Posted on in Health Information

Several years ago, Dr. Jun “Jim” Zhang, a senior investigator at the National Institute of Child Health and Human Development approached the Preeclampsia Foundation about working together on an epidemiological research study. Here was the study’s rationale:

“Preeclampsia is a syndrome of hypertension accompanied by proteinuria. It is a major pregnancy complication, associated with premature delivery, fetal growth restriction, abruptio placentae, and fetal death, as well as maternal morbidity and mortality. Although preeclampsia has been recognized for centuries, the etiology of this disorder remains unknown. Familial clustering of preeclampsia has long been identified, leading to the concept of a genetic basis for this syndrome. We propose a familial genetic study of preeclampsia. As such a study is often difficult to do, we plan to conduct a pilot study to test the feasibility, logistics and examine frequency of genetic polymorphism of certain genes in the target population.”

A total of 60 women who had preeclampsia during their first pregnancy were identified through the Preeclampsia Foundation. Women who had chronic hypertension or diabetes prior to the first pregnancy were excluded. We also tried to enroll their family members in the study. All subjects were asked to complete a self-administered questionnaire and collect mouth wash samples, in order to collect the buccal cells from which DNA was extracted. Women who reported having hypertension during pregnancy were also asked to sign a medical record release form, and a copy of their medical record was obtained to confirm the diagnosis of preeclampsia.

Forty-six women returned the questionnaires and samples, resulting in a 77% participation rate – a very high response for research studies. The actual enrollment rates for the biological mother, father, mother-in-law, and father-in-law ranged between 61% and 26%; and the actual enrollment rates for full sisters, brothers-in-law, full brothers and sisters-in-law ranged between 23% and 36%.

“Thus,” concluded the abstract, “conducting a familial genetic epidemiologic study with self-administering questionnaires, mouthwash and buccal swabs is feasible. However, strategies for increasing participation rates among family members are warranted.”

We concluded the collection process in early 2006, and the resulting abstract was submitted to the International Society for Studies on Hypertension in Pregnancy and the Society for Pediatric and Perinatal Epidemiology annual meetings. Our Study Managers, Anne Garrett and Carrie Barrion, presented the poster at the latter meeting.

 

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Continuing Medical Education (CME) courses are a key way for medical profes­sionals to upgrade their skills, master the latest research and qualify for promotions and membership in industry organizations. Last year the Preeclampsia Foundation and the University of Minnesota’s Deborah E. Powell Center for Women’s Health joined together to create the first-ever online CME course devoted to preeclampsia prediction, management and outcomes. Now that the first offering of the course is complete, feedback from participants suggests that it could play an important role in improving awareness, diagnosis and treatment.

The CME was divided into three modules: one devoted to diagnosis, a second with the latest treatment and management informa­tion, and the third focusing on heart disease prevention in preeclampsia survivors. Physi­cians Dr. Thomas Easterling, Dr. Michael Katz and Dr. Tanya Melnik conducted the lectures, which were accompanied by online PowerPoint presentations.

When participants were asked to rate the CME, “the evaluations showed overwhelm­ingly excellent scores,” says Becky Gams, an RN with the University of Minnesota who ran the CME. Seventy-four percent rated the first module as “excellent.” Even more im­pressive were the comments that participants made when asked what changes they would make to their work as a result of the course. “[I will] monitor my pregnant patients more closely and have a higher suspicion of preec­lampsia,” wrote one student. Another said, “Having a better understanding of the pa­thology and possible predictors will heighten my awareness about potential complications during the preconception and ante-natal time period.” Several wrote that they would encourage patients to manage their weight or hypertension before conception.

J. Thomas Viall, Executive Director of the Preeclampsia Foundation, says it is criti­cal that the Preeclampsia Foundation offer further CME credits through its website. “It reinforces our credibility with both the pro­fessional and patient communities,” he says. “The challenge is to do it in a way that is cost effective as well as compelling so as to drive traffic.” Producing the material, administer­ing the CME certification and hosting the website is expensive, and the existing course was made possible through a $10,000 grant from Black River Asset Management. Vicki Nolan, the sister of Preeclampsia Foundation operations director Jamie Nolan, works for Black River and applied for the grant. There is also pressure to improve production values to compete with more lavish CME courses designed by for-profit companies. At the moment, the course is available online for in­formation purposes, but not for credit. “We are currently in consultation with our Medi­cal Advisory Board to develop new CME and professional education opportunities and hope to have a new set of courses available by the end of the year,” says Mr. Viall.

 

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Say “matrix” and visions of a kick-boxing, black-clad Keanu Reeves may come to mind. No, this is not a movie review.

Every day, a small army of Harvard Medical School researchers reports to The Life Sci­ences Building in Boston’s Longwood Medi­cal Area. It’s new, ultra high-tech. It towers over its neighboring hospitals and research facilities and, with its clean lines, giant glass panels and sweeping marble stairway, would be a set designer’s dream for another sequel to “The Matrix”. The men and women who spend so much of their lives in this futuristic workplace are pulmonologists, oncologists, nephrologists, neurologists; they are natives of France, Norway, Sweden, Finland, India, China, Japan, Turkey, and the U.S. They study and work under the leadership of Dr. Raghu Kalluri, Chief of the Division of Matrix Biology at Beth Israel Deaconess Medical Center.

Composed of proteins and found through­out the body, the matrix serves as a platform for cells. Kalluri says just ten years ago, scien­tists believed that a cell contained all the in­formation it needed to function. Researchers have since discovered that the extracellular matrix actually tells the cells how to behave. After countless division, cells become liver cells, kidney cells, brain cells.all kinds of cells. Kalluri says the matrix supporting kidney cells, for example, tells those cells to “behave like a kidney”. Transfer them to a matrix in the brain and they’re no longer act­ing like kidney cells, but rather assuming the function of brain cells. Kalluri says as many as 50 different human diseases can be traced to defects in proteins outside the cell, which would explain in part, why the matrix has become a field of study in itself. And matrix biology has served as a powerful attraction for these graduate students and medical professionals from a range of disciplines.

New Jersey native, Scott Potenta, whose research paper had just been accepted the day we spoke, says he’s always been inter­ested in matrix proteins and their effect on cell behavior. He is studying the way blood vessels react in diseases such as cancer. Valerie LeBleu, a native of France and the first Har­vard graduate student to work at the Matrix Biology Lab, is trying to find alternatives to dialysis for treatment of Alport Syndrome, a genetic kidney disease that affects 1 in 5,000 people. LeBleu and Potenta say they appreci­ate the richness of the laboratory, which is obvious in the diversity of the workforce and the wide representation of specialties, all of which foster the sharing of knowledge and experience. Formal discussions at stations in the main laboratory, as well as informal con­versation over coffee in the break room can and do give way to new ideas, and more than a few “aha!” moments. Both of these young researchers and their colleagues made it clear to this reporter, it’s a privilege to work in this cutting-edge environment.

Their days are spent comparing graphs on a split computer screen or peering into micro­scopes deciphering cells on a slide, manipu­lating organic solutions, each with their own requirements for survival: simple refrigera­tion or having to be gingerly lowered into giant cylinders, filled with dry ice.

In the next row of lab stations, is Dr Keizo Kanasaki, a Japanese native and research fel­low in medicine. Kanasaki collaborated with Kalluri on a paper reported in the May 11, 2008 online “Nature”. They theorize that preeclampsia is actually linked to an absence of 2-ME, and that administering that pro­tein to women with the disease would be a viable treatment. Because this is a women’s disease, you might think that Kanasaki is an obstetrician. He is a nephrologist; he studies the kidney. Which brings us back to the common ground for all of these dedicated researchers…the matrix. Discoveries within that mass of protein, the scaffolding for cells throughout the human body, could yield the keys to unlocking the mystery of pre-eclampsia and, hopefully, lead to prevention.

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<p style="margin: 0in 0in 4.5pt;"><span><span style="color: #000000;"> </span></span> Although the literature is scant, research has shown that lack of patient information is correlated to poor health outcomes.  Our own research shows that fewer than half of pregnant women are educated about the signs and symptoms of preeclampsia by their health care providers.  (As an aside, we've been working with epidemiologists at the University of Iowa to conduct deeper analysis of our data; this research has been deemed compelling enough that we'll be sharing our findings via an oral presentation at the ISSHP World Congress in Melbourne, Australia.)</p>
<p style="margin: 0in 0in 4.5pt;">Thus, patient education is high on our list of priorities. This includes involving a broad spectrum of health care providers in this effort.</p>
<p style="margin: 0in 0in 4.5pt;">There are many occasions where pregnant women come in contact with health care professionals - childbirth educators, doulas, midwives, and the physicians and nurses they see in clinics, hospitals and offices.  Each of these encounters is an opportunity to provide and reinforce information about the warning signs of preeclampsia, why it's important to be attentive to those signs and what action to take. This is our "Continuum of Care Campaign," recognizing that, besides physicians, other care providers may have more time, skills and orientation to provide effective patient education.</p>
<p style="margin: 0in 0in 4.5pt;">Thanks to a grant from the Beckman Coulter Foundation, we have undertaken several strategies in 2010 to focus on patient education along this continuum of care. We're using a beautiful and professional display unit to exhibit at four medical conferences this year. In addition to providing our patient education materials to nurse-midwives (ACNM) , doulas (DONA), childbirth educators (ICEA) and women's health and obstetric nurses (AWHONN), we are also using these and other events to survey health care professionals about their attitudes and behaviors with respect to preeclampsia education for patients.  We've already collected over 200 survey responses and expect by the end of the year to have well over 1,000, enough to analyze the data and prepare our findings for publication in 2011.</p>
<p style="margin: 0in 0in 4.5pt;"><br />In June, we attended the first of the conferences in Washington, DC. Our booth enjoyed very high traffic from hundreds of interested nurse-midwives, most of whom had not heard about the Preeclampsia Foundation, but were thrilled to learn of our resources.  The "prescription pads" were a huge hit as they saw those as easy, simple ways to send their patients home with the basic signs and symptoms, a place to capture the patient's vitals (BP/proteinuria/weight gain), and encourage her to seek additional credible information at <a href="http://www.preeclampsia.org">www.preeclampsia.org</a>. Special thanks to new volunteer Kelly Adams who helped staff our booth. If you're interested in volunteering at a future conference, please contact Kara Boeldt, Director of Volunteer Development.</p>
<p style="margin: 0in 0in 4.5pt;">Finally, our brochure campaign will be getting a fresh boost of energy under the guidance of Johanna Aiken, our new coordinator. (And many thanks to our outgoing coordinator, Angie Grospitch, who ably supervised this program for almost two years!) This campaign enrolls volunteers across the country to promote the usage of our patient education resources - brochures, refrigerator magnets, DVDs and symptom "prescription pads" - in various health care settings and along the continuum of care. Johanna will also be working with local and national organizations to secure additional endorsements and distribution channels for the materials. If you're interested in turning the numbers around so that all pregnant women know what warning signs to be diligent about, please contact Johanna Aiken immediately.  We need education warriors!</p>
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On October 18, the Iowa Section of the Association of Women's Health, Obstetric and Neonatal Nurses hosted Preeclampsia: A Team Approach to help provide healthcare providers with a greater understanding of the disease. More than 70 participants enjoyed the viewing of the 2009 Chairman's Hope Award for Outstanding Service video highlighting John and Brenda Warner, opening comments by Sue Gehlsen , Executive Director of Women's Services at Iowa Health, presentations by Joseph Hwang, MD, FACOG and George Lederhaas, MD on hypertension in pregnancy and anesthesia issues in preeclampsia and HELLP syndrome, and dinner discussion with Christine Streets, Mrs. Iowa United States, who shared her own HELLP syndrome story.

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Posted on in Research

Several major disorders that occur during pregnancy result from failure of the placenta to implant correctly into the uterus or womb. During early pregnancy cells from the placenta, known as trophoblast cells, invade into the uterus and tap into the mother’s blood supply to sustain the growing baby. Failure of this process can lead to insufficient supply of blood to the placenta resulting in preeclampsia, as well as low birth weight babies, stillbirth or recurrent miscarriage.

The invading placental trophoblast cells intermingle with maternal immune cells in the uterine lining. Trophoblast express not only maternal but also paternal genes and these will be different or “foreign” to the mother. Maternal immune cells can recognize these “foreign” fetal molecules and are thought to regulate the implantation process, allowing sufficient but not excessive invasion of the placenta. In the preeclamptic pregnancy this interactive process goes wrong and there is inadequate modification of the blood vessels which can lead to “starvation” of the placenta and subsequently triggering of the preeclamptic syndrome later in gestation in the mother.

The important molecules displayed by the trophoblast that are recognized by maternal immune cells are members of the HLA (Human Leucocyte Antigen) family known as HLA-C. The maternal receptors that recognize and interact with HLA-C are the KIR family (Killer Immunoglobulin-like Receptors). These two gene families (HLA and KIR) are very variable or polymorphic meaning that each mother will inherit a particular set of KIR genes and the fetus an HLA-C gene from both mother and father. This means maternal KIR will bind to fetal HLA-C can vary from one pregnancy to another. The interaction should lead to successful implantation but sometimes the combination of these genes from mother and baby results in inadequate invasion and leads to complications in the pregnancy.

Last month, in the Journal of Clinical Investigation, a team from the University of Cambridge reported new findings on the genetics underlying preeclampsia and other placental diseases. Women with a particular set of KIR genes – the KIR-AA genotype – who were carrying a fetus with a HLA-C2 gene were at higher risk of developing preeclampsia than those carrying other KIR/HLA-C gene combinations. This was especially so if the fetus had inherited the HLA-C2 gene from the father.

These genetic findings do not translate directly into therapeutic interventions in preeclampsia although it may be useful eventually in choosing a compatible sperm donor in IVF. The results tell us more about why placental implantation goes wrong sometimes. They might explain the old idea of the “dangerous male”, where pregnancy with particular men often results in preeclampsia. The report does emphasize the common underlying processes that would explain why a history of miscarriage or infertility is associated with a heightened risk of preeclampsia in subsequent pregnancies. Furthermore this risk cannot be affected by lifestyle, which helps those of us who “did everything right” to explain what went wrong.

Also this month, a team from the University of British Columbia, Vancouver, followed up on the connection between blood levels of vitamin D and preeclampsia in the British Journal of Obstetrics and Gynecology. It makes sense to think that the levels of vitamin D in the maternal bloodstream might have something to do with the later development of preeclampsia, because the vitamin is already known to affect some immune responses and because early small observational studies have shown an increased level of preeclampsia in the group of women with low vitamin D levels.

To check this, researchers measured serum levels of vitamin D in a population of women at high risk for preeclampsia, and then recorded their pregnancy outcomes. While the majority of the women had low levels (over three-quarters of the test population had lower levels than normal, and half were technically deficient), there was no connection between the severity of their pregnancy outcomes and the level of deficiency. In other words, some women with normal vitamin D levels still had severe preeclampsia, and some women who were deficient according to current guidelines did not go on to develop preeclampsia at all. This finding suggests that supplementing vitamin D may not have an effect on preeclampsia, although it is still interesting that women who develop the condition also tend to have low levels. There may be some connection between "having the sorts of genes or environment that lead you to develop low levels of vitamin D" and "having the sorts of genes or environment that lead you to develop preeclampsia."

 

A special thanks to Dr. Ashley Moffett, University of Cambridge, and Dr. Timothy Green, University of British Columbia for their expertise and technical input.

 

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Posted on in Research

Currently there's no way to know for certain whether preeclampsia will develop during any given pregnancy. This leaves pregnant women and their care providers with little choice but to wait for symptoms to appear... dangerous symptoms that mean the disease has progressed to the point where mother and baby are critically ill and will need intensive monitoring and carefully timed delivery to protect their health and lives. The only screening method to date is to measure those symptoms when they appear.

Early detection wouldn't be a treatment. But what if a screening test could let us know, weeks or even months in advance, that we'd probably be getting ill? Knowing might change the way we seek care - possibly choosing specialist care providers with the education and experience to manage medically complicated pregnancies. Women in parts of the world (like Wyoming in the winter) where such care is in short supply might be moved to bigger cities where NICUs and maternal-fetal medicine (MFM) specialists are more accessible. Neonatal specialists could be brought into the consulting team, and steroid shots to accelerate fetal lung development could be planned. All of these interventions together have the potential to lower the rates of fetal and maternal death and severe complications dramatically. (By the way, you may agree or disagree with this assessment; either way, we'd really like to hear your perspective in this important survey we recently launched.)

 

Since many experts consider such a test preferable to our current screening methods, recent research has tried to find a workable test with high levels of both specificity and sensitivity. An ideal test would be one that picked up *all* cases of preeclampsia - it would be sensitive - and *only* cases of preeclampsia, with no false positives - it would be specific. In practice this is all but impossible to achieve, but it's quite possible to find tests with very high levels of sensitivity and specificity, with one measure performing slightly better than the other.

 

So for researchers this creates a choice between creating tests that would produce false positives, and tests that would miss some cases. The worst-case scenario of a false positive is likely to be unnecessary close monitoring; it would not be an indication for immediate delivery. It would provide a reason to follow the pregnancy more closely for symptoms that do indicate that the acute phase of the illness has developed. Since the worst-case scenario of a false negative is a missed case of preeclampsia leading to death of mother and/or baby, public health researchers would prefer to develop tests that will overdetect cases of preeclampsia, but with a low rate of false positives.

 

At a meeting of the American Society of Nephrology (ASN) in November, Dr. Vesna Garovic (Mayo Clinic) reported on a study into the use of urinary podocytes as a screening test for preeclampsia, a test that may turn out to have both high sensitivity and specificity for preeclampsia. Podocytes are cells which line the blood vessels in the kidneys and act as filters which keep protein in the bloodstream. Their loss allows protein to spill into the urine, one of the primary signs of preeclampsia.

 

Garovic's research team used a population of 267 women and collected their urine between 25-28 weeks gestation. The samples were examined for podocytes. The 15 women who went on to develop preeclampsia all had podocytes in their urine at that gestational age. The 15 women who developed gestational hypertension did not. The control group of women who had normal pregnancies also did not.

 

Previous research from the same group has indicated that podocytes are present in the urine when preeclampsia symptoms first appear. When they shed into the urine, they cause disruptions in the filtration barrier in the kidney, resulting in proteinuria. The "classic lesion" of preeclampsia - glomerular endotheliosis - may include the loss of these podocytes from the glomeruli in the kidneys.

 

To confirm that this test works well, it will need to be repeated in multiple centers serving broader populations of pregnant women, and to make it available for general use, it will need to be turned into a commercially available testing product. That said, these are very hopeful results - unlike the soluble factors researchers are also pursuing, podocytes appear to only be elevated in women who go on to develop preeclampsia. The soluble factors are elevated in all pregnant women, and just unusually elevated in preeclamptics, which makes it very difficult to develop a screening test with high sensitivity and specificity.

 

Interestingly, it's likely that the podocytes are damaged because of the increased level of sFlt-1, which binds VEGF, which impairs repair of the podocytes and increases the rate at which they die off. It seems likely, given this new research, that it will be easier to detect the damage to the podocytes themselves than it will be to detect an increase of the soluble factors above the point where damage is likely.

 

If it's possible to develop a test similar to a standard pregnancy test, this might be a very effective method which wouldn't require laboratory work, and would make screening much easier and more rapid. Pregnant women who will likely go on to develop preeclampsia could be moved to the care teams that manage complications before they are critically ill, allowing both them and their babies to receive appropriate medical care that would probably reduce poor outcomes substantially.

 

 

A special thanks to Dr. Vesna Garovic at Mayo Clinic, for her expertise and technical input.

 

 

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Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.

For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal Center maintains a 24-hour hotline to facilitate the transfer of high-risk mothers and infants. Through the perinatal center, Rush offers an extensive series of classes for physicians, nurses and other health professionals. Other centers are housed out of the Other centers are housed out of the University of Chicago Perinatal Center; John H. Stroeger, Jr. Hospital of Cook County Perinatal Center; Northwestern/Childrens/Evanston Perinatal Center; University of Illinois /Christ Perinatal Center; Loyola University Perinatal Center; Northwest Illinois Perinatal Center - Rockford Memorial Hospital; North Central Perinatal Center - St. Francis Hospital; South Central Illinois Perinatal Center - St. John’s Hospital; Southern Illinois Perinatal Network - SSM Cardinal Glennon Children's Medical Center and SSM St. Mary’s Health Center.

These regional networks have been widely credited as one of the principle reasons for the rapid decline in neonatal mortality rates in the last several decades. Although, the other principal reason is the introduction in the late 1980s of surfactant replacement therapy, which reduced the incidence of lung disease in newborns.

In Illinois, especially the Chicago area, Preeclampsia Foundation volunteers have been making presentations about the Foundation to various perinatal networks. These volunteers share their stories and information about resources available through the Foundation. They also ask for input on what additional materials would be helpful. From these discussions came the development of a unique HELLP syndrome seminar involving a point-counterpoint type of presentation contrasting the input of Dr. Judith Hibbard of the University of Illinois-Chicago against that of HELLP survivors' real world experiences. As a result of these presentations, orders for the Foundation's patient education materials have increased tremendously. These interactions have also provided good opportunities for raising awareness about upcoming Promise Walks for Preeclampsia™.

Debbie Schy from Advocate Lutheran General Hospital is one of the current co-chairs of the Perinatal Outreach Educators of Illinois and has attended presentations from Foundation volunteers. "We're so appreciative of the volunteers from the Foundation," said Schy. "They are a phenomenal group and we are lucky to have you here."

The Foundation is working with local volunteers to take the success we've enjoyed in Illinois to other major markets across the nation.

 

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For Dallas-area volunteer Nicole Purnell, fundraising for the Preeclampsia Foundation is nothing new: she is currently in her fourth year as the Dallas-Ft. Worth Promise Walk Coordinator. So when she and her family decided to do another fundraiser for the Foundation, they decided to try something entirely different, and catered to their home state of Texas: a clay-shooting tournament to be held March 10.

"Of course, I realize that shooting clays is not an activity for everyone's taste, but this IS Texas after all!" explained Purnell. In organizing the event, she and her stepfather, who is co-hosting the tournament, realized that this would be a unique opportunity to pull in a different crowd than that of the Promise Walks for fundraising and awareness.

"My stepdad is a retired Navy SEAL and has many friends who enjoy clay shooting," Purnell said. "I had been wanting to do a clay shoot event for some time, and then, one day I got my daily Groupon e-mail. Low and behold, there was a clay shooting location about 20 minutes from my house! The location, Fossil Pointe Sporting Grounds, is on approximately 400 acres of prime North Texas "Hill Country" with amazing views."

The concept is similar to that of a golf tournament, but with a course made up with 12 automatic stations, that each throw a different pattern and number of clays, for a course total of 100 clays. The event will also have warm-up games for anyone that has not shot sporting clays or wants to freshen up on their skills.

After finishing the course, participants will be treated to dinner, an awards ceremony, live auction and a raffle that includes a beautiful Benelli Montefeltro 20-gauge shotgun. Tickets can be purchased now until March 10 or until tickets are sold out. Anyone can buy raffle tickets, sign up individually or with a team to shoot, or come to dinner and bid on the auctions. Raffle winner does not need to be present to win. For more information, please contact Nicole Purnell.

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During the week of March 26, 2012, the Supreme Court of the United States heard arguments about the constitutionality of the Patient Protection and Affordable Care Act (ACA), otherwise known as the Health Reform Law. As the Preeclampsia Foundation continues to advocate before state and federal policymakers on maternal health issues, we are watching closely to understand what affect the Court's decision(s) will have on women and their families.

The following is an overview of the key questions being considered by the Court after three days of debate - the longest hearing on a single case heard by the Supreme Court since 1966.

Should the law even be considered by the Court at this time - the Anti-Injunction Act? The court must determine whether the case can be decided now, or whether the court must wait until 2015, when the tax provisions of the law (individual mandate requiring individuals to purchase health insurance) go into effect. The basis for this decision is based on a 140 year-old law called the 1867 Tax Anti-Junction Act, which says that people can't sue over a tax until they actually pay the tax. This decision affects whether the court can consider the other issues below.

Is the individual mandate constitutional? The court must determine whether the federal government has the constitutional authority to require that every individual purchase health insurance or pay a penalty if they refuse to do so.

If the individual mandate is ruled unconstitutional, what happens to the rest of the health reform law? At issue is whether the individual mandate can be severed from the health reform law without dismantling the entire law. Funding from individuals purchasing insurance is meant to cover the costs of other programs in the law and ensure program viability. The Obama Administration is arguing that if the mandate is ruled unconstitutional, the rest of the law should stand with two exceptions: the law's requirement to cover people with pre-existing conditions and the requirement that insurers use a "community rate" that ignores individual health status.

What about the health reform law's Medicaid expansion? Medicaid is a joint federal-state program. Currently, individuals who earn up to 100 percent of the federal poverty level are eligible to participate, and states receive federal funds to support the program. Under the law, individuals who earn up to 133 percent of the federal poverty level will qualify for Medicaid in 2014. If any state does not comply with that expansion in eligibility, those states will forfeit any federal Medicaid funding. The court must determine whether the federal government has gone too far in pushing the states.

Here are some key provisions in the ACA that affect maternal health:

  • Establishes state health exchanges - markets where individuals and small businesses can select the best health insurance coverage to meet their needs;
  • Requires individual and small group plans within and outside the state exchanges to cover essential health benefits, including maternity and newborn care;
  • Provides insurance subsidies for those with incomes between 100-400 percent of the poverty line;
  • Expands Medicaid eligibility to individuals with income up to 133 percent of the poverty line;
  • Eliminates lifetime and annual limits on benefits;
  • Requires insurance companies to guarantee and continue coverage;
  • Creates high risk insurance pools for people who can't get insurance on the market currently;
  • Requires coverage of women's health preventive services without a co-payment;
  • Prohibits excluding patients with pre-existing conditions from insurance plans.

Source: Drinker Biddle & Reath, Capitol Health Record Blog, www.capitolhealthrecord.com

 

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Last week, the Supreme Court upheld the constitutionality of The Patient Protection and Affordable Care Act, otherwise known as the "health reform law." This means that implementation of this landmark legislation can continue to move forward. However, the law continues to be the subject of debate through this year's presidential and congressional election cycle, and depending on the election results could be altered by Congress and the White House in the future. As it currently stands, the law directly benefits childbearing women and newborns by:

  • prohibiting the use of pregnancy as a preexisting condition by health insurance providers;
  • widening access to certified nurse-midwives by eliminating inequities in how they are reimbursed under Medicare;
  • paying for home visits by nurses for at-risk families during or after pregnancy;
  • expanding access to primary maternity care by improving Medicaid coverage of freestanding birth centers;
  • expanding access to Medicaid and affordable private health insurance for women of childbearing age who are now uninsured or under-insured;
  • requiring maternal health coverage as an essential health benefit to be provided by individual and small health plans offered within state health care exchanges.*

As the election nears, we will continue to keep you updated on issues related to maternal health that are affected by the health reform law.

*Some information above provided by Childbirth Connection

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What was your experience with preeclampsia?

I had preeclampsia with both of my pregnancies. With my first child, I was not made aware of the symptoms of this condition, so when I started having side pains, I just thought I had a cramp, nothing serious. I had gained a significant amount of weight, but had no basis of comparison, so I believed it to be just the nature of being pregnant. I went from 115 lbs to 180 lbs and assumed that was normal. I was swollen, short of breath, and generally unhappy. By the time the high blood pressure became a threat, it became significantly high. Because my proteins showed up during a routine visit and at about 28 weeks, I was put on bed rest, and was administered Labetalol to manage my blood pressure. After I gave birth at 35 weeks with my eldest daughter, I was told I had been preeclamptic but that it was "not a big deal." I was reassured it does not necessarily happen with every pregnancy, so I was told, for my next baby... "Let's plan to have a drama-free pregnancy."

About a month or two after the birth of my first child I saw an episode on TLC of a woman who lost her baby due to preeclampsia and I thought... "Hey, that is what I had!" I had no idea what it was and so after I watched the show, I researched the condition. The next day, I called my Ob/Gyn and I asked her "Could my baby have died from what I had? " I was concerned because she had been so relaxed about it. She briefly explained the condition to me but again stated I just "needed to relax and watch my diet and I would be fine for the next baby."

A year later, I got pregnant with my second child. At 12 weeks, I looked 28 weeks pregnant due to my size. My signs and symptoms the second time were worse and more pronounced. The doctor prescribed 1000 mgs of Labetalol and 60 mgs of Procardia with my blood pressure still lingering at 210/120. No matter what I did, I couldn't relax because I felt like I had an elephant sitting on my chest and I couldn't breathe. I was heavily retaining water. My nose was enlarged, my lips had swollen, my feet were swollen, I could hardly see out my eyes. I had migraines that were so severe that I couldn't even walk. I woke up every morning and wondered if I would make it to the next day. I felt completely and utterly tortured. I weighed over 185 lbs at 28 weeks pregnant with a starting weight of 120. I would call my Ob's office and cry and tell them I couldn't breathe and I felt like someone was suffocating me and they would tell me to go lay down and rest. I felt that I had no voice for my condition.

At 28 weeks I went into the hospital when my proteins were elevated and shortly thereafter gave birth to my second daughter, Sophia. I was in the hospital for a week after I gave birth and Sophia stayed in the NICU for 8 weeks, as she was born at 3 lbs, but had dropped to 2 lbs 10 oz and we couldn't keep weight on her.

I ended up leaving my gynecology practice 6 weeks postpartum after having been a patient with them since I was 18 years old. I was so upset because I felt that I had had no support during this time. At my 3-4 week post check up I told them that I was blacking out and had fainted the night before. I was certain that I had a TIA, based on the symptoms that were confirmed by several knowledgeable people in the cardiology field. I told my doctors this... And nobody did anything about it. Later, my husband told me that I should ask my Ob/Gyn about the risk of heart disease due to preeclampsia, and I was shocked that I was the one who had to address this information.

Why do you volunteer for the Preeclampsia Foundation? What positions have you held?

I volunteer for the Preeclampsia Foundation because I believe in my heart that this is a serious condition that needs to be addressed. I was shocked when I met other volunteers how many had shockingly similar stories. When I looked at the statistics, I learned over 500,000 babies and 76,000 mothers die each year worldwide. At this moment, I knew this was a non profit that I wanted to dedicate time to helping out. I am very passionate about the organization and what it represents. This past year I was the keynote speaker in Denver at the Preeclampsia Promise Walk and was honored to share my stories with other survivors in Denver. I decided to run for the title of Mrs. Colorado International after winning the state title in March of this year, to see if I could help make a difference state wide, nationally, and if I won the title of Mrs. International, I could change lives across the globe.

What are your goals and dreams for your involvement with the foundation?

My international pageant was held July 20, 2012 in Chicago and I am proud to say that although I did not win the International title, it was such an honor to make it to the Top 10. Once I made the Top 15, we were asked individually to speak to the thousands of spectators about our platform. After I spoke about preeclampsia, I was asked questions about my goals for the Preeclampsia Foundation if I won Mrs. International. I explained how I have been working on signs and symptoms awareness posters that I think would be very beneficial if these were placed in every gynecology office across the nation. That way, on every prenatal visit, when that patient is sitting in her doctor's office exam room waiting for her doctor to come in, she may read this information and know what preeclampsia is. It is my goal that we do not have to rely on the doctor to tell every patient about this disease. They can learn it for themselves and when or if those symptoms arise, they will know what to look for and speak to their physician about it. Education is key: and knowing your body. If something doesn't seem right, then it probably isn't.

What has been your most gratifying moment as a volunteer?

My most gratifying moment this year was when I made it past the Top 15 in the pageant, stood there and spoke about preeclampsia to educate thousands about the disease. You never know who in that audience I might have been affected in a way that could save a person's life. If I had not stepped outside of my comfort zone by entering the pageant circuit, I never would have had this impact. When I made it to the Top 10 after my statement, I knew I had delivered the information effectively and I cried so hard I had a hard time walking off the stage to stand in my spot in front of the crowd. Through my tears I looked over to the judges and blew them a kiss and said "Thank you." I was up there representing myself and my daughters, and I stood for the thousands of women who have lost their babies or lives from this serious illness. I am a better person for having had that opportunity.

My goals now still have not changed even though I did not take home the International crown. I am still Melissa Heideman, a survivor, and I plan to tell my story to anybody who will listen. I have a jewelry designer here in Denver who is gracious enough to have offered me a jewelry show with 100% of the proceeds to the Preeclampsia Foundation. Today I learned that a local radio station wants to do a fundraiser for the foundation and feature me on the show. I also have a local boutique who has offered me the opportunity to have a private party, invite friends, and 10% of proceeds will go to the Foundation. I plan, beauty queen or not, to help the Foundation for as long as I am living. It has been a complete privilege and honor to represent the foundation. Lastly, I plan to help the Preeclampsia Foundation organize the 3rd annual Promise Walk in Denver. Please check out my website at www.melissaheideman.com.

 

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By Dr. Anne Wallis ~ Who remembers the first season ER episode "Love's Labours Lost"? The answer: pretty much anyone who ever watched ER! In the episode, a pregnant woman presents to the emergency room with a complaint of bladder problems, has a seizure and later dies. This was my first exposure to the hypertensive disorders of pregnancy. Eclampsia is, thankfully, rare, but it carries a high case fatality rate for the mother and/or the infant. Gestational hypertension and preeclampsia are far more common, affecting between 5% and 8% of all pregnancies in the US. Moreover, these conditions are on the rise and globally, these conditions are a leading cause of maternal and infant illness and death.

Obstetric providers are acutely aware of the dangers of preeclampsia because of its potential severity and rapidity of onset and progression, making high-quality prenatal care and patient education essential.

Unfortunately for patients, preeclampsia education is not a required component of prenatal care visits, though the Preeclampsia Foundation is working hard to change this. Perinatal practice guidelines currently published by the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) provide no guidance to providers regarding patient education to help women recognize early signs and symptoms of preeclampsia, which could guide them to early diagnosis and improved clinical management.

Little is known about how many prenatal care providers discuss preeclampsia with their patients or if women understand what is communicated to them when such discussions occur. In response to this fundamental gap in knowledge, the Preeclampsia Foundation conducted an internet-based survey in March and April of 2008 to determine what women learned about preeclampsia in the context of prenatal care during their first pregnancy (2000-2008). The study is currently being submitted for publication, but the results were surprising and could help health care providers make informed decisions about patient education.

Only 40% of the women indicated that their prenatal care provider "definitely" described preeclampsia; 35% said they were "definitely not" given information about preeclampsia, and the remaining 16% did not remember. Of those who definitely had preeclampsia described to them, slightly more than half said they "fully understood the explanation," 37% "understood most of the explanation," while 15% either "understood some of the explanation," or did not remember.

Here is the really interesting bit: a full 75% of women who said they "definitely" received information on the signs and symptoms of preeclampsia and understood "fully" or "most" of the explanation, indicated that because of this information, they took one or more of the following actions:

Reported symptoms to their provider,
Went to the hospital,
Monitored their own blood pressure,
Complied with an order of bedrest,
Responded in some other way (e.g., made dietary changes, did their own research on preeclampsia).

However, of those who did not understand the explanations provided, only 6% took any action based on the presence of symptoms.

Survey participants tended to be well-educated and middle class, making the importance of what we learned from this online survey clear: even among well-educated, middle-to-high income women, a substantial proportion were not told about preeclampsia or did not fully understand their providers' explanations about the signs and symptoms of preeclampsia. Our findings likewise suggest that when women know how to recognize the signs and symptoms of preeclampsia and they understand the explanation offered, they are likely to act on that information and contact their provider or go to an emergency department.

It follows logically that women with fewer resources and less education, who may also be at higher risk for preeclampsia, may receive and retain even less information; and due to disparities in health care access, they may not have adequate resources to report symptoms to a provider.

Education about preeclampsia and related hypertensive disorders must continue into the post-partum period so that women can recognize prodromal symptoms of post-partum and late post-partum eclampsia. Most cases of eclampsia that develop after the first 48 postpartum hours are first seen in an emergency department. A woman with legitimate complaints who presents at an emergency department may leave untreated if the staff are emergency or trauma providers, not OB/GYN specialists. Thus, women not only need basic education in preeclampsia, but they require repeated education to ensure they understand the risks and can be empowered with knowledge that will allow them to advocate strongly for their own care.

We offer several recommendations based on our observations:

More research is needed to fully assess the health literacy, knowledge, attitudes, and behavior of pregnant women and to examine the practices of prenatal care providers;
ACOG/AAP guidelines for prenatal care should include more deliberate and detailed explanations of the hypertensive conditions of pregnancy;
At all prenatal visits, providers should clearly explain warning signs and symptoms with directions about what their patients should do if they experience or recognize any of the signs or symptoms.
All women should be hearing a strong public health message that they can and should be advocates for their own care.

Guest columnist Dr. Anne B Wallis, University of Iowa, also wrote on this topic in her blog, [bloga epidimiologica]. It's worth reading the longer version, especially if you like the science-y stuff.

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A longer article from the Preeclampsia Foundation will be posted by the Association of Women's Health, Obstetric and Neonatal Nurses (AWOHNN) in May. Here are the highlights. A survey or our members brought to light the following top 10 ways nurses can be sensitive and helpful to preeclampsia patients.

1) Thank you for educating me to know the symptoms and how dangerous preeclampsia can be.

2) Thank you for being willing to listen and learn from the women you care for.

3) Thank you for being alert so that common medical errors are avoided.

4) Thank you for being sensitive to our vulnerable emotional states.

5) Thank you for showering us with compassion and kindness.

6) Thank you for being aware that due to our complicated pregnancy we are at risk of having post-traumatic stress disorder.

7) Thank you for effectively communicating to your colleagues when you transfer our care to other nurses.

8) Thank you for being honest with us.

9) Thank you for helping us and our families cope with loss or having a baby in the neonatal intensive care unit.

10) Thank you for remembering that we may be struggling with feelings of guilt for having failed at pregnancy.

The expert and compassionate care nurses provide to women who have preeclampsia is greatly appreciated and will be remembered for a lifetime.

 

 

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Answer: Every woman who ever uttered the words, "If only I knew..." after being stricken with preeclampsia. 

A Message from Executive Director Eleni Z. Tsigas

The executive summery of the eagerly anticipated new guidelines for the diagnosis and management of hypertension in pregnancy was just published by the American College of Obstetricians and Gynecologists (the College) in the electronic version of their November journal. 

The guidelines include a recommendation to provide preeclampsia education to all patients as a means of improving pregnancy outcomes. Healthcare providers need to inform women during the prenatal and postpartum periods about the signs and symptoms of preeclampsia and stress the importance of contacting healthcare providers if these are evident. 

The College is assuring its members that this can be done without increasing patient anxiety and by using effective health communication practices. We can help with that. Our educational materials are credible and shown to be effective, even with patients with lower health literacy. Our illustrated signs and symptoms tearpad was created and tested for just this purpose. 

We consider it an important accomplishment that the College and several state initiatives now include patient education as a routine recommendation and consider it a central consideration in all discussions about patient safety and quality improvement. Patient education early in the prenatal period, during pregnancy, and again after delivery (at the start of the postpartum period) is considered a best practice. 

Despite what I believe is a nationwide movement in patient education in preeclampsia now sweeping the country, the fact remains that this will be for naught if our healthcare providers don't act quickly and accurately when sick patients present for care. Thus, our mission must continue to include education for those who care for expectant and postpartum mothers, as well as partnering with numerous professional and consumer organizations to advance quality improvement and patient safety initiatives to reduce maternal and perinatal mortality and morbidity. 

Numerous articles this month reflect the power of women and their surviving loved ones telling their personal stories and crying out everywhere: "If only I knew..." We salute the power of these collective voices and what you have already accomplished! Thank you.

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Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!

However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.

An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, and make educated decisions. And if she doesn't have the appropriate relationship with her providers, she is confident about asking for what she needs or seeking help elsewhere.

Sometimes it takes a third party to help her get what she needs. A trusted partner, family member or friend sometimes fills that void. Often, our Community Forum becomes that life-saving voice that pushes her to seek immediate medical attention and acknowledge that inner voice that says something just isn't right.

A great example is this case, when Jonathan Barker became a worried husband, got involved in his wife's care and later said, "One piece of advice that the moderators on the Foundation's Forum always shared is that preeclampsia can strike at any time and can get very ugly, very quickly. It is a piece of advice that made the difference." And if you want a laugh about this empowered dad stepping in, read about his experience shopping for nursing bras. That's one lucky wife!

A recent mom had extreme birth anxiety, which is not uncommon for preeclampsia survivors. She advocated for herself and was able to get a sedative during delivery, improving her birth experience considerably.

A mom who had lupus, putting her at much higher risk for preeclampsia, wasn't receiving the kind of care or information she should have. She changed providers thanks to the encouragement of her online support system. Later, despite having preeclampsia, she wrote, "Thank you guys so much! I couldn't have gotten to this finish line without you! I was so knowledgeable and cautious. Got that from this website!"

These stories and many more confirm the importance of sound information and strong support guiding your role as an empowered patient, one of the hallmarks of patient-centric care.

I want to thank Heather Curtis and all our Forum moderators for the smart and empathetic support they provide every day. It's not an understatement when we say they have literally saved lives!

 

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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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May and Mother's Day are so intertwined that it's hard to think about one without the other, especially here at the Preeclampsia Foundation, where we've built a nationwide campaign at www.promisewalk.org/campaign to get the word out about preeclampsia - the "thing" that for many survivors turned our entrance into motherhood into a nightmare.


I believe celebrating mothers is a commemoration of extremes. Not just because preeclampsia is an extreme condition, but because the mothers I am privileged to know represent the extremes that make up all mothers: soft and tough, nurturing and driven, catalytic and comforting, impatient and optimistic.


Next Monday, I'll be representing you to 5,000 Ob/Gyns at their Annual Clinical Meeting in San Diego. You've heard us espouse the importance of the patient-provider relationship; now we need "the docs" to embrace their half of the partnership. Who better than an "extreme" mother to tell 'em so?

And, starting next weekend, that same message about the power of knowledge - along with a clarion cry for more research to solve this puzzling problem - will be spread across this country, via The Promise Walk for Preeclampsia. Which Promise Walk are you supporting? We use the walks to force ourselves into the consciousness of our communities and to say "Do not take for granted this thing we call birth." It is can be the most beautiful thing and the most tragic thing to happen to us. Help us end the tragedy.

"Before you were conceived, I wanted you. Before you were born, I loved you. Before you were here an hour, I would die for you. This is the miracle of Mother's Love." ~ Maureen Hawkins


"Well behaved women seldom make history" ~ Laurel Ulrich

Two quotes representing who we are at the extremes. The first one, obvious. The second one, despite its Mae West undertones, I like to think of as the reason "bold" and "influential" are two of our organization's core values. We're here to be effective and sometimes that means making some noise, ruffling some feathers. I guess that brings me back to my lecture to 5,000 physicians. I hope they're ready!

There are lots of ways you can be a mother at the extremes this month.

  • Join us for one of our Twitter Chats with the March of Dimes (Thursday, May 17 at 1 PM) and with HealthyWomen.org (Thursday, May 24 at 12 noon).
  • Click to make your Facebook profile picture our Preeclampsia Awareness Month image throughout the month of May.
  • Share your story in your local community, using any of the resources available on the Awareness Month Campaign page.

We're honored to have you in our tribe. Happy Mother's Day!

 
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I often call myself the "poster child" for the power of education. When you juxtapose my first pregnancy, managed by a very nice, somewhat elderly doctor who euphemistically patted me on the head and made me feel like everything was always all right, against my second pregnancy, managed by an equally nice, albeit younger and more knowledgeable doctor, there are some startling differences beyond age and experience that have everything to do with patient-provider communication (yes, they were both men so ditch the gender stereotypes).

Both pregnancies resulted in severe pre-term preeclampsia. In the first, my baby died. In the second, my baby lived, albeit with a two-week stay at Hotel NICU. There are obviously lots of nuances to each of my pregnancies, but as I look back, I can say with certainty that one of the critical factors for a successful pregnancy is the patient/provider partnership. This sentiment is echoed in a series of "Committee Opinions" produced by the American College of Obstetricians and Gynecologists (ACOG).

What does a "patient-provider" relationship look like?

Here are 10 Things You Can Do to Be a Partner with Your Health Care Provider.

1. Trust yourself. Do not be concerned that you might appear weak, ignorant or overly sensitive for reporting symptoms you are concerned about. Expect diligence and sensitivity on the part of the provider responding to those concerns.
2. Tell the truth. Full disclosure with no "little white lies" about your physical activity, diet, drugs, medications, stress, mental illness, reproductive history, and compliance with the treatment plan are all very important. Your provider will not judge you.
3. Describe any pains or symptoms as specifically as possible. Is it stabbing or burning? Sudden or constant? Tingling or hot? Intensity, exact location, if anything provoked it and how long it lasted are all helpful indicators.
4. State up front all your concerns and desires, best accomplished by writing down your questions ahead of time. Don't leave with unspoken concerns. Do leave with notes or printed materials reinforcing what you've learned.
5. List all the medications you're taking, even vitamins and herbal supplements. Bring supplements to your appointment to help identify ingredients since those products aren't standardized. Medication errors are the largest source of preventable adverse events.
6. Be upfront about anything you disagree with or don't understand. Be sure to understand what options lie ahead if you are diagnosed with preeclampsia. Don't be scared to be honest instead of nodding your head, and then ignoring the plan.
7. Seek test results immediately if they are not provided when promised.
8. Understand the "basics" about your pregnancy body. What's your "normal" blood pressure? And why do you pee in a cup at every prenatal appointment? Which symptoms should you report immediately and what can wait for the next visit?
9. Don't be afraid to use After Hours resources for any concerns. Have phone numbers and locations handy.
10. Comply with the treatment plan. If you've followed all the advice above, you should have a plan that makes sense to you and one you're able to execute.

Do you have additional advice for engaging in an effective patient-provider partnership? Please leave a comment about what has worked for you.

To this day, I look back with great fondness on my second and third pregnancies, despite the scary repeat of preeclampsia, because of the healthy, open, trusting partnership I had with my phenomenal doctor and his like-minded staff.

 
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The October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.

These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).

In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any unsolicited explanation. I was too shell-shocked to ask any intelligent questions when she took my blood pressure a few days after I returned my second urine sample and simply told me I had "earned a vacation in the hospital." In my recollection - and that of my entire family, who shared in all the details of my pregnancy and have since been grilled on this subject - there was no mention of the word preeclampsia or HELLP syndrome until much later.

Those were the opportunities I missed. It wasn't until weeks later when I had come out of a coma and begun recovering from multiple organ failure that I saw a glimmer of my ability to advocate for myself. Growing tired of the feeding tube that was giving me sustenance (and a very obvious indication and reminder of my less-than-hopeful situation), I became committed to getting it out. I lobbied my doctors for a follow-up swallow test in the hopes that this would be the one that I would pass. I did, the feeding tube was removed, and it wasn't much longer until I was home, caring for my baby daughter, and back to a "normal life." Ultimately it was an important milestone representing the first step I could take toward setting my own recovery process.

CNN medical reporter and author Elizabeth Cohen advocates for making sure we get our business "DUN" when at the doctor's office: find out our diagnosis, understand the plan to make us better, and learn the next steps toward feeling better. She recommends the following simple questions to get the ball rolling and to gain clarity on our personal health status:

  • What's my diagnosis?
  • Which drugs should I take, if any?
  • Are there any other treatments or instructions?
  • Do I need a specialist? If so, do you have a specific recommendation?
  • How long should I wait for this treatment to work?
  • If my problem doesn't get better in that time, what should I do?
  • Am I awaiting any test results? If so, when are they due back in your office?


And, during pregnancy, the following questions may be important to ask:

  • What was my blood pressure?
  • How much protein was in my urine today?
  • Does my weight gain over the last few weeks seem okay?
  • What other symptoms should I be looking out for?

I asked none of these questions and didn't appreciate enough how the age of managed care, rushed doctor's visits, and healthcare reform might be affecting my pregnancy. It wasn't until much later when I needed hope that I began advocating for myself. Now more than ever, though, we all need to prepare to work with our doctors to get the best care we can - and to have hope that there can be a positive outcome.

 
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