Women report negative provider experiences with preeclampsia education, care

Women with preeclampsia reported that they were inadequately educated on the symptoms and long-term risks associated with the condition and said their clinicians largely did not address its mental health impacts.

The findings were published in BMJ Open.

“As clinicians, we see medical conditions through our own lens,” Ellen Seely, MD, the director of clinical research in the division of endocrinology, diabetes and hypertension at the Brigham and Women’s Hospital, said in a press release. “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.”

Seely and colleagues enrolled participants from The Preeclampsia Registry, an online registry launched by the Preeclampsia Foundation, into a cross-sectional study to evaluate their responses to a patient journey questionnaire. The analysis included 833 participants (95.4% white, 87.4% in the U.S.) who self-reported a history of at least one pregnancy complicated by a hypertensive disorder such as preeclampsia, haemolysis, elevated liver enzymes, low platelets syndrome, eclampsia or preeclampsia superimposed on chronic hypertension. The participants responded to an electronic survey about their experiences from before diagnosis to the postdelivery period. The questionnaire was offered from January 2016 to Nov. 24, 2020.

Awareness of preeclampsia

Overall, 73.9% of respondents were aware of the term “preeclampsia” before their diagnosis; however, only 43.7% of respondents were aware of the symptoms associated with it. Seely and colleagues reported that 29.2% of respondents did not feel that they were involved in or informed about decision-making while they were hospitalized with preeclampsia. These respondents were more likely to report a serious mental or emotional impact related to their preeclampsia experience (OR = 2.46; 95% CI, 1.58-3.84).

The researchers also reported that 58.6% of respondents first received information about preeclampsia from their clinician at the time of diagnosis. Among respondents who received information at any time, 50.2% were dissatisfied with the information they received and 84.9% of respondents reported independently researching for additional information about preeclampsia. Also, 38.1% of respondents said their clinician did not accurately convey the seriousness of their condition.

Counseling after delivery

After delivery, 49% of respondents reported that having preeclampsia seriously impacted their mental and emotional well-being, according to the researchers; 49.2% of respondents reported symptoms of postpartum depression after pregnancy. Moreover, 36.6% of respondents did not recall being advised about the recurrence risk associated with preeclampsia and 79.1% did not recall being advised about their long-term cardiovascular risks after delivery.

Overall, the proportion of women who were aware of the symptoms associated with preeclampsia increased from 32.2% before 2011 to 52.5% after 2016 (P < .001). The proportion of women who reported receiving counseling about long-term risks associated with preeclampsia also increased from 14.2% before 2011 to 25.6% after 2016 (P = .005).

Counseling women about the long-term risks associated with preeclampsia gives them the opportunity to take preventive steps, according to Seely.

“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 in the release. “Results from our study demonstrate concrete areas for improved patient-provider communication.”

References:

Bijl RC, et al. BMJ Open. 2022;doi:10.1136/bmjopen-2021-057795.

Study highlights need for better education, support for patients with preeclampsia. https://www.brighamandwomens.org/about-bwh/newsroom/press-releases-detail?id=4123. Published March 3, 2022. Accessed March 7, 2022.