Preeclampsia Registry Research Helps to Understand the Patient Journey

March 8, 2022 – Melbourne, FL – A study published in BMJ Open describes the Patient Journey as it relates to awareness, communication, and involvement with decision making during experiences with preeclampsia, a potentially life-threatening hypertensive disorder of pregnancy. Preeclampsia is a hypertensive disorder of pregnancy that can affect many organs and occur in about 5% of all pregnancies and is a leading cause of maternal and infant illness and death worldwide. (See our Illustrated Patient Journey here.)

“This study presented a unique opportunity to ‘map’ how patients who are diagnosed with preeclampsia move through the experience of diagnosis, management, treatment, and postpartum physical and mental recovery,” said Preeclampsia Foundation CEO and study co-author Eleni Tsigas. “The study aimed to identify common pain points across the shared patient experience that could then be used by healthcare providers to improve outcomes.”

Preeclampsia Registry participants were asked to respond to a survey to measure their awareness of preeclampsia and symptoms, timing, and type of information on preeclampsia received, involvement in decision making regarding medical care, mental/emotional impact of the preeclampsia-complicated pregnancy and impact on future pregnancy planning.

“As clinicians, we see medical conditions through our own lens,” said senior author Ellen Seely, MD, the director of clinical research in the Division of Endocrinology, Diabetes and Hypertension at the Brigham and Women’s Hospital and professor at Harvard Medical School. “We were interested in having women tell us about their experience. When you want to understand how a disease affects the patient, you have to ask the patient.”

Based on responses from 833 women surveyed within the Preeclampsia Registry, researchers found:

  • Awareness of symptoms: Before diagnosis, most (73.9 percent) were aware of the term “preeclampsia,” but only about half were aware of associated symptoms (this percentage improved over time from 32.2 percent before 2011 to 52.5 percent after 2016).
  • Involvement in decision making: About 30 percent reported that while in the hospital with preeclampsia, they did not feel that they were involved in/informed about decision making.
  • Stress: After delivery, many responders experienced stress. Almost half of the responders (49 percent) indicated that having preeclampsia seriously impacted their mental/emotional well-being. Increased stress was seen more frequently in those who did not feel involved in decision making during their hospitalization.
  • Education around long-term risk: After delivery, many women did not recall being advised about their long-term cardiovascular risks. Although this improved over time, still only about half of women reported being counseled about risk (32.2 percent before 2011 to 52.5 after 2016).

 Seely notes that counseling women about long-term risk is important because it gives them the opportunity to take preventive steps.

One known limitation of the study is that the Preeclampsia Registry is a study population that is predominantly non-Hispanic white and highly educated. In future studies, the researchers would like to include a more diverse population.

“In the future, this study should be replicated in a more diverse population,” said Seely. “One of our goals is to make these results known to clinical providers and public health organizations. We hope that by providing the patient perspective on the preeclampsia experience, we can educate providers to improve care.”

For more information about preeclampsia, the Preeclampsia Registry, and research in this field visit

About the Preeclampsia Foundation

The Preeclampsia Foundation is a U.S.-based 501(c)(3) non-profit organization established in 2000 to improve the outcomes of hypertensive disorders of pregnancy by educating, supporting, and engaging the community, improving healthcare practices, and finding a cure. We envision a world where preeclampsia and related hypertensive disorders of pregnancy no longer threaten the lives of mothers and babies. For more information, visit

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