ISSHP 2023 Patient Voices

September 21, 2023

Video Transcript

Speakers: Melissa Krawecki, Managing Director, Preeclampsia Foundation of Canada . PEARLS. Marcus Green, CEO, APEC (UK). Ashley Muteti, Founder & Executive Director, Zuri Nzilani Foundation. Sabine Foehl-Kuse, Manageress, AG Gestose-Betroffene e.V. in Germany. Candace Beoku-Betts, Research Fellow , Kings College London . Lynne Roberts, Clinical Midwifery Consultant, St George Hospital, Sydney, Australia. Laney Poye, Director of Communications, Preeclampsia Foundation

Laney Poye: Hi, I'm Laney Poye, Director of Communications and Engagement for the Preeclampsia Foundation. Thank you to the leadership of ISSHP for allowing patient voices to always be included in the World Congress. We're grateful that patients are involved in improving care from around the world. It's my honor and privilege to get to introduce this panel and to also help to include voices of patient advocacy organizations from all around the world who are doing work on behalf of patients to improve health care. We know that there are a number of challenges when it comes to preeclampsia. Sometimes patients lack the basic access to care. There's often not a knowledge of signs and symptoms. There can be difficulty in receiving the treatments that are needed. And at the end of the day, patients are left traumatized and scarred from the experience that they've had with their pregnancy and birth. It's our goal as patient advocacy organizations to be partners with the medical providers providing frontline care from around the world. There are over a dozen organizations across the globe who work together to ensure better outcomes for patients. It's my honor to get to introduce just a few of those and talk a little bit more about the work that we do at the Preeclampsia Foundation to help improve care here. You can hear from them directly.

Ashley Muteti: Hi, my name is Ashley Muteti from Zuri Nzilani Foundation here in Kenya. And one of the most popular sentiments that we hear from women is women starting their antenatal clinics late and that are very advanced age in their pregnancy. And when they do so, some of the challenges that they face is they come to the antenatal clinics when it's already too late for the doctors to do anything meaningful to save their life or the life of the baby. And that's where we advocate for preconception care and also once a woman gets pregnant, they should start the antenatal clinics immediately.

Marcus Green: We worked very hard in the United Kingdom to make sure as many women as possible know about preeclampsia and that their clinicians give them appropriate advice whenever possible. However, we do know that sometimes women don't get the message is don't hear the messages and need to hear them again. And that is why we try our very best to get messages across about preeclampsia. So people know the signs and symptoms. We constantly work on telling them what those are.

Melissa Krawecki: The most pressing patient need in my country (Canada), related to preeclampsia is awareness not only on the patient behalf, but also on the care provider behalf, that when a birthing person is attending office, having a high blood pressure, reading, experiencing symptoms that are of concern that they are taken seriously and that they are able to have their needs addressed.

Candace Beoku-Betts: Hi, I'm Candace. I'm a British obstetrics and gynecology trainee currently working in Sierra Leone in West Africa. I have a really strong interest in preeclampsia and as such, I here to represent APEC-I as an organization. We have worked the world over most recently in sub-saharan Africa. We've worked in Zambia and Zimbabwe and Malawi in Kenya and in South America, we worked in Brazil and the other side of the world we've worked in the Philippines and it is our role as an organization to try to understand the lived experiences of women who have had preeclampsia. In so many of these places, there isn't a word for "preeclampsia" and it isn't acknowledged as a disorder or a condition and in other places where there may be a word for it, it is often seen through a lens, um, a religious lens or a spiritual lens, for example, in Sierra Leone, in my context and the word for um not necessarily preeclampsia, but eclampsia is "devils sickness" and that translates to the devil's illness. And in like the most rural areas. for example, when a woman has an eclamptic seizure, it isn't like the doctor they call, it is often the traditional healer. And this just highlights the point or the work that we want to do, and that we are doing, which is to try and speak to these communities to try and understand why a a disease that is so prevalent is so little understood or acknowledged.

Lynne Roberts: In my role as a midwife and as a researcher in the preeclampsia field and also in my role as President of the Australian Action on Preeclampsia. I hear a lot of women talk about what they wish they knew: to summarize it is to say that women wish they knew about preeclampsia earlier in their pregnancy. They often don't know what it is until they're diagnosed with it. They also wish they knew what the warning signs were, what to look out for, which would have helped them know when to seek help, when to speak with their doctor or their midwife.

Sabine Foehl-Kuse: Many of the affected women do not understand why they are sent home so early, only a few days after birth, after having been so severely ill and sometimes even without medication or never mind information on when they have to see a doctor.

Laney Poye: In the United States. Many women never hear the word preeclampsia until the first time that they're diagnosed. At the Preeclampsia Foundation, we're working hard to change that through patient education being included at every prenatal visit, making sure that patients know the basic signs and symptoms of preeclampsia. And that providers emphasize that routine blood pressure checks are an important part of patient care.

Marcus Green: I think the most pressing patient need in the country at the moment when it comes to preeclampsia here is that we do more research, we find out more about it. We learn more every day and the more we can build on that knowledge, the more that we can understand the condition and we can help women to get the support and care they need. We're very lucky in the United Kingdom. We have a fine national health service, so women do have access to good quality care, but it can always be better uh and well, we we continue to work hard to provide women with the very best care that we can.

I'm Amanda Davidson. Hi, I'm ann Marie Hennessy and we are pearls. I had preeclampsia when I was pregnant about 20 years ago. Back in 2000 and Anne Marie was my doctor at the time. Um following having preeclampsia, I decided to try and do something about that. And with Anne Marie we established pearls Which stands for "Preeclampsia Research Laboratories" 20 years ago. And we are celebrating our 20th anniversary on world preeclampsia day [video recorded on May 22, 2022] with a gorgeous lunch here in Sydney to raise awareness and to continue with the important fund fundraising work that we do. And my research team have a PhD scholarship funded annually by the pearls community that Amanda has rallied around her. We can't thank her enough but we wish everyone around the planet would rally behind pearls to get rid of it because it needs to be gone here here and we hope that you all enjoy World preeclampsia day, spend some time talking to one another about preeclampsia, about its devastating effects on families, mothers and babies. Um and just try and get behind the, the scientific communities in your area so that you can make a real difference in terms of pregnancy outcomes for women and their families.

Lynne Roberts: I think one of the really important things that women need is to be informed, well informed, uh even prior to pregnancy about preeclampsia, what it is, what, what it can mean for their pregnancy and they also want to be informed about what will happen next time, particularly around. "should there be a next time?" And is there any way of preventing or predicting it? So, I think informing the women is what really needs to be done.

Laney Poye: One of the most common themes across the globe for patients who have experienced preeclampsia is the mental burden that it causes. Many women go from having a very normal pregnancy experience and suddenly find that they are having a medical emergency because of preeclampsia, HELLP syndrome, and other hypertensive disorders of pregnancy. It's important to recognize that these experiences unite patients from every corner of the globe. You will find more commonalities between women who have experienced preeclampsia than differences because of their geography.

Ashley Muteti: Women who have gone through preeclampsia, experience a lot of mental health challenges. And this is because the society has sidelined this particular type of women. As we know, women who have gone through preeclampsia can lose the baby so they can experience infant loss. They can experience pregnancy loss. They can also experience preterm, birth and this can be subsequent pregnancies. And due to this particular issues that affect the woman because of preeclampsia, the women are at a very vulnerable point in their lives where most of them have lost their marriages in Africa and here in Kenya, children are considered as a sign of wealth as a sign of continuity in the family tree. And so when a woman constantly loses the pregnancy or constantly loses a baby, an infant due to preeclampsia or gives birth pre-term, some people really considered these women as women who have been bewitched, you know, so they associate these medical conditions with witchcraft and this in turn creates a lot of frustrations to the women. Uh they are degraded in the society. Women do not want to be associated with them in the community. And so they leave them sidelined. And this creates a lot of mental health issues that these women need to deal with every single day.

Sabine Foehl-Kuse: Most of the women feel badly informed about preeclampsia and not looked after very well. Little is done in our country so far. And most of the sufferers would not even think of psychological support until they develop PTSD. And therefore many of them run into PTSD.

Candace Beoku-Betts: And so across multiple sites, we have held policy labs and these policy labs have been a melting pot of ideas and viewpoints including policy makers, health care workers, religious leaders, traditional healers in many cases and community representatives and community leaders. I think two point definitely always stand out the first being the importance of getting the basics, right? And by the basics, we mean being able to get the simplest tools i.e. accurate, safe blood pressure and blood pressure meters around the countries and educating healthcare workers on how to use them. And also importantly, educating healthcare workers on how to act on the results and triage women appropriately and get them to the centers that they need that they need for appropriate action such as delivery of the baby. And also, as we've mentioned in the previous question, education of not only patients or stakeholders and women and their families, but also health are workers.

Laney Poye: One of the most important thing that patient advocacy organizations can do is make sure that families who have experienced preeclampsia are aware of the long term heart risk. We are a convenor of patients who have been through preeclampsia and it's a place where we can do a lot more work to help modify risk factors and help women to improve their health in the long term for them and for their children. We hope that by bringing our voices together and amplifying the message around long term cardiovascular disease that we can help prevent some of these patients from having additional complications throughout their lifetime.

Melissa Krawecki: Women in my region are not aware of the long term impacts and risks of preeclampsia. I myself, eight years after being diagnosed with preeclampsia attended my very first preeclampsia Promise Walk. And as I was walking along the pathway, the organizers had set up posters on the wall and they had the risk factors of preeclampsia written very clearly on the posters and I stopped absolutely in my tracks and my jaw dropped. I had been in full support midwifery obstetrical and family physician care since my experience with preeclampsia, and no one had told me the risk factors and the long term impacts that preeclampsia would have on my health and that that then fell on me to reach out to my primary care provider and say "what screenings do we need to be doing?" "What routine do we need to be doing to ensure my health and wellness?" In the long term, I was fortunate that I had a primary care provider I could reach out to and have that conversation with and begin to make sure that I was well taken care of. But truly as someone who works within the field and is well connected within the preeclampsia community. I myself didn't even know the long term risks of preeclampsia - it is not something that is discussed and it is a very large concern for the women in our region.

Candace Beoku-Betts: Given the lack of understanding of preeclampsia, it is not a surprise that many women are, aren't aware of the fact that preeclampsia or hypertensive diseases of pregnancy equate to a much longer term health consequences. However, it is really important to also acknowledge um that whilst this is an important issue, there are many more fundamental issues that first need to be addressed within preeclampsia advocacy.

Laney Poye: One of the most pressing patient needs that we hear over and over again at the Preeclampsia Foundation from patients here in the US as well as from around the globe is that they need support that having navigated their preeclampsia experience. They're unsure what next steps to take. As patient advocacy organizations, we can be the convenor of information of research, of clinical care practices to help guide patients into their next pregnancy or into their long term health.

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