Background/Purpose: Prior studies demonstrate low levels of knowledge and reported counseling regarding teratogenicity among AYAs with rheumatic disease. The aim of this study was to explore the teratogenicity counseling experiences of AYAs on teratogenic medications treated in pediatric rheumatology clinics and explore on how to best address their needs in teratogenicity counseling.

Methods: AYAs age 14-21 years, assigned female at birth, with a rheumatic disease, and taking teratogenic medications were recruited from pediatric rheumatology clinics in Indiana to participate in semi structured interviews in 2024 assessing teratogenicity knowledge, counseling experiences, and recommendations to improve counseling in the clinical setting. Interviews were recorded and transcribed by a professional transcription service. Data were analyzed in Dedoose by two of the authors (BH, EP) who engaged in inductive initial coding to identify themes from the data, resolving differences through discussions until theoretical saturation was reached. After identifying key themes and creating a codebook ,categories were developed through exploration of how key concepts fit together. Analysis proceeded using constant comparison analysis, the standard analysis technique utilized in grounded theory as described by Charmaz (2008). Hypothesized relationships among categories were explored through reexamination of the data using an iterative approach. We then reanalyzed the transcripts to perform a priori coding to develop and confirm our theoretical framework.

Results: 21 AYAs with a variety of rheumatic diseases participated in interviews. Participants were on average 16.3 years of age. 29% knew the reproductive effects of their medication, 24% had limited knowledge, and 43% no knowledge. 43% reported counseling on teratogenicity by their rheumatologist.The key theme that emerged is teratogenicity counseling is seen as receiving bad news due to AYAs’ interpretation of this information to mean it will be challenging to plan a future pregnancy. This was rooted in weighing the challenges of navigating a disease they perceive will be poorly controlled without use of their current teratogenic medication. Notably, most participants frame teratogenicity information in terms of their future family planning with few recognizing the risk of unintended pregnancy.This finding drew us to the SPIKES (Setting, Perception, Invitation, Knowledge, Empathy, Strategy) framework for breaking bad news, which further mapped onto central themes from AYA recommendations on teratogenicity counseling. We used this model and adapted it for AYAs receiving news on teratogenicity based on subsequent themes that emerged to produce the SPIKES-STAR framework for teratogenicity counseling. This model includes the following additions: Stigma reduction, Tailoring, Agency, and Revisiting counseling.

Conclusion: We present a novel framework for teratogenicity counseling of AYAs on teratogenic medications treated in pediatric rheumatology clinics. Next steps include development of a model for implementation in clinical practice, evaluation of model, and application to the broader population of AYAs with chronic disease on teratogenic medication.

Participant Characteristics

SPIKE STAR Teratogenicity Counseling Framework

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-novel-framework-for-teratogenicity-counseling-for-adolescents-and-young-adults-ayas-with-rheumatic-disease-on-teratogenic-medications/