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

点击翻译按钮获取中文摘要

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.