents. The most prominent concern for all groups was medications’ impact on many aspects of reproductive health. Young women and their parents were dissatisfied with the availability, quantity, and quality of reproductive health information related to pediatric rheumatic disease. Rheumatologists should re-consider our role in the reproductive health discussion, and seize the opportunity to improve the communication and education of this issue in our clinical practice.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/reproductive-health-awareness-and-needs-assessment-of-parents-female-adolescents-and-young-adults-with-pediatric-rheumatic-diseases/