Patients often withhold relevant information from doctors

(Reuters Health) - - Patients commonly hold back information from doctors that could help in their healthcare, which could influence the care they receive or even harm them, researchers say.

Doctors are familiar with this phenomenon, but it’s time now to talk about why patients do this and how to spark better conversations, the study authors write in JAMA Network Open.

“It is so important for clinicians to get accurate information from their patients so they can make accurate diagnoses and appropriate recommendations,” said lead study author Andrea Levy of Middlesex Community College in Middletown, Connecticut.

“But we know that people tend to withhold information from others, and that this is especially true when it comes to sensitive information,” she told Reuters Health by email. “A lot of what doctors and patients need to discuss can be pretty uncomfortable, and that’s hard.”

Levy and her coauthors surveyed more than 5,000 adults across the U.S. in two 2015 surveys, one using Amazon’s Mechanical Turk service and the other using Survey Sampling International.

The researchers primarily asked whether participants had “ever avoided telling a health care provider” seven types of information, such as medication use, exercise frequency, unhealthy diet choices, not understanding their doctor’s instructions, disagreeing with their doctor’s recommendations, not taking their prescription as instructed or taking someone else’s prescription medication.

The survey also asked about the reasons for nondisclosure, such as embarrassment or not wanting to be judged. The average age of participants in the Mechanical Turk survey was 36, and the average age of the Survey Sampling International participants was 61.

The study team found that 81 percent of the Mechanical Turk participants and 61 percent of the Survey Sampling International participants said they had avoided disclosing at least one type of information. The majority said they withheld the fact that they disagreed with the doctor’s recommendations or that they didn’t understand the doctor’s instructions.

The most common reasons for nondisclosure included not wanting to be judged or lectured, not wanting to hear how harmful a particular behavior is, and being embarrassed. In both groups, women, younger participants and those who rated their own health as poor were more likely to say they withheld information.

“It was a little surprising how much people withheld information about pretty benign things, like not understanding their doctor’s instructions,” Levy said. “We have started to look at patient withholding of more sensitive information, like drug use, depression and suicidality.”

Levy and colleagues also want to understand the extent to which patients withhold information, including whether patients are slightly bending the truth or portraying a different reality altogether. For instance, the difference between not exercising at all and patients reporting they exercise occasionally versus daily can affect diagnoses and treatment plans, she added.

Future studies should also explore how socioeconomic status, race and gender play a role in how patients disclose information, said Dr. Arthur Elstein, a retired doctor from the University of Illinois College of Medicine at Chicago, who wrote an accompanying commentary.

Elstein’s commentary notes that the survey participants aren’t a representative sample of the U.S. population, and that, ironically, the study relies on participants to report honestly about times when they withheld information. Still, “the results may be as close to the truth as we are likely to get with ethically acceptable methods . . . ,” he writes.

“When patients don’t feel comfortable with their physicians for various reasons, they withhold information,” Elstein told Reuters Health in a phone interview. “If we make patients feel more comfortable, they might be more inclined to come forth with unflattering information, but we’re not going to change the culture of healthcare in this country anytime soon.”

Full disclosure puts the burden and responsibility on the patient, which may not be a practical way to solve this communication problem, Elstein added. Instead, healthcare professionals should be aware of the nondisclosure issue and look for ways to uncover details in a technical way, such as an impersonal online survey before face-to-face appointments.

“An awful lot in medical care depends on the patient history, and we know we’re not always getting the full story,” he said. “This confirms what we’ve suspected all along, and now we should ask both sides what we can do about it.”

SOURCE: and JAMA Open Network, online November 30, 2018.