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At the Society for Gynecologic Investigation (SGI) Annual Scientific Meeting in San Diego, Calif., in March, the Preeclampsia Foundation, in collaboration with lead authors Dr. Ineke Postma, Dr. Gerda Zeeman, Dr H. Groen of the University Medical Center Groningen, the Netherlands, and Dr. Thomas Easterling of the University of Washington, presented a poster on cognition, quality of life and social functioning after a hypertensive pregnancy. Many formerly preeclamptic women report difficulties with memory or word choice postpartum, but so do many women with normal pregnancy courses. The unanswered question: what is the likelihood that preeclampsia causes brain changes independent of pregnancy itself? If there are preeclampsia-specific changes, can those be separated from the trauma of a medical crisis?

Enrolling more than 1,000 participants in this study, the Preeclampsia Foundation's survey queried women with (cases) and without (controls) a history of hypertension in pregnancy. Participants anonymously completed an online survey assessing their cognitive functions, their quality of life, and their social functioning. The study found that the population of women with a history of preeclampsia scored statistically significantly lower on all three assessments. Although there was significant overlap between the populations, the average score for the populations as a whole was shifted - which suggests that there is actually real change triggered by preeclampsia - and that shift persisted after the populations were adjusted for things that could potentially affect the scores, like current use of blood pressure medication. Seizure was particularly strongly correlated with long-term cognitive difficulty. The study will also be presented in July at the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress in Geneva, Switzerland.

"More and more information is emerging suggesting that preeclampsia is a condition with long term implications," explained the lead author on the study, Dr. Ineke Postma. "Preeclampsia can be a very emotional and sometimes traumatizing experience with some women complaining about ongoing memory or attention-deficit problems. In order to provide adequate long term support to preeclampsia survivors, we need to identify the actual scope of the problem. This study is an important step in that direction."

Although this study used subjective neurocognitive testing (that is, the questions and test were not administered by a separate researcher, but self-reported), the study has some potential weaknesses, but it is an important step to investigating this question: does preeclampsia result in some level of permanent damage to your brain?

These kinds of research collaborations are but one way we catalyze research. See our research section for more information about our research initiatives.

 

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Posted on in Research

Every two years, the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress brings together the top researchers and clinicians in the field of hypertension in pregnancy to share innovations and encourage collaborations in research and clinical practice. As in year's past, the Preeclampsia Foundation participated in the 2012 meeting held July 9-12 in Geneva, Switzerland.

Like the current Olympics which inspire us to "Citius, Altius, Fortius" (Latin for "faster, higher, stronger"), the World Congress inspires participants to demonstrate new found knowledge and skills, and to push each other forward. In the enthusiasm of science-swapping and networking at a meeting like ISSHP, sometimes the larger purpose of our endeavors - saving lives and improving health outcomes of mothers and babies worldwide - may be forgotten by those racing from one intriguing lecture to the next.

That's where the Preeclampsia Foundation comes in. It is a testament to the extraordinary outreach of our mission that not only are we widely recognized as a key patient resource by individual health care providers, but are sought out by industry leaders as THE voice to provide a reminder of the patient perspective amongst the plethora of science and research. Our impact can be summarized in that one word: "voice." By joining our members' collective experiences along with the experience of wonderful new friends from European patient advocacy groups, we have become a powerful entity for change. A voice that is not only heard, but valued.

The Foundation's efforts to improve health care practices and catalyze research were also felt at ISSHP. Two investigators presented research findings developed through our collaboration in the Brain Study- and for many of our readers - it was your participation in this study that provided such meaningful data. In one oral presentation, findings suggested an association between history of preeclampsia and post-traumatic stress disorder. In the other, findings suggested an increase in neurocognitive disorders among women with history of preeclampsia. Both studies are being developed for publication and will be promoted via this newsletter when they're published. Both studies were exceedingly well received, with other researchers encouraging us to conduct further studies on long-term patient impact to improve clinical care.

We also presented two research travel grants, which helped promising young investigators attend this important meeting, interact with seasoned researchers, and become committed members of the hypertension in pregnancy community.

Every day, our website and social media platforms receive thousands of visitors from more than 200 countries around the world, so it was particularly wonderful to meet global health care providers who interact with those patients and who themselves use our website regularly. Unfortunately, we are sometimes the only source for additional patient support and education. So though no one received any laurel wreaths or gold medals during the Foundation's international journey, the patients are the real victors through the furthering of global preeclampsia research.

 

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That was my goal with the once-in-a-lifetime opportunity I was given to present one of three President's Program lectures at the American College of Obstetricians & Gynecologists' Annual Clinical Meeting.

"Patient Perspectives on Preeclampsia" - or as I joked, "lessons from this side of the stirrups" - was well-received by the standing-room-only crowd in the main auditorium of the San Diego Convention Center. More importantly, the many comments I received after the lecture satisfied me that I achieved my objective - to reach their hearts with compelling, real-life stories illustrating the impact preeclampsia has on mothers, fathers, and babies; and to reach their minds by inspiring clinical practice behaviors that include educating each and every expectant mother with non-alarmist, but sound information about the signs and symptoms of preeclampsia, as well as addressing the psychological and long-term physical impact of the disease. (Presentation available for purchase)

If you have ever shared your experience with us, know that you, and the stories of 10,000+ other women, were with me in spirit on May 7. The ACM News wrote about my presentation and the other two preeclampsia lectures (delivered engagingly by renown preeclampsia researcher Dr. James Roberts and clinician Dr. John Barton).

The awareness and education theme was echoed in a Foundation news announcement at the San Diego Promise Walk. With co-authors Dr. Doug Woelkers and Ms. Jennifer Carney, we announced our official list of the Top 10 Pregnancy Guidebooks. This report was created using five criteria designed to ascertain how well the books treated the topic of preeclampsia in a way that would be useful to the one in 12 pregnant women whose pregnancies become complicated by it. Several of the top guidebook authors have already contacted us, thankful that their diligence has been recognized, even while women's real-life feedback has reinforced our findings that the bestsellers aren't always the best books.

And although I'm no Twitter expert, it was fun to join College staff and two Ob/Gyn physicians on a Twitter Chat on preeclampsia that resulted in tens of thousands impressions, and to shoot a quick interview that was aired onsite for the 5,000+ people in attendance.

By all accounts, the entire experience left us all exhausted, but exhilarated. We frequently tout the importance of a patient-provider relationship and it was abundantly evident that the country's leading Ob/Gyn organization shares this goal. We are very grateful.

 

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Findings from several studies support the hypothesis that stress caused by a traumatic pregnancy and delivery can often override the ability to emotionally cope, leading to psychiatric complications such as post-traumatic stress disorder (PTSD) and post-partum depression (PPD). The combination of suffering a serious illness, combined with an unexpected caesarean section, birth of a premature child, or infant loss, is a heavy burden to bear both physically and psychologically.

Preliminary research findings, including a study initiated by the Preeclampsia Foundation, suggest that women who have endured traumatic pregnancies such as severe preeclampsia, eclampsia and HELLP syndrome have a higher incidence of PTSD and PPD than women without these complications. More research is needed to help move this information to clinical practice, but anecdotally enough of our survivors are impacted, that we offer these recommendations based on general trauma recovery practices.

Be patient. Recovery is an ongoing process with a different pace for everybody. However, if you are unable to care for your children or basic responsibilities of life, you should seek professional help. Coping mechanisms that may work for you may not work for your spouse or other family members, and vice versa. Healing doesn't mean you will have no pain or bad feelings when thinking about the pregnancy experience, but that you can develop more confidence to be able to cope with your memories and feelings.

Understand your pregnancy experience. Communicate with health care providers to understand the medical and emotional aspects of the experience. If necessary, ask to be referred to a qualified counselor. Whether you are dealing with the loss of a child, the loss of your health or the loss of your “sought after” pregnancy experience, mental health professionals can help you recover normal functioning in life skills. Plus, the Preeclampsia Foundation has great online and print health information resources for you and your family.

Stay connected. Research shows that good social support is vital to recovery. Stay connected in particular with your family and friends. You might also consider joining a support community, whether it is signing up for the Foundation’s Community Forum (www.preeclampsia.org/forum) or contacting your local health department or hospital services for a grief support group. Also, don’t forget that if you are in a relationship or married, severe trauma can be challenging to both partners, so be proactive to strengthen that vital relationship.

Find a great hobby. Not only does it boost your self-esteem, you will connect with people who share interests that are outside of your pregnancy experience. Find a subject about which you are knowledgeable and passionate. For instance, many women find comfort in the life-affirming aspects of nature: go for walks, start a gardening project, or volunteer at a local park or animal sanctuary.

Keep a journal. By writing things down, you can temporarily dissociate yourself from the world and start to chart your road to recovery. Write in it every day, even if it is only to state three good things that have happened that day.

Set goals. Start by setting small goals and commit to doing it. Make a list of all the things you used to enjoy and revisit them. Decide which one you are going to focus on and make a small start. Someone close to you can help you be accountable for your progress… or even join you to complete those goals!

For more information about PTSD or PPD research, or citations for these recommendations, please email info@preeclampsia.org.

 
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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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