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Afraid to Get Tested? Slow Down and Think About It

Many patients are eager to search bottomless troves of health information on the Internet. But when it comes to learning whether they are at risk for certain diseases by getting a medical test, millions would rather just not know.

According to the Centers for Disease Control and Prevention, one in three patients infected with H.I.V. do not get tested in sufficient time to benefit from existing treatments. The research literature is rife with studies of low rates for colonoscopies, mammograms and an array of genetic testing.

Now researchers in the psychology department at the University of Florida have been trying to find ways to help such patients change from evading testing, a phenomenon psychologists call “health information avoidance,” to seeking it.

For some 20 years, researchers have noted that despite the life-prolonging value of early detection in countless illnesses, many people are reluctant to be tested. Even after they have been tested, many choose to not find out the results.

When researchers ask people why they resist getting tested, reasons like cost, ignorance of the disease’s facts and intrusiveness of the procedure are often cited. But one of the most common barriers to being tested — or finding out the test results — is fear.

For the patient, many tests are invasive and time-consuming with the possible “reward” being bad news, said Dr. Anthony L. Back, an oncologist at the University of Washington School of Medicine who specializes in doctor-patient communication.

The patient’s view, he said, is very different from that of most epidemiologists, “who say that through early detection, the population benefits. The gap between those two stories is why everyone is not rushing to have their colonoscopies or mammograms.”

The University of Florida psychologists carried out a series of experiments that sought to address that divergence, asking “How can we get people to put aside their emotions and fears and receive potentially bad news about their health?” said Jennifer L. Howell, a graduate student and lead author of the study, along with James A. Shepperd, a professor of social psychology.

In their most recent work, piblished in the journal of Psychological Science, they tried an approach called contemplation, a psychological technique that gets subjects to identify their qualms and think about them. 

Psychologists who study decision-making typically use terms like “fast” and “slow” and “hot” and “cold” to distinguish a snap, emotionally driven process from one that is rational and analytic. One process is not unilaterally more sound than the other: gut instincts may often lead the decision-maker to a good result, while the analytic path may be never-ending if the would-be decision-maker gets stalled by over-thinking.

With health care decisions, said Ms. Howell, patients “make decisions often geared to emotion and protecting the self where it is right now, not in the long term” – the fast, hot impulse. If patients were led to try contemplation, a slower, cooler, more considered route, would they reach a different decision?

In one experiment, the researchers asked 130 adults whether they wanted to learn their lifetime risk of cardiovascular disease – a serious illness, but one which patients can take effective measures to mitigate. Half the group was given a contemplation exercise: they were asked to list three reasons to learn the results and three reasons not to learn them, and to rank the importance of each reason. The control group was simply asked to list eight facts they knew about cardiovascular disease.

Then each group chose whether they wanted to learn their risk.

In the group asked to examine their motives, only 28 percent chose to avoid learning their risk. In the other group, 55 percent did not want the information. The contemplation group, prompted to consider more carefully their own reasoning, had been led to take a slower, cooler approach.

Researchers tried a different experiment. They gave a presentation about a made-up disease called thioamine acetlyase (TAA) that, they said, led to early death and afflicted 20 percent of college students, though it could be treated by taking a daily pill. (The fictitious TAA has been used in behavioral  studies since 1986.)

Once again, the contemplation group listed reasons for and against learning their risk, while the control group simply gave eight facts they had learned about the disease. Contemplation had a similar effect: afterward, only 20 percent of the subjects chose to avoid learning more about their personal risk, compared with 53 percent of the controls.

But when, in a separate experiment, the researchers presented TAA to other subjects, this time describing it as an untreatable illness, contemplation had no effect: the percentage of subjects who were willing to be tested did not budge.

“There are times when information-avoidance doesn’t get reduced because of contemplation,” Ms. Howell said. “When a disease is incurable, people may think that the benefit of knowing doesn’t outweigh the cost of not knowing.”

Many serious illnesses, however, can be managed or averted with early detection. The experiments showed that when people had the opportunity to slow down and contemplate their fears, they often were more likely to move past their initial terrors and see that critical health information could be not just frightening, but empowering.

Amy McQueen, a social psychologist and assistant professor in the School of Medicine at Washington University in St. Louis who specializes in health behavior research, said that to combat fear and uncertainty associated with screening for life-threatening illnesses like cancer, many people say to themselves, “ ‘I feel fine, I don’t want to buy into the hype that I have to do all these tests.’ The tests threaten their equilibrium and identity.”

But, Dr. McQueen said, “if we could prime people” with approaches like contemplation, giving them the chance to slow down and think things through, they might be more willing to risk learning valuable information in a timely fashion. “It makes practical sense,” she said.

The intervention studied by the Florida researchers, she noted, occurs at the beginning of a series of health care decisions that patients must make: getting tested, learning results, changing behavior that might affect the outcome of an illness.

Dr. Back, the oncologist, said motivating patients at every step was a challenge. “How do we incentivize people in service of their health that doesn’t have a short-term pay-off but has a long-term pay-off?”

The contemplation interventions worked in a research setting. But would such exercises, or similar conversations, translate in a real clinic?

He felt that the Florida model pointed the way for individual practitioners to do exactly that. “We need to help people sit with the scary things in ways that will help them make really good decisions,” he said.

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