Eleni Tsigas, Executive Director of the Preeclampsia Foundation
[person name=”Eleni Tsigas” title=”Executive Director of the Preeclampsia Foundation” picture=”http://www.isshp.org/wp-content/uploads/2017/05/Eleni-Foto-150×150.jpg” pic_link=”” linktarget=”_self” pic_style=”none” pic_style_color=”” pic_bordersize=”0″ pic_bordercolor=”” pic_borderradius=”0″ social_icon_boxed=”” social_icon_boxed_radius=”4px” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=” ” email=”” facebook=”” twitter=”” instagram=”” dribbble=”” google=”” linkedin=”” blogger=”” tumblr=”” reddit=”” yahoo=”” deviantart=”” vimeo=”” youtube=”” pinterest=”” rss=”” digg=”” flickr=”” forrst=”” myspace=”” skype=”” paypal=”” dropbox=”” soundcloud=”” vk=”” class=”” id=””]Note: This is a collection of musings written by a survivor, a spokesperson, and likely an “n” in one of your studies. I am not a scientist.[/person]
Therein lies the tensions in our work. And the delays in our progress.
Frustrating. Confusing. Especially to patients and consumer advocates watching either from the sidelines or even at the tables of inquiry and study design.
It’s hard not to go to national or international meetings, as I often do, and leave enthusiastic at the growing number of presentations on the topic of preeclampsia. It’s also not uncommon to leave frustrated that some of the same basic clinical questions debated at the 2004 ISSHP conference, my first, in Vienna, Austria, are still being discussed – how or if to measure proteinuria, a diagnostic test that has since been proven only mildly effective in predicting outcomes but still super important for alerting clinicians to danger.
Debate
Massive studies like HYPITAT have told us when to deliver preeclamptic woman. Choosing to follow that guidance becomes a highly nationalized topic of debate. Studies in Europe testing the efficacy of a newer, possibly more sensitive and specific (than the antiquated and arbitrary BP measurement) diagnostic test proved strong enough to adopt in the UK’s standard of care. Not so for the rest of the world. In the US, our national task force on preventive services very recently deemed routine blood pressure measurement a standard of care for preeclampsia screening. Shattering any myth this was already being done for the past 60 years! As of this writing, the world awaits the published results of the ASPRE study – a powerful (n=30,000+) study designed to tell us more specifically if, by when, how much, and for whom aspirin really should be taken. Assuming positive results, will health systems and national guidelines respond with recommendations or demand more local studies? How large and sound does a study need to be before it is considered by recommending bodies?
Media reports out of Australia, UK, US and elsewhere all proclaim the cause of preeclampsia has been found! And they’re all different. Thus confirming an oft-repeated phrase that preeclampsia is the “disease of theories.” As David Haig, PhD, Harvard, offered in his keynote address at SRI’s 2017 meeting, “Preeclampsia research has been dominated by a search for the part that is broken (with everybody promoting their favorite broken part).”
The huge number of iatrogenic preterm births, and therefore caesarean sections, in Brazil has us all concerned. Why are those doctors and their patients insisting on pre-delivering (and adversely affecting) those young new lives? The current prenatal model of care is being called into question in some parts of the world. Forward-looking practitioners and global health workers are wondering if women and their babies are best served by a model that leaves little room for telemedicine, earlier screening for preeclampsia, community or even home-based surveillance.
Evidence-Based Medicine
Most of us would really like to practice evidence-based medicine, so the debate often comes down to ‘how good does the evidence need to be’? Who decides what is ‘good enough’? Is ‘perfect’ the enemy of ‘good enough’ when we’re trying to improve deplorable mortality and morbidity rates?
And finally, who polices the dissemination of bad, incomplete or misguided information? Because it is, and always will be possible, to serve up data to prove just about any point-of-view. Perhaps standards of research could be created and adopted as minimum thresholds of acceptability, thus enabling implementation of research from elsewhere in the world.
As we learn more, should the field be expanding or contracting? Are ‘placental disorders of pregnancy’ a more appropriate classification, particularly since most of us working in the field care deeply about the mother AND the baby, and delivering an IUGR or SGA baby is just as unsatisfactory as delivering a healthy baby from a very sick mother. Or does such an expansion leave us even more diluted and further than ever from real solutions? Is there a unifying framework for preeclampsia research? As Haig proposed, “Is there genetic variation among mothers in their susceptibility to the preeclampsia cocktail?” It often feels like researchers are the blind men touching the elephant’s various parts and thusly defining the whole beast.
These are just some of the many questions I ponder as I look across the landscape of preeclampsia research and its clinical impact.
Discourse and Good Research
Discourse is at the heart of good research. Chafing against the stone to smooth and perfect it. But at some point the debate must cease being an exercise in intellectual gymnastics and territorialism and move us to improved delivery of care. Particularly since resources for preeclampsia research are so scarce.
Innovation is at the heart of an investigator’s intrinsic motivation, but perhaps egos sometimes get in the way of focusing resources where global validation and consensus is needed. How can we move from isolated centers of preeclampsia discovery to share more willingly and widely, accept more from others, and move that information to improved delivery of care?
One baby step in the direction of this nirvana may be aligning hundreds of organizations and key stakeholders behind a single proclamation to call attention to the gaps in research and healthcare born by mothers and babies worldwide. The Preeclampsia Foundation is honored to have first introduced this concept at the 2010 ISSHP meeting in Melbourne, Australia, and I’m thrilled to see this gaining much-needed traction as part of the inaugural World Preeclampsia Day.