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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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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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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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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Nadine Brunk, a Certified Nurse-Midwife, started a program called Midwives for Haiti (MFH). We’ve been talking to Nadine about how we can extend our work in patient and community education to prenatal care settings like those found in Haiti. I feel like we have much to learn from Nadine, as one minute with her blog will show you. Recently, she shared this amazing story with us.

It was February 5th. The pink Jeep took four midwives to do the monthly prenatal clinic at Saltadere [a town in rural Haiti]. On the way, they stopped at the Birth Center at Thomassique to drop off two nurse-midwives who were going to conduct continuing education with the birth center staff on the difference between chronic hypertension and preeclampsia and the treatment protocols for both.

Thomassique is an hour's ride from Hinche and the road is very rough. Saltadere is another hour east of Thomassique and there is no birth center there. When the midwives arrived, they set up their stations and proceeded to see 26 pregnant women and one who had a negative pregnancy test. One woman was treated with Aldomet for chronic hypertension at 20 weeks gestation. Her blood pressure came down to normal one hour after taking her medication so she went home with a month's supply.

But there were five women who were very sick. They had very high blood pressures related to preeclampsia - the major killer of pregnant women in Haiti. (In 3 of the charts I saw records of 194/120, 208/128 and 154/100.) Two of them were in labor and vomiting. Three were term pregnancies and two were preterm.

So when the Jeep stopped in Thomassique at the end of the day to pick up our midwives, Diane and Marion, they told the driver to "Prese, prese" (hurry, hurry) because they had five high-risk pregnant women to take to the hospital. Two were in labor.

It was a harrowing ride. One of the risks of moving women with high blood pressures is that they will have seizures. Quiet, still, and lying on the left side would be the safest way to transport them. But there was no room in the Jeep for them to lie down and that Jeep ride over that bumpy road is anything but quiet and still.

Diane and Marion found bags for the 2 vomiting women and tried to make others comfortable sitting on the floor with their heads in the midwives' laps. By the time the ride was over everyone on the Jeep was nauseated. The midwives had started IV's on all the pregnant women so that they would be well-hydrated for whatever needed to be done at the hospital. It was the best they could do. They feared the two in labor would deliver on the way and that the others would have seizures from the bumpy ride.

All eventually safely arrived at the hospital and were turned over to the midwives (all MFH graduates) at the maternity unit. Before the night was over 4 had delivered and were still on MgSO4 for severe preeclampsia and two preemie babies were transported to Cange. The next morning the 5th was being induced for being 2 weeks postdate and delivered later that day, still on MgSO4.

The good news is that, although we do not know the outcomes for the babies who went to Cange, we know that the other three babies and all the mothers did well and were eventually discharged. The following morning, two of the women, who were still in the same clothing from the day before, had no family to take them home to Saltadere and no clothing for their babies so Marion paid for their moto-taxi rides home and gave them cloth diapers, onesies, and receiving blankets from the MFH supply closet.

I know this is only one day and one story from Saltadere where the mobile prenatal clinic's monthly trip to Saltadere saved the lives of mothers and babies.

Nadine wants our help: “A graphic-based educational tool to use in rural Haiti about signs and symptoms of preeclampsia would be great. We teach matrones who cannot read and write, and deliver skilled prenatal care to about 500 women per month in the Central Plateau. Haitians respond well to visual learning.”


One of the benefits of the Illustrated Symptoms Tear Pad is its application in a multitude of settings and languages. With some minor language translation and a check on cultural sensitivity, we are eager to equip health care providers in low resource settings with this important patient and community education tool.

 
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By Dr. Linda Burke-Galloway ~ October is Patient Centric Care Month, a term you will likely see more of as our healthcare system moves further into the 21st century. What does 21st century healthcare look like? It means that all of your records will be computerized and not on paper. It means that you will receive your "chart" on a flash drive so that when if you leave your physician's office and go to a hospital, your health records remain with you. Gone will be the days when your labs will have to be repeated because no one can locate your prenatal chart. Repeating labs is not only annoying, it's costly.

"Patient Centric Care" means that the emphasis will no longer center on your physician. Or a hospital. Or an ambulatory care center. It will be centered on you, the patient. Why? Because at the end of the day, if you're not well, if the outcome was less than expected, then the system has failed. The $2.3 trillion dollars spent each year on healthcare has not provided a "return" for its investment.

Traditionally, the physician or healthcare provider was looked upon as an authority, but you, the patient, have now taken center stage. Under patient-centric care, healthcare providers will function more like coaches and you, as the patient, will be expected to become more involved in your care. For a pregnant mom, this is critical. Gone will be the days of physicians "rushing through patients," barely listening to the fetal heartbeats and missing important clues that could compromise your care. Why? Because of the use of electronic medical records and the new system of "pay for performance." The electronic medical records have safety measures programmed into its system making it difficult for doctors to miss important red flags. Physicians will not be paid based on their number of office visits but by the outcome of the patient. Did the care provided by the physician improve the patient's health? That is the basis by which they will be paid.

One of the main reasons for missing a diagnosis of preeclampsia is that someone is not paying attention. Somewhere during the course of your care, someone drops the ball. The blood pressure that has been creeping up for the past 2 visits is not addressed. The protein in the urine ignored. The 5-pound weight gain in one week overlooked. The new complaint of a headache not heard. Unfortunately preeclampsia does not always present in textbook-fashion in the manner that we were taught in medical school. It has many disguises and there must be a high index of suspicion for those disguises to be recognized.

In business, there is something called a "butterfly effect" where one "small" missed detail can cause big problems. The same principle can be applied to medicine. When a "small" risk factor of a patient is overlooked, it places her in harm's way. Women who are pregnant for the first time, especially those who are under 18 and over 35, are at risk for preeclampsia. All African American women are at risk. Women who have a history of hypertension are at risk. All of these patients should be duly informed at their first prenatal visit of the potential for developing preeclampsia. The purpose is not to alarm but to inform.

Patient-Centric-Care Month is a time for celebration. The patient has finally returned to center stage. Although long overdue, better late than never.

Linda Burke-Galloway, MD, MS, FACOG, is the author of The Smart Mother's Guide to a Better Pregnancy, one of the Top 3 books in our Report on Pregnancy Guidebooks. She is also an Ob-Gyn Patient Safety and Risk Management Expert.

 
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Professors Chris Redman and Isabel Walker, co-authors of Pre-eclampsia: The Facts (Oxford University Press 1992) and co-founders of Action on Pre-eclampsia (APEC) in the UK, are seeking input from members of the Preeclampsia Foundation for their latest book, The Pre-eclampsia Survival Guide.

The new book, also co-authored by Joyce Cowan, a midwife who is Director of New Zealand APEC (NZAPEC), will be a comprehensive guide to pre-eclampsia for women and midwives. It will cover everything from historical theories to current treatments; from causation to detection; from prevention to management. It will be rooted very firmly in the real experiences of women who have suffered pre-eclampsia - and that's where you come in.

The authors are keen to illustrate their key points with real life case histories gathered from several different parts of the world. You could be part of this process by contributing to an online survey. Your input will only be used for the book, not any other research studies.

The Pre-eclampsia Survival Guide is expected to be published in the spring/summer of 2013. We will be reviewing the book in draft form to ensure that North American management practices are represented, since the intended audience includes all English speakers worldwide and, of course, we will have the finished product available in our Marketplace.

Despite conflicts over the hyphen in "pre-eclampsia", our universal understanding and management of the hypertensive disorders of pregnancy is mostly aligned in high resource countries. As with most medical issues, there will always be a variety of opinions, especially in a disorder with the moniker "the disease of theories", but we expect this will be a very sought after and trusted reference book for patients and providers alike.

 

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