The HOP-STEP Intervention: Improving Maternal Health in Women with Lupus through Improved Pregnancy Prevention and Planning

摘要： 尽管发表了指南，但系统性红斑狼疮患者的怀孕预防和规划 系统性红斑狼疮(SLE)往往不符合标准，导致妇女及其后代终身患病。系统性红斑狼疮是一个多系统 自身免疫性疾病，主要影响年轻女性，最严重的是有色人种女性，她们遭受的痛苦更高 肾功能衰竭、死亡率和严重妊娠并发症的比率。意外怀孕的风险尤其大。 由于活动性系统性红斑狼疮和治疗方法的差异，妊娠损失和早产率增加了一倍以上 摘自美国风湿病学会生殖健康指南。有效的怀孕预防和 计划对于避免悲惨的妊娠并发症是必不可少的，但目前风湿病护理方面的差距阻碍了 患有系统性红斑狼疮的妇女无法获得她们计划安全怀孕所需的准确和个性化的指导。 长期目标是使所有患有系统性红斑狼疮的妇女在享受高水平的同时保持健康的怀孕 随着他们建立他们想要的家庭，他们的心理和身体健康。为了填补提供商知识中的现有空白， 技能和实践，我们通过教育创造了SLE妊娠期简单的门诊健康结局 提供方(跳跃式)干预。这一创新的干预措施为指导方针创造了常规机会- 将生殖健康保健调整为1。)重构风湿病临床环境，收集患者-再融资 携带避孕用具和怀孕意向，然后2。)通过Dis-Dis实现准确和个性化的护理- Cussion Guide和3)向合作的医生提供信息传递。在这样做的时候，干预 确保为所有SLE妇女提供公平的、以患者为中心的生殖保健。工作假说 为风湿病提供者配备这种干预措施将增加患有SLE的女性 接受有效的怀孕预防和计划护理，这将导致更多的计划怀孕和 减少母亲和婴儿的悲惨结局。这笔赠款的目的是为一个多中心做准备 试行先试后试的跳跃式干预措施及其潜力 对产妇结局的影响。由于目前系统性红斑狼疮治疗和妊娠结局方面存在差异， 干预措施将在以黑人和低收入人口为主的人群中试行。循证实施者- 多中心试验的选择策略将根据每种策略对公平的影响 覆盖范围、有效性、采用率和忠诚度。这项试点试验将伴随着对怀孕时间的分析 关于系统性红斑狼疮妇女的孕产妇健康，首先是在100多个怀孕的现有数据中，然后是怀孕中 在飞行员干预试验中发生的情况。该项目将由两个国家社区合作小组指导， 一个由患有SLE的妇女组成，另一个由风湿科医生、妇产科医生和初级保健提供者组成。 艾尔斯。在这项研究完成后，我们将为干预的多中心试验做准备，该试验的重点是 公平改善保健、孕产妇健康和妊娠结局。这项研究是下一步，也是至关重要的一步。 使患有系统性红斑狼疮的妇女能够有效地计划怀孕，从而使妇女、婴儿和家庭更健康。

ABSTRACT: Despite published guidelines, pregnancy prevention and planning for women with systemic lupus erythematosus (SLE) is often sub-standard, leading to life-long morbidity for women and their offspring. SLE is a multi-system autoimmune disease that primarily affects young women, and most severely, women of color, who suffer higher rates of renal failure, death, and severe pregnancy complications. Unplanned pregnancies are particularly risky with rates of pregnancy loss and preterm birth more than doubled due to active SLE and treatment divergent from the American College of Rheumatology Reproductive Health Guidelines. Effective pregnancy prevention & planning is essential to avoid tragic pregnancy complications, but gaps in current rheumatology care prevent women with SLE from receiving the accurate and personalized guidance they need to plan a safe pregnancy. The long-term goal is to enable all women with SLE to maintain a healthy pregnancy while enjoying a high level of mental and physical health as they build the families they want. To fill the existing gap in provider knowledge, skills, and practice, we created the simple in-clinic Healthy Outcomes in Pregnancy with SLE Through Education of Providers (HOP-STEP) intervention. This innovative intervention creates routine opportunities for guideline- aligned reproductive health care by 1.) restructuring the rheumatology clinic environment to collect patient-re- ported contraceptive use and pregnancy intention, then 2.) enabling accurate and personalized care with a Dis- cussion Guide, and 3.) providing informative hand-offs to collaborating physicians. In doing so, the intervention insures equitable, patient-centered reproductive care is provided to all women with SLE. The working hypothesis is that equipping rheumatology providers with this intervention will increase the frequency that women with SLE receive effective pregnancy prevention and planning care, which will result in more planned pregnancies and decrease tragic outcomes for both mother and baby. The objective of this grant is to prepare for a multi-center trial of the HOP-STEP intervention by fitting and then piloting its implementation and measuring its potential impact on maternal outcomes. Because of existing disparities in current SLE care and pregnancy outcomes, the intervention will be piloted within a predominantly Black and low-income population. Evidence-based implemen- tation strategies for the multi-center trial will be selected based on the impact each strategy has on the equity of reach, effectiveness, adoption, and fidelity. This pilot trial will be accompanied by analyses of pregnancy timing on maternal health among women with SLE, first in existing data from over 100 pregnancies, then in pregnancies that occur in the pilot intervention trial. The project will be guided by two national Community Collaborator teams, one comprised of women living with SLE and the other with rheumatologists, OB/GYN, and primary care provid- ers. At the completion of this study, we will be prepared for a multi-center trial of the intervention that focuses on equitable improvements in care, maternal health, and pregnancy outcomes. This study is the next, essential step to allow women with SLE to effectively plan their pregnancies, leading to healthier women, babies, and families.