Background/Purpose: While patients and families of those with pediatric onset rheumatic diseases have keen interest and unaddressed worry about the impact of their rheumatic disease on their current and future reproductive health, few studies have specifically examined the concerns of young adults pertaining to reproductive health and how it relates to their disease.
Methods: Our focus group was conducted at the 2019 Arthritis Foundation Juvenile Arthritis Conference with goals of exploring knowledge, concerns, and preferences of young adult women with rheumatologic disease related to their reproductive health. Participants were recruited through advertisement of a confidential conference session on reproductive health, which was open to females age 18-25. After a presentation on reproductive health topics, participants were asked about the meaning of reproductive health, sources of information, and previous experiences discussing reproductive health topics with health care professionals. Interviews were audio recorded, transcribed, and analyzed using thematic analysis. Participants completed pre- and post-test surveys regarding these topics and to collect demographics.
Results: Twelve females participated in the focus group with an average age of 20 years. All participants had finished high school/obtained GED and most had completed some college. All were either single or dating with none engaged or married. Eleven carried a diagnosis of arthritis, 5 of whom had a secondary rheumatologic diagnosis, and 1 had dermatomyositis. Ten of 12 participants had at some point taken a teratogenic medication. Half were currently taking one. Seven endorsed having sex in the past 3 months. Of these, 1 endorsed no method of birth control (and notably was currently taking a teratogen), 1 used condoms, 3 used birth control pills, patch, or ring, and 2 used IUDs.
Focus group discussion revealed gaps in knowledge and concerns regarding aspects of reproductive health. Participants worried about effects of medications and disease on fertility and childbearing, ability to utilize contraceptives, and effects of disease and medication on periods. Many report negative experiences in discussing reproductive health with health care providers, including providing very little information, providing misinformation, and referring to other providers who also have little knowledge on the topic as it relates to rheumatology patients. In discussing preferences related to discussing reproductive health, participants report a desire to discuss these topics with their rheumatologist, though they acknowledge that other members of the care team may be better suited to take on this role. They prefer that these discussions start at an early age and that they be given time without parents present in which to discuss their concerns.
Conclusion: Gaps in knowledge and difficulties obtaining reproductive health information specific to rheumatic diseases are common in young adult rheumatology patients. Young adults have numerous concerns about their reproductive health but are dissatisfied with current resources. Rheumatologists and their team members have the ability to fill these gaps in patient care with appropriate education.
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