Pregnancy is a major cause of morbidity and mortality among women with rheumatic diseases and their children; thus, one of the most important decisions that a woman with a rheumatic disease may make is if and/or when she wishes to conceive. However, my foundational work has found that many of these women are unable to make informed decisions around pregnancy because their information needs are unmet. To meet this immediate and urgent patient need, I will develop a novel, patient-facing decision aid called MyVoice to help women to make informed pregnancy decisions and augment family planning care receipt in the rheumatology clinical setting (Aim 1). I will pilot MyVoice in rheumatology clinics to assess its feasibility, acceptability, and implementation potential (Aim 2). This work will serve as the foundation for a future hybrid implementation-effectiveness trial to evaluate if MyVoice increases women?s disease-specific reproductive knowledge and family planning care receipt, and ultimately improves their downstream reproductive outcomes. One of the major predictors of adverse pregnancy and perinatal outcomes among women with rheumatic diseases is active disease at the time of conception and during pregnancy. My prior work suggests that some women may experience active disease during pregnancy because they decide not to adhere to pregnancy-compatible anti- rheumatic drugs; they fear that their medications might adversely affect fetal development.
In Aim 3, I will develop a longitudinal, exploratory cohort of young women with rheumatic diseases to evaluate how medication adherence is influenced by key time-varying and time-invariant upstream risk factors (i.e., pregnancy intentions, reproductive knowledge, symptom severity, family planning care receipt). In a subsequent R01 study, I will assess how these upstream factors lead to healthy or adverse reproductive outcomes-- thus, positioning me to identify novel targets for interventions that may enhance reproductive outcomes. I will maintain and expand this cohort over my career to serve as a source of additional hypotheses and scientific inquiry. Eighty percent of patients with rheumatic diseases are women, many of whom are reproductive-age when they are diagnosed; thus, my Aims are highly clinically relevant to rheumatology patients and practitioners. This K23 project will generate new knowledge that may be used to enhance the reproductive outcomes of a vulnerable group of women and their children.
These Aims will also help me to meet my career objectives through development of a skill set that includes patient-centered intervention development, conduct of clinical trials, practical implementation, cohort creation, and advanced growth curve modeling to evaluate time-varying risk factors in my proposed cohort. My project provides preliminary data for two distinct but complementary paths to R01 funding. My outstanding mentorship team will support the successful completion of my Aims and career development milestones, to facilitate my transition to an independent outcomes researcher in rheumatology.
While reproductive-age women with rheumatic diseases and their children are at strikingly high risk of adverse pregnancy and perinatal outcomes, little is known about how patient- and health services-level variables (e.g., low patient knowledge, inadequate health services receipt, nonadherence to anti-rheumatic drugs) contribute to these outcomes. As women who make informed pregnancy decisions and have the ability to execute these decisions likely experience better reproductive outcomes, I will develop a novel clinical intervention to enhance pregnancy decision-making and planning in the rheumatology clinical setting. I will also develop a prospective longitudinal cohort of young women with rheumatic diseases to advance understanding about how reproductive knowledge, family planning care receipt, and other key patient and health services variables change over time and predict adherence to anti-rheumatic drugs? which we hypothesize is a critical intermediate factor in the pathway to adverse pregnancy and perinatal outcomes.