Talking about risk with your patients? Try these tips
From the September ACP-ASIM Observer, copyright © 2002 by the American College of Physicians-American Society of Internal Medicine.
By Jason van Steenburgh
Joel Gallant, FACP, an HIV clinician at Johns Hopkins University in Baltimore, faced a dilemma when one of his HIV-positive patients asked about his risk of transmitting the virus. The patient was on highly active antiretroviral therapy and had an undetectable viral load, making it less likely—but not impossible—for him to transmit the virus.
While Dr. Gallant didn't want to lie and say that transmission is unrelated to viral load, he worried that risk statistics could give the patient the false impression that he could not transmit HIV to others.
His solution? He explained that genital fluids contain viable HIV virus, even in people with undetectable viral loads, and that viral load could increase between clinic visits. This approach allowed him to educate the patient about the importance of practicing safe sex in a way that statistics would not.
Risk is an issue for every patient, regardless of medical condition. Although patients may not always ask you for numbers, they often want to know what to expect. That's why you need to understand how to communicate risk to patients without confusing or misleading them.
Here are some tips you can use to talk to your patients about risk and clear up some common misperceptions.
Stick to the absolute. When discussing treatments, focus on the absolute risk reduction, rather than comparing risk reduction relative to other treatments. Focusing on absolute benefits allows patients to place a concrete value on a specific treatment, rather than on a more confusing comparative value.
An analysis in the June 5, 2002, Journal of the American Medical Association (JAMA) found that studies in the top medical journals (including JAMA) overwhelmingly focus on the relative benefits of treatments rather than their absolute benefits. For example, a study will claim that drug X reduces disease risk 50% better than drug Z. Only in the fine print, however, do you find that drug X really cut risk from 4% to 2%. The authors of the June article concluded that numbers describing relative risk reduction mislead readers by making an effect look stronger than it is.
When you look at a medication's absolute benefit rather than the relative benefit, the risk of certain side effects (typically expressed in absolute numbers) can suddenly seem unacceptable. For example, a drug might lower the absolute risk of heart disease by 7%, but cause insomnia in 25% of patients who take it.
Clinical trials and drug ads often indicate treatment benefits using more favorable relative numbers, but you should avoid them when discussing risk in order to better quantify a treatment's downside.
Hosein Tirgan, MD, who advised patients on chemotherapeutic options for 12 years in Margate, N.J., takes that caution a step farther. "Using relative numbers to persuade someone to undergo treatment for any reason is unethical," he said.
Steven Woloshin, MD, and Lisa M. Schwartz, ACP-ASIM Member, general internists at White River Junction VA Medical Center in Vermont who have studied risk communication extensively, believe that when possible, "the best thing to do when giving numbers is to give event rates. Just say, 'This is the chance of the outcome if you do X'—such as take a drug or have an operation—'and this is the chance if you do not.' Event rates are a simple way to convey all the information at once."
Specify what is at risk. When discussing risk, patients often get confused about exactly what is at risk. Start by clearly identifying the risk you're discussing. If you're talking about Hodgkin's disease incidence and Hodgkin's mortality, for example, make sure your patients understand the difference between the two.
Dr. Gallant often has to discuss hypersensitivity to the HIV antiretroviral medication, abacavir. Hypersensitivity is not really dangerous, he said. People get sick until they stop the drug.
Problems arise, however, when patients learn that people have died after experiencing a hypersensitivity reaction. "They don't realize that death occurs only when people restart the drug after a reaction," he said. "The 2% to 5% risk of hypersensitivity gets incorrectly translated into a 2% to 5% risk of death, which makes them understandably worried about taking the drug."
It's also important to clarify that risk percentages refer to proportions of a population affected, not the magnitude of the effect itself. If a drug increases the risk of dry mouth by 20%, for example, some patients may think that every patient who takes that drug will have a 20% drier mouth.
Dr. Tirgan suggested clarifying the issue for confused patients with the following example: "There is always a percentage of pregnant women in Philadelphia at one time, but each individual woman is either pregnant or not."
Identify study participants. When evaluating numbers from a specific study, make sure the participants in the study are similar to your patients.
When counseling HIV patients, for example, Dr. Gallant often has to reassure patients that statistics they've read in the newspaper don't always apply to them. Several years ago, he received dozens of calls from patients who read that antiretroviral therapy failed in half of people who took it. His patients interpreted this to mean that their own therapy had a 50/50 chance of working. He had to explain that these numbers came from a clinic where many patients don't adhere to therapies and many were treated with therapies that were suboptimal because of previous problems with drug resistance.
Emphasize that statistics aren't predictive. Even when a number is accurate and your patient fits a study's demographics, be sure to explain that a statistic cannot predict a specific patient's outcome.
Discussing percentages can cause patients to be falsely secure or unnecessarily alarmed, Dr. Tirgan warned. He places percentages in the context of patient populations: "The odds are on your side. If we get 100 patients like you, the same age, with the same extent of disease and we provide this treatment, it works for around 70 of them. However, there is no way to know whether you would react like those 70 if you had the same treatment."
Avoid unequal denominators. When making comparisons, compare apples with apples by using numbers with the same denominator. Never mention a number without answering the question, "Out of how many?"
Keep in mind that most patients associate larger numbers with greater risks. "One in 100 Americans" and "2.7 million Americans" may mean the same thing, but they convey different impressions.
In a study published in the December 1997 issue of Applied Cognitive Psychology, subjects assessed the risk of 11 causes of death. They falsely concluded that a cancer that kills 1,286 out of 10,000 people is more dangerous than one that kills 24.14 out of 100 people. The reason? The first set of numbers appeared larger.
Make patients see the numbers. Many patients understand risk figures better when they can see them. In your discussions with patients, try to use graphs or charts that make the data more tangible.
Because he's often faced with questions about the implications of drug-related hyperlipidemia, Dr. Gallant said he sometimes uses a risk calculator on his handheld computer to show patients how their cardiovascular risks can change based on cholesterol, age, smoking and blood sugar control. "You can re-enter data for behaviors they can control, like smoking, and show them the difference," he explained.
Dr. Woloshin has used the National Heart, Lung and Blood Institute's online cardiac risk calculator with patients when discussing cholesterol-lowering drugs. He also suggested sending patients to the Foundation for Informed Decision-Making for videos that offer information about screening tests, with patients explaining on-camera why they chose different screening options.
Because risk statistics are rarely put into context, Drs. Schwartz, Woloshin and their colleague H. Gilbert Welch, FACP, at the Veterans Affairs Outcomes Group in White River Junction, Vt., developed easy-to read charts that place side-by-side statistics about mortality risk from various causes. The risk charts include data for a range of ages and show how many individuals in 1,000 in each age group will die of a specific cause in the next 10 years. "Posting risk charts in the office," Dr. Schwartz explained, "can facilitate explicit doctor-patient discussions about risk."
(These charts and a related article in the June 5, 2002, Journal of the National Cancer Institute, are available online.)
Be comprehensive but don't overwhelm. It's important to avoid dumping too much information on patients at once. To help patients fully understand risk, give them information in small bites so they can process what's said.
Dr. Tirgan begins most consultations with patients by outlining the natural history of the disease. This establishes a baseline of risks and expectations, and in many cases, these numbers are well-established. From there, he moves on to more detailed discussions of risk as patients ask more questions.
When discussing a patient's risk of side effects or disease outcomes, Dr. Tirgan advised physicians to talk about common risks, but to make patients aware that other events can happen. If patients want to hear about rare risks, he advises giving them detailed literature on their condition.
Make sure it sinks in. "Often patients will nod 'yes' when asked if they understand, but they really don't," said Mark V. Williams, President of the National Association of Inpatient Physicians, who has studied physician-patient communication. To ensure true understanding, "have patients repeat or 'teach back' what you've just explained to them," he said.
During chemotherapy consultations, Arnold Wax, FACP, Governor for the College's Nevada Chapter and an oncologist at the Southwest Cancer Clinic in Las Vegas, encourages patients to use tape recorders or bring family members. "The more ears the better. Family members sometimes pick up things patients might miss, or they can offer a different perspective."
Be aware of patients' personal biases. When discussing risk, be aware that patients' personal experiences, such as seeing someone die of a rare condition, will often distort their perception of personal risk.
Experts say that people tend to be more afraid of things they can't control, like brain tumors, than conditions caused by behaviors under their control, like eating habits and smoking. At the same time, many patients optimistically believe risks don't apply to them because they are somehow different. You can combat this perception by asking them why they think they are different.
"Our job is to inform," said Dr. Woloshin. "You have to give patients the information they need in a form they can understand so they can make decisions based on their values."
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