January 14, 2015 — Blog Post
For Expectant Parents, How Much Information Is Too Much?
The heart of shared decision making (SDM) is providing people with balanced information about all their options for a medical issue. For something like breast or prostate cancer treatment options, this makes good intuitive sense. Who wouldn’t want to learn about each possibility and weigh the good, the bad, and the ugly?
But as I began thinking about SDM for a new prenatal genetic testing program we’re developing, I wondered: how much information is too much, especially if someone wasn’t even aware they had a decision to make? When many women find out they’re pregnant, they’re skipping along on Cloud 9. Then… pow!… they’re confronting this incredibly weighty decision. That innocent stroll just morphed into a muddy slog under the threat of a severe thunderstorm.
Prenatal testing: a changing landscape
The decision to pursue genetic testing for chromosomal conditions like Down syndrome is a relatively recent one. Just a couple decades ago, there wasn’t much screening aside from a red flag for women of advanced maternal age. Testing consisted mainly of amniocentesis, an invasive procedure that comes with a small risk of miscarriage, so it was only done for high-risk pregnancies.
Technology advanced rapidly. In 2007, the American Congress of Obstetricians and Gynecologists (ACOG) recommended that ALL women be given the option to screen for chromosomal problems. As recently as 2012, ACOG began recommending a newer form of screening, cell-free fetal DNA testing, to high-risk women. This test is more sensitive and has fewer false positives — in fact, experts believe it will be extended to all women once it has been validated among lower risk populations.
In short, screening options have multiplied, yet clinicians often don’t have time to explain the accuracy, risks, benefits, and cascading decisions involved with this extremely sensitive topic.
Are parents ready to make the decision to have a prenatal screening or diagnostic test?
It’s a tough choice for many people, and requires asking yourself questions like:
- Would I want to find out before my baby is born if he or she has a serious, potentially fatal, medical problem? Would this help me better prepare?
- Would I risk miscarriage to find out for sure with amniocentesis or chorionic villus sampling?
- If I found out there was a problem, would I consider not keeping the baby? Would I consider adoption?
As if those questions weren’t hard enough, to really evaluate your options you need a strong grasp of risk and probability. And even if you “understand” the numbers, what you feel about how risk is still powerful and can’t be ignored.
The perfect case for a decision aid
Given all this, there’s a clear need for decision aids in this space. A decision aid is a tool to help people understand all their options, including the pros and cons and how the options fit in with the individual’s values and preferences. It’s designed to supplement (not take the place of) conversations with the healthcare team.
Since women would be getting this decision aid at their first prenatal visit, I pictured them walking in elated and giddy, and feared that after watching the decision aid that night, they’d be kept awake with anxiety.
The interviews I held with women who’ve recently made this decision eased some of my concerns. I learned in many cases, screening is simply considered “routine.” There was not a lot of hand-wringing, partly because doctors didn’t give women much information about where options could lead, preferring instead to cross that bridge if a result came back positive. So on the one hand, a decision aid could be overwhelming compared to the little information that’s given now.
But on the other hand, women wanted complete information, and they didn’t mind having it early on. (And many didn’t think their doctors did a great job explaining things, so were left looking for more answers.) Women who did receive positive screening results would have preferred to know how to interpret those numbers sooner. Fortunately, this fits in with the philosophy of shared decision making.
In two upcoming posts, I’ll explore some of the unconscious biases we accounted for in the program design — there was a lot to consider. So stay tuned. In the meantime, it’d be great to hear from you in the comments. How have you been able to strike the balance of presenting enough material without crossing into information overload?