Investigating Pathways to Optimal Reproductive Outcomes Among Women with Rheumatic Diseases

摘要 怀孕是风湿病妇女及其子女发病和死亡的主要原因； 因此，患有风湿病的女性可能会做出的最重要的决定之一是是否和/或何时 她想要怀孕。然而，我的基础工作发现，这些女性中的许多人都无法 关于怀孕的知情决定，因为他们的信息需求得不到满足。为了满足这一直接和 我将开发一种新颖的、面向患者的决策辅助工具，名为MyVoice，以帮助女性做出 风湿病临床环境中知情的妊娠决定和增加计划生育护理收据 (目标1)。我将在风湿病诊所试用我的语音，以评估其可行性、可接受性和实施情况 潜力(目标2)。这项工作将作为未来混合实施-有效性试验的基础 评估我的声音是否增加了妇女针对疾病的生殖知识和计划生育关怀 最终会改善其下游的生殖结果。 风湿性疾病妇女不良妊娠和围产儿结局的主要预测因素之一 在怀孕时和怀孕期间是活动性疾病。我之前的研究表明，有些女性可能 在怀孕期间经历活动性疾病，因为他们决定不坚持与怀孕相容的抗- 风湿性药物；他们担心他们的药物可能会对胎儿发育产生不利影响。在《目标3》中，我会 建立一组患有风湿病的年轻女性的纵向、探索性队列，以评估如何用药 依从性受到关键的时变和时不变上游风险因素的影响(例如，怀孕意图， 生殖知识、症状严重程度、计划生育护理收据)。在随后的R01研究中，我将 评估这些上游因素如何导致健康或不利的生育结果--因此，我的定位是 确定可提高生殖成果的干预措施的新目标。我将保持和扩大这一点 在我的职业生涯中作为额外假设和科学探究的来源。 80%的风湿病患者是女性，其中许多人处于生育年龄。 因此，我的目标与风湿病患者和从业者具有高度的临床相关性。这个K23 该项目将产生新的知识，可用于提高弱势群体的生殖成果 一群妇女和她们的孩子。这些目标还将帮助我通过以下方式实现我的职业目标 培养一套技能，包括以患者为中心的干预措施的开发、临床试验的进行、 实际实施、队列创建和高级增长曲线建模，以评估时变风险 我建议的队列中的因素。我的项目提供了两条截然不同但互为补充的路径的初步数据 到R01基金。我出色的指导团队将支持我成功完成目标和职业生涯 开发里程碑，以促进我向风湿学独立结果研究员的过渡。

ABSTRACT 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.