Preeclampsia survivors are more likely than women with uncomplicated pregnancies to experience feelings of guilt, shame, and lack of control; symptoms of post-traumatic stress disorder; and poor health-related quality of life.
Ellen W. Seely, MD, director of clinical research for the Division of Endocrinology, Diabetes and Hypertension at Brigham and Women’s Hospital, and colleagues recently used a structured survey to ascertain the experience of preeclampsia from the patient’s point of view.
The responses, reported in BMJ Open, demonstrate patients need routine, thorough education about preeclampsia early in pregnancy and better postpartum care.
The online Patient Journey Survey was offered to 3,618 participants in the Preeclampsia Registry, a project of the Preeclampsia Foundation. The questionnaire was first available in January 2016, and data for this analysis were last retrieved on November 24, 2020. The median interval between delivery and survey completion was 2.6 years.
The participants had self-reported at least one pregnancy complicated by preeclampsia, HELLP (hemolysis, elevated liver enzymes, low platelets) syndrome, eclampsia or preeclampsia superimposed on chronic hypertension. “Preeclampsia” was used throughout the survey because participants were presumably most familiar with that term.
Characteristics of Responders
Among the 833 responders, the median maternal age at delivery was 30 years. 90% were nulliparous at the time of their preeclampsia pregnancy. The Cesarean delivery rate was 66%, and 59% of infants had to be admitted to the neonatal ICU. Perinatal loss (stillbirth, termination of pregnancy, or neonatal/infant demise) occurred in 10% of cases.
Before the preeclampsia diagnosis:
- 74% of responders were aware of the term “preeclampsia”
- Only 44% were aware of symptoms associated with preeclampsia
- 91% had symptoms of preeclampsia
- 31% of participants with symptoms waited more than six days before contacting a healthcare professional
At Diagnosis and During Management
Of all responders:
- 59% said the first time a healthcare professional provided any information about preeclampsia was at the moment they were diagnosed
- 29% said they did not feel involved in the medical decision-making regarding their care, and 41% attributed that to inadequate communication from the healthcare professional
Of responders who received information about preeclampsia at any time:
- 38% thought their healthcare professional did not convey the seriousness of the condition
- 50% were dissatisfied with the information provided
In the short term:
- Only 31% of responders received information about preeclampsia before being discharged
- 30% were not instructed to follow up with their healthcare professional about their diagnosis of preeclampsia
- For 70%, the experience of having preeclampsia harmed their mental/emotional well-being
- 49% experienced symptoms of postpartum depression, and 17% reported being diagnosed with postpartum depression
With respect to long-term management:
- 37% were not counseled about the risk of preeclampsia recurrence
- 79% were not counseled about later-life health risks associated with preeclampsia (cardiovascular disease and diabetes)
Differences Over Time
To account for possible changes in practice patterns over time, the research team evaluated differences in responses by year of delivery: before 2011, 2011–2013, 2014–2016, and from 2017 onwards. 2011 was the year the American Heart Association guidelines on the prevention of cardiovascular disease in women recognized preeclampsia as a major risk factor.
The proportion of positive responses increased over time across critical parameters, especially knowledge about preeclampsia symptoms before diagnosis, feeling involved in decision-making, and receiving instructions about follow-up.
Opportunities to Improve Care
Preeclampsia often occurs unexpectedly, develops rapidly, and requires fast and complex medical decision-making. Comprehensive patient involvement isn’t always feasible, underscoring the need for rigorous and effective communication early in pregnancy.
Most women in this study were instructed to follow up with their healthcare professional about their preeclampsia diagnosis, but in many cases, they were never counseled about the possibility of postpartum complications and future health risks. Healthcare systems should develop evidence-based care pathways that include specific processes for the transition of care.