(WOMENSENEWS)–Media attention has been building about the connection that researchers have found between preeclampsia and autism, another reason more approaches are needed to address this leading cause of maternal mortality and morbidity.
Even though preeclampsia affects 5 percent to 8 percent of all pregnancies, most people don’t know what it is. If they do know, it may be because they watch “Downton Abbey” and remember it killed the beloved character Lady Sybil Grantham shortly after childbirth.
Preeclampsia is a condition characterized by hypertension and end-organ dysfunction. The accuracy of the medicine portrayed in the “Downton Abbey” episode was wobbly, but the gravity of the situation was accurate. Today, preeclampsia is a leading cause of maternal morbidity and mortality worldwide.
In addition, mothers who had preeclampsia during pregnancy are up to twice as likely to have a child who develops autism spectrum disorder than women who do not have it. The sicker the mother is, the more likely it is that autism may occur.
Even with advances in medicine there are no measures to prevent preeclampsia today, but there are treatments that can attenuate the risk of the most serious outcomes. Often, the deadliest events associated with preeclampsia, like seizure, stroke and liver rupture, are heralded by symptoms like headache, abdominal pain or visual changes. Women who are diagnosed with the condition and receive timely and proper surveillance have fewer adverse events than those who do not. In fact, up to half of the most serious outcomes may be prevented with proper patient education and counseling.
Risky Lack of Knowledge
In 2009, I interviewed 120 English-speaking pregnant women who received prenatal care in an urban university-based medical center about preeclampsia. I found that less than half could describe the implications or symptoms associated with the syndrome. Furthermore, they were not able to consistently identify that medical care should be sought in the presence of such symptoms. This lack of knowledge has the potential to leave women without the benefits of what medicine has to offer, a situation analogous to that of Lady Sybil.
I also found that women were better informed about preeclampsia if they received information in a manner which incorporated lay input and considered the level of literacy of the audience. Compared to women who read the standard patient pamphlet developed by the American College of Obstetricians and Gynecologists, women who read a tool my research team and I created, we believe, demonstrated a better overall understanding of the disease.
The tool we made was a graphics-based, single-sided preeclampsia education card that evolved through a process that incorporated feedback from three content experts and focus groups. The focus group participants were recruited from a university-based obstetrics and gynecology clinic that primarily serves low-income patients. This group was chosen because the participants were more likely to have relatively low literacy skills. The objective of the focus groups was to gain insight into whether and how the tool should be altered to assure the appropriate messages were being relayed to patients.
Creating and tailoring the educational tool to those with low literacy allowed for the broadest application. The card’s form was guided by the results of prior research that exemplified how best to communicate information to individuals and take the varying degrees of health literacy into account. For example, a patient’s understanding of proper use of medication is improved with the incorporation of explicit language such as: “Do not use if you are pregnant, think you are pregnant, or breastfeeding.” These direct statements appear in conjunction with icons developed with patient feedback that depicted a clearly pregnant woman with a line through the image.
Important to Know Warning Signs
The frequency of adverse maternal and perinatal outcomes remains markedly lower in the United States than in developing countries (or as compared to the early 20th century England), largely because of the greater number of available resources. To benefit from these resources, however, women must first seek care. This means women with preeclampsia must understand and recognize the warning symptoms associated with the disease, but the study I conducted shows that many women do not.
Pregnant women, of course, are not the only ones who may benefit from improved patient education tools. Ninety million people, or nearly half of all American adults, have difficulty understanding and responding to relevant health information, including something as seemingly simple as reading the dosing instructions on a box of Children’s Tylenol. Each year, this contributes to an estimated $100 billion in extra health care costs because people do not receive the care they need.
With so much confusion among patients, extra medical costs and negative health outcomes, it is vital that the medical community make adapting health care messaging to meet patient needs and comfort level a priority. Unless the medical system provides information in a way that is comprehensible to all, the options for care and treatment for the less informed echo what would be available to Lady Sybil and the other inhabitants of The Abbey.