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Most Patients Have Held Back the Truth From Doctors, JAMA Results Show

Mary Caffrey
A commentator said a solution may come from the survey method: giving patients an opportunity to disclose medical information through an impersonal instrument.
Telling doctors what’s wrong would seem to be essential to getting well. But telling the doctor everything? It turns out most of us have withheld information or lied outright, according to a new study in JAMA Network Open.1

Between 60% and 80% of patients have lied or failed to share important information with their physician, for reasons that range from being embarrassed to not wanting the information in their medical records. But in more alarming cases, patients fail to speak up when they don’t understand their physician’s instructions or disagree with the advice.

Each scenario could affect a person’s health; if patients fail to disclose the use of home-based remedies or supplements, this could interfere with medication, whereas if a patient won’t admit to alcohol or drug abuse, clinical indicators like high blood pressure may be harder to explain.

“Most people want their doctor to think highly of them,” said senior author Angela Fagerlin, PhD, chair of population health sciences at the University of Utah, which led the study. “They are worried about being pigeonholed as someone who doesn’t make good decisions.”

Researchers at the University of Utah Health, Middlesex Community College, the University of Michigan, and the University of Iowa used 2 separate surveys to gather data. The first was Amazon’s Medical Turk (MTurk), where the participants were younger (average age, 36 years), and the other from Survey Sampling International (SSI) that was aimed at respondents at least 50 years of age.

The study reported high response rates: 96% of the MTurk respondents, or 2013 people, completed the survey, and 89.2% of the SSI respondents, or 2685 people, took part. Of the MTurk group, 22.5% reported having a chronic illness, while 39.2% of the SSI group reported a chronic illness.

Overall, the MTurk survey group was more likely to report withholding information from a physician, but the patterns were similar: Sizable shares did not share their disagreement with a physician’s recommendation (MTurk, 45.7%; SSI, 31.4%), lack of understanding of instructions (MTurk, 31.8%; SSI, 24.3), or failing to take prescription medication as directed (MTurk, 22.5%; SSI, 17.6%).

Nearly identical shares did not report failing to exercise (MTurk, 22.2%; SSI, 21.6%). Also, 13.9% of the MTurk group and 8.8% of the SSI group did not report taking someone else’s medication.

The most common reasons for not being honest were the same in both groups: Patients did not want to be judged, they did not want to hear how bad a given behavior was for their health, they were embarrassed, and they didn’t want the doctor to believe they were a difficult patient. The younger group was more concerned about being perceived as stupid or having information in their medical records.

The authors said the findings were consistent with previous studies, which have often looked at failing to share a specific piece of information, such as level of alcohol use or their experience with side effects from chemotherapy. Those in poorer health were slightly, “but significantly,” more likely stay quiet.

This indicates that, “the very patients who are in greatest need of high-quality health care because of the complexity of their health may be more likely to compromise their care by withholding important information from their clinician.”

In an accompanying editorial, Arthur S. Elstein, PhD, notes that the medical community is far more aware of patients’ inclination to withhold information than was once the case. Even so, the fact that the surveys asked if patients had “ever” done so could be overstating the magnitude of the problem.2

But in conducting their surveys online, he writes, they may be pointing to a solution: Offering patients the chance to disclose medical information with an “impersonal survey instrument” may be the first step toward fixing this problem. And, Elstein writes, it likely beats the alternatives. “In my opinion, any effort to change human behavior is costly and inefficient compared with implementing a technical fix, were one available,” he concludes.

References

1. Levy AG, Scherer AM, Zikmund-Fisher BJ, et al. Prevalence of and factors associated with patient nondisclosure of medically relevant information to clinicians JAMA Network Open. 2018;1(7):e185293. doi: 10.1001/jamanetworkopen.2018.5293.

2.  Elstein AS. Threats to the validity of the clinical interview: can anything be done? JAMA Network Open. 2018;1(7):e185298. doi: 10.1001/jamanetworkopen.2018.5298.

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