Optimal maternal and neonatal health requires the expertise of maternity-care providers who base their decisions on solid research. Optimal care, however, also requires active patient participation, which is best accomplished through advocacy organisations that represent the perspective of diverse patient populations. Patients who come together under the auspices of a patient advocacy organisation, sometimes called consumer groups, can have a unique and powerful voice to advance the goals (or overcome the inertia) of the healthcare system. For pre-eclampsia, a condition that still carries the burden of no cure and seriously adverse or deadly outcomes, all three components — care providers, researchers and patients — are required to realise progress. In this chapter, we briefly describe the effect of pre-eclampsia on women, discuss the role of patient advocacy organisations, and propose a six-point call to action that can serve as a compass for patients to collaborate with practitioners, investigators, funders, non-governmental organisations, and policy makers on a set of articulated and comprehensive goals.
Introduction
Pre-eclampsia is a condition that carries the burden of no cure outside delivery of the fetal–placental unit, and serious adverse or deadly outcomes. It is well accepted that, in this setting, optimal maternal and neonatal health requires the expertise of maternity-care providers who base their decisions on solid, clinically inspired research. Optimal care, however, also requires active patient participation, which is best accomplished through advocacy organisations that represent the perspective of diverse patient populations. Patients who come together under the auspices of a patient advocacy organisation can have a unique and powerful voice to advance the goals (or overcome the inertia) of the healthcare system.
Patient advocacy organisations, sometimes referred to as ‘support groups’ or ‘consumer groups’, can define their mission in several different ways. Some organisations may focus primarily on providing emotional support and information to patients. Others may use their collective voice to embrace an advocacy agenda, primarily working to influence public policy, governmental spending and public awareness of the issue. Others define themselves as medical research organisations and, impatient with a sluggish medical research community, they focus aggressive fundraising efforts entirely on a translational research agenda that addresses critical gaps in diagnostic and therapeutic interventions, often spearheading specific research projects. All types of patient advocacy organisations play important roles.
Global health experts consider maternal and newborn health to be indicators of the strength, effectiveness and capacity of a country’s health system. In addition, the effects of maternal death on child survival and social well-being are significant. For instance, a study in Bangladesh found that a woman’s death before a child’s 10th birthday reduced the probability of the child surviving to the age of 10 from 89% to 24%. Babies aged 2–5 months who lost their mothers were 25 times more likely to die than those whose mothers were alive and, for those who lived, more likely to have less education. These findings highlight the double burden associated with maternal death. The Millenium Development Goals have set, as a target, reduction of the maternal mortality ratio by 75% between 1990 and 2015. The optimal management of women with pre-eclampsia has an important role to play in this reduction, as 10–15% of worldwide maternal mortality is the result of pre-eclampsia or eclampsia. Although 99% of maternal deaths occur in low- and middle-income countries, well-resourced countries also continue to struggle with severe maternal morbidity and some mortality related to pre-eclampsia, as well as concerning rates of fetal and neonatal complications. As 2015 draws closer, it is clear that countries are far from achieving their Millenium Development Goals target in the reduction of maternal mortality and, as such, provides the perfect time to raise the profile of pre-eclampsia and eclampsia for the mother and child.
In this chapter, we briefly describe the effect of pre-eclampsia on women, discuss the role of patient advocacy organisations, and offer a proposed call to action that can serve as a compass for patients to collaborate with practitioners, investigators, funders, non-governmental organisations, and policy makers on a set of articulated and comprehensive goals.
Impact
Epidemiological data conveying the breadth and depth of the effect of pre-eclampsia are detailed in the chapter on epidemiology of pre-eclampsia and the other hypertensive disorders of pregnancy in this issue of Best Practice and Research Clinical Obstetrics an Gynaecology . Suffice to say, mothers and babies are dying in large numbers internationally because of pre-eclampsia and its sequelae. The impact, however, affects many other areas: medical, psychological, sociological and financial.
Although it is unusual for women with pre-eclampsia to die in well-resourced settings, they are more likely to suffer a ‘near miss’, nearly dying but surviving a complication that occurs during pregnancy or childbirth, or within 42 days of delivery. Near misses include short-term complications, such as stroke or hepatic rupture, as well as long-term complications such as chronic hypertension, renal disease, cardiovascular disease, and visual or neurocognitive impairment.
Second, pre-eclampsia can leave the mother feeling as if pregnancy complications were her ‘fault’, as if her body ‘failed’. Feelings of shame, guilt and remorse may add to her grief. Even without obvious adverse outcomes, such as the loss of a baby, sometimes the resulting dramatic or harrowing childbirth experience — not quite the expected natural or planned event — can leave a woman with extraordinary feelings of loss. She can often be confronted with a sense of inadequacy because she has been denied something she once considered to be a right of passage. Her very confidence in being a woman is compromised. Feelings of isolation, lack of control and betrayal are commonly reported. These can manifest as postpartum depression or post-traumatic stress disorder.
Third, a sociological effect on family planning decisions may occur, which can be curtailed by a history of pre-eclampsia. Partner conflict, even dissolution of marriages, sometimes occur in the aftermath of the loss of a baby or over the issue of whether to risk the life of the mother with another pregnancy. In some cultures, the father has greater fear over risking his wife’s life, whereas in other cultures the bearing of offspring or economic implications overshadow potential risks to the mother’s life. In higher resource settings, other family planning choices are confronted, such as surrogacy, adoption or permanent contraception. In the cases of maternal death with a surviving infant or other older children, caregiving decisions can often affect the extended family. All of these burdens can have distinct cultural and sociological effects on the family unit.
Finally, the economic burden born by the healthcare system can sometimes devastate a family’s personal finances related to peripartum medical interventions and the high-level care required for mother, baby, or both. These costs may continue for months or even years, particularly those associated with preterm births requiring extended neonatal intensive care stay, and those related to long-term paediatric complications. In 2002, the Department of Reproductive Health and Research of the World Heath Organization (WHO) issued an internal document entitled The global programme to conquer preeclampsia/eclampsia . In it, the authors reported the lack of adequate data about the disease’s actual economic burden, but they estimated costs to be billions of $USD annually worldwide, related to a combination of critical care costs and long-term problems in the very premature survivors. Today, our developing understanding of the additional long-term effect of pre-eclampsia on a woman’s health is likely to inflate the economic burden to tens of billions of $USD annually (personal communication).
The problem of pre-eclampsia is not going away. Epidemiological data suggest rates of pre-eclampsia are rising. This trend is related in large part to increasing rates of risk factors for pre-eclampsia, including rising rates of obesity, delayed child-bearing, increased use of in-vitro fertilisation, and the prevalence of pregnancies complicated by pre-existing medical conditions.
Impact
Epidemiological data conveying the breadth and depth of the effect of pre-eclampsia are detailed in the chapter on epidemiology of pre-eclampsia and the other hypertensive disorders of pregnancy in this issue of Best Practice and Research Clinical Obstetrics an Gynaecology . Suffice to say, mothers and babies are dying in large numbers internationally because of pre-eclampsia and its sequelae. The impact, however, affects many other areas: medical, psychological, sociological and financial.
Although it is unusual for women with pre-eclampsia to die in well-resourced settings, they are more likely to suffer a ‘near miss’, nearly dying but surviving a complication that occurs during pregnancy or childbirth, or within 42 days of delivery. Near misses include short-term complications, such as stroke or hepatic rupture, as well as long-term complications such as chronic hypertension, renal disease, cardiovascular disease, and visual or neurocognitive impairment.
Second, pre-eclampsia can leave the mother feeling as if pregnancy complications were her ‘fault’, as if her body ‘failed’. Feelings of shame, guilt and remorse may add to her grief. Even without obvious adverse outcomes, such as the loss of a baby, sometimes the resulting dramatic or harrowing childbirth experience — not quite the expected natural or planned event — can leave a woman with extraordinary feelings of loss. She can often be confronted with a sense of inadequacy because she has been denied something she once considered to be a right of passage. Her very confidence in being a woman is compromised. Feelings of isolation, lack of control and betrayal are commonly reported. These can manifest as postpartum depression or post-traumatic stress disorder.
Third, a sociological effect on family planning decisions may occur, which can be curtailed by a history of pre-eclampsia. Partner conflict, even dissolution of marriages, sometimes occur in the aftermath of the loss of a baby or over the issue of whether to risk the life of the mother with another pregnancy. In some cultures, the father has greater fear over risking his wife’s life, whereas in other cultures the bearing of offspring or economic implications overshadow potential risks to the mother’s life. In higher resource settings, other family planning choices are confronted, such as surrogacy, adoption or permanent contraception. In the cases of maternal death with a surviving infant or other older children, caregiving decisions can often affect the extended family. All of these burdens can have distinct cultural and sociological effects on the family unit.
Finally, the economic burden born by the healthcare system can sometimes devastate a family’s personal finances related to peripartum medical interventions and the high-level care required for mother, baby, or both. These costs may continue for months or even years, particularly those associated with preterm births requiring extended neonatal intensive care stay, and those related to long-term paediatric complications. In 2002, the Department of Reproductive Health and Research of the World Heath Organization (WHO) issued an internal document entitled The global programme to conquer preeclampsia/eclampsia . In it, the authors reported the lack of adequate data about the disease’s actual economic burden, but they estimated costs to be billions of $USD annually worldwide, related to a combination of critical care costs and long-term problems in the very premature survivors. Today, our developing understanding of the additional long-term effect of pre-eclampsia on a woman’s health is likely to inflate the economic burden to tens of billions of $USD annually (personal communication).
The problem of pre-eclampsia is not going away. Epidemiological data suggest rates of pre-eclampsia are rising. This trend is related in large part to increasing rates of risk factors for pre-eclampsia, including rising rates of obesity, delayed child-bearing, increased use of in-vitro fertilisation, and the prevalence of pregnancies complicated by pre-existing medical conditions.
The role of patient advocacy organisations
Patient organisations often serve as the leaders of advocacy efforts, particularly if they have a medical advisory board of good repute. Currently, the number of organisations around the world are limited ( Table 1 ), and most are situated in high-income countries. These organisations usually comprise pre-eclampsia survivors, their family members, and sometimes other stakeholders interested in this cause. With first-hand knowledge of the effect of the disease, survivors have a unique moral authority and a strong focus on patient advocacy. These patient advocacy organisations share a basic mission of patient support and information, although the size, scope and objectives of each individual organisation influences the specific programmes and services delivered.
| Organisation | Location | Mission | Website/Contact Info | Year Began |
|---|---|---|---|---|
| Preeclampsia Foundation | USA | Reduce maternal and infant illness and death due to pre-eclampsia by providing patient support and education, raising public awareness, catalysing research, and improving healthcare practices. Includes international agenda with local branches. Medical board includes 12 leading experts. | www.preeclampsia.org info@preeclampsia.org +(321) 421 6957 (phone) | 2000 |
| Action on Pre-eclampsia (APEC) | UK | Support thousands of women throughout the UK and the world each year through education programmes, training, global information distribution, and influencing medical policy and good practice. Medical advisors include Professors Chris Redman and James Walker. | www.apec.org/uk info@apec.org.uk 01162608088 (phone) | 1992 |
| Australian Action on Pre-eclampsia (AAPEC) | Australia | Educate, inform and advise the public and health professionals about the prevalence, nature and risks of pre-eclampsia and eclampsia; provide support to patients and their families; campaign for greater awareness and action to improve methods of detection and treatment; promote research. Medical advisors include Professor Shaun Brennecke. | www.aapec.org.au info@aapec.org.au | 1999 |
| New Zealand Action on Pre-eclampsia (NZ APEC) | New Zealand | Provide support, education and information on pre-eclampsia to those affected, the public and health professionals; campaign for greater public awareness and for action to improve methods of detection and treatment; promote research into the causes, screening and treatment. Medical advisors include Professors Robyn North and Lesley McCowan. | www.nzapec.com info@nzapec.com 64 95371808 (phone) | 1994 |
| Präeklampsie Verein Österreich | Austria | Provide a discussion platform for personal experiences, facilitate contact between interested parties, a medical advisory board and experts, encourage awareness and support research. Also provides basic information in other languages. | http://hellp4u.org | 2007 |
| Stichting HELLP-syndroom | The Netherland | Provide information on HELLP syndrome and pre-eclampsia and patient support, advocate for research, develop partnerships to improve attention to the condition, with a focus on after care by providing workshops and small conferences. They do not have a medical advisory board. | www.stichtinghellpsyndroom.nl info@hellp.nl | 1994 |
| Arbeitsgemeinschaft Gestose-Frauen e.V. | Germany | Provide information on nutrition and pre-eclampsia, based on the research of the late Dr Thomas Brewer, advocate for adequate protein, salt-to-taste diets and vitamin supplementation; provide patient support for survivors, including hosting annual meeting. Medical advisors include Doctors Alexander Schmitt and Brigitte Leeners. | www.gestose-frauen.de info@gestose-frauen.de | 1984 |
| Sulle Ali di un Angelo | Italy | Provide psychological and peer support among pre-eclampsia victims and people who have suffered the loss of a baby, raising awareness of necessary healthcare, associated with neonatal mortality and high-risk pregnancies, while acting as a link between providers and patients. Medical information supported by Associazione Italiana Preeclampsia (AIPE) and Professor Andrea Tranquilli. | www.sullealidiunangelo.it associazione@sullealidiunangelo.it 39 040761040 (phone) 39 3771263366 (mobile) | 2005 |
| Association de Prevention et d’Actions contre la pre-eclampsie (APAPE) | France | Educate healthcare providers about the care of patients with pre-eclampsia and its complications. Provide information and moral support to patients. Seeks partnerships to contribute to research agendas. | www.eclampsie.moonfruit.fr 33 0648790216 (phone) | 2010 |
Every day, obstetricians, gynaecologists, perinatologists, nurses, midwives and other women’s health specialists take advocacy action on behalf of their patients, by urging the hospital, health plan, or other care providers to take some action to help the patient. However, pre-eclampsia policy advocacy goes beyond this individual advocacy and can be defined as the actions taken to influence local, national or global policies and programmes to prevent or reduce suffering from pre-eclampsia and related conditions in pregnancy and delivery.
Advocacy differs from scientific discovery. Science is generally inductive, beginning with clinical observations and then testing hypotheses to draw evidence-based conclusions. However, ‘Knowledge alone is insufficient to change policymaker behavior,’ according to Kraig Klaudt, President and CEO of Advocacy Action Network in Sao Paulo, Brazil. Advocacy aims to create social pressure, political accountability, and policy change in order to attract resources, shape agendas and remove sociocultural barriers.
Advocacy requires a specific expertise that is not always present or even desired by scientists. Thus, it is recommended that the scientific community build alliances with advocacy organisations to affect change. Advocacy and communication practices are needed, for instance, to enable knowledge translation. A notable example is the Pregnancy and Childbirth Group of the Cochrane Collaboration of Systematic Reviews; a consumer representative is part of the review process for all of the Cochrane reviews, and the information is aimed to be accessible to women themselves, and not just to health professionals.
Empowered patients, working within their local communities and armed with the internet and other electronic means with which to gather data, are taking their causes and concerns to the blogosphere, posting to websites and electronically reaching out to engage policymakers and the media. In so doing, individuals build a community of advocates that can rally around specific objectives. In other disease communities, such as AIDS and breast cancer, the power of a unified patient voice has literally changed the course of the disease’s prognosis.
In summary, healthcare providers need to capture this energy and work in partnership with patients and patient advocacy organisations to enhance programmes and positively influence policies that will better serve women and their families.
An articulated plan
The Preeclampsia Foundation in the USA has articulated a ‘call to action’ that can serve as a unifying scope of activity for all stakeholders in the field of pre-eclampsia. The plan involves activity in six specific areas: (1) patient awareness; (2) provider education and training; (3) research (building the science base and accelerating the translation and dissemination of knowledge); (4) overcoming barriers by replicating (rather than re-creating) effective programmes; (5) changing perceptions of pre-eclampsia; and (6) influencing public policy. Improved collaborations can better achieve all of these activities. Each area is discussed below.
Enhance patient awareness
Pregnant women generally have a poor understanding of pre-eclampsia. Yet, patient knowledge about its signs and symptoms is a critical factor in timely diagnosis and positive health outcomes ( Fig. 1 ). Evidence shows that women are not routinely informed and, when they are, low health literacy can have a detrimental effect on patient understanding.
