One of the most important decisions that a woman with a rheumatic disease can make is if and when she wants to conceive, given the potential for pregnancy-associated mortality and morbidity. However, critical gaps in knowledge, educational resources, and family planning care receipt prevent women from making informed decisions around pregnancy. Developed by Dr. Talabi, MyVoice is a de novo web-based, patient-centered decision aid that is currently in development. We expect that MyVoice will enhance the self-determination of female patients with rheumatic diseases and with childbearing potential by augmenting their ability to make informed decisions about if and/or when they wish to conceive a child and facilitating family planning care from their rheumatologists.
Compared to healthy women, women with rheumatic diseases have a substantially higher risk of adverse reproductive outcomes, and active rheumatic disease at conception and during pregnancy is a strong predictor of adverse reproductive outcomes. However, little is known about how upstream behavioral and health services variables, including patients’ reproductive knowledge and receipt of family planning care, may lead women to experience active rheumatic diseases at conception or during pregnancy. Identifying and intervening upon these modifiable variables (e.g., knowledge, family planning care receipt) may prevent adverse reproductive outcomes among these women. We are conducting a longitudinal study that assembles a cohort of women with rheumatic diseases to generate new knowledge about how gaps in patients’ reproductive knowledge and receipt of family planning care relate to long-term pregnancy and perinatal outcomes.
Funding:
K23, National Institute of Arthritis and Musculoskeletal and Skin Diseases, "Investigating Pathways to Optimal Reproductive Outcomes Among Women with Rheumatic Diseases" University of Pittsburgh, 2020-2025
R21, Eunice Kennedy Shriver National Institute of Child Health and Human Development , "Development of a novel, patient-centered measure of reproductive autonomy in the healthcare context" University of Pittsburgh 2022-2024
NIAMS K23AR075057
NIAMS K23AR075057