Each year in the United States, preeclampsia affects up to 5 percent of pregnancies and is a leading cause of death and medical complications among mothers and babies. A study led by investigators from Brigham and Women’s Hospital set out to examine preeclampsia through the lens of patients’ experiences. The research team surveyed pregnant women about their experience with preeclampsia prior to hospitalization, during hospitalization, and at discharge and found that many women who had preeclampsia did not feel that the mental health impact of the condition was well addressed by their clinicians, were unaware of the symptoms that may indicate preeclampsia, and did not recall being educated about long-term risks. Results of the study are published in BMJ Open.
“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. “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.”
Preeclampsia is characterized by high blood pressure and can be associated with damage to organ systems, including the liver and kidneys. It can disrupt blood vessel function, lead to low platelet counts and, at times, cause seizures. Common symptoms that may indicate preeclampsia include headache, visual disturbances, swelling of feet and hands, abdominal pain and more. Preeclampsia occurs unexpectedly during the latter part of pregnancy, often develops rapidly and can be life-threatening to mother and fetus. Later in life, women who have experienced preeclampsia during pregnancy are at greater risk for high blood pressure (3-5 times increased), and cardiovascular events such as heart attacks (2-2.5 times increased), and stroke (1.5–2 times increased).
In their study, Seely and colleagues surveyed participants enrolled in the Preeclampsia Registry. Based on responses from 833 women, they 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.
“There are lifestyle measures that women can undertake, such as Life’s Simple 7 put forward by the American Heart Association, that can help reduce risk,” she said. “Results from our study demonstrate concrete areas for improved patient-provider communication.”
For this study, investigators surveyed women who were connected to the Preeclampsia Foundation — a study population that was 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.”
Funding: This work was financially supported by rEVO Biologics, Inc and the Peter Joseph Pappas Fund.
Paper cited: Bijl, RC et al. “The patient journey during and after a preeclampsia-complicated pregnancy: a cross-sectional patient registry study” BMJ Open DOI: 10.1136/bmjopen-2021-057795
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Bijl, RC et al. “The patient journey during and after a preeclampsia-complicated pregnancy: a cross-sectional patient registry study”
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