Half of Patients Don't Tell Doctors Life-Threatening Details

Marcia Frellick

August 14, 2019

Almost half of patients may be withholding information that could threaten their lives, a new study suggests.

Responses from 4510 people in two national online surveys indicate that up to 47.5% did not share critical information with their care providers in one or more of four categories that could pose an imminent threat: potential for experiencing domestic violence; survival of sexual assault; struggles with depression; or suicidal thoughts

Andrea Gurmankin Levy, PhD, from Middlesex Community College in Middletown, Connecticut, and colleagues, report their findings in an article published online August 14 in JAMA Network Open.

"For primary care providers to help patients to achieve their best health, they need to know what the patient is struggling with," senior author Angela Fagerlin, PhD, with the Department of Population Health Sciences at the University of Utah in Salt Lake City, wrote in a press release.

Patients who have been sexually assaulted, for example, could be at risk for post-traumatic stress disorder and sexually transmitted diseases, she explained.

The research points to the need for building trust and improving communication between clinicians and patients.

Prior research has shown that patients often keep quiet about lower-stakes behaviors, such as lack of exercise or poor diet, but little was known about disclosure rates for factors that could be life-threatening.

For the current study, Levy and colleague analyzed data from 2011 US adults recruited from Amazon's Mechanical Turk (MTurk) and 2499 recruited from Survey Sampling International (SSI). The average age of participants was 35.7 and 61 years, respectively.

Participants in both surveys, taken in 2015, were asked, as part of a larger questionnaire, to look at a list of medically relevant information categories and indicate whether they had ever kept that information from a clinician and if they had, why.

In both surveys, domestic abuse was the factor most often not disclosed (42.2% in MTurk and 42.3% in SSI).

In the MTurk sample, the next highest rate of nondisclosure was depression (38.1%), followed by suicidal thoughts (37.8%), and sexual assault (28.8%). In the SSI sample, the next highest nondisclosure area was sexual assault (41.6%), followed by suicidal thoughts (37.0%), and depression (29.0%).

Fear of Being Judged

More than 70% of those who withheld information said they did so because of embarrassment. Several other reasons were cited.

Table. Reasons for Nondisclosure of Information

Reasons for nondisclosure MTurk Survey (%) SSI (%)
Being embarrassed 72.7 70.9
Not wanting to be judged or lectured 66.4 53.4
Not wanting to engage in difficult follow-up* 62.4 51.1
Not wanting the information in their medical record 57.1 52.7
*Difficult follow-up could be "taking antidepressant medication or seeing a therapist," the authors state.


Female patients and younger patients were even more likely to withhold the information, say the authors.

Levy notes the problem may be even worse than the study suggests because it is likely that survey respondents may not have reported all the information they have kept from clinicians.

She suggests that perhaps patients should be given the opportunity to write about sensitive issues when they come in for their appointment.

"Is it easier to tell a piece of paper something sensitive than to look into your clinician's eyes and say it?" she asks in the press release.

The next step in this research, Levy said, is to interview patients just as they leave an appointment to get a clearer picture of what is being withheld and why, while memories are fresh.

"If we are there, we can get it right at that moment when they can put their finger on exactly what was at issue — why they didn't share such crucial information," she says.

The study was funded by Fagerlin's faculty research funds, which were provided by the Division of General Medicine, University of Michigan. A coauthor has reported receiving grants and personal fees from Pfizer and Bristol-Myers Squibb; personal fees from Janssen, Portola, and AMAG Pharmaceuticals; and grants from the National Heart, Lung, and Blood Institute and Blue Cross Blue Shield of Michigan outside the submitted work.

JAMA Netw Open. Published online August 14, 2019. Full text

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