Facing the threat of domestic violence, being a survivor of sexual assault, struggling with depression or thoughts of suicide are four topics that are difficult to broach with anyone. Including those who can help you.
A new study reveals up to 47.5% of patients who feel they face one or more of these four threats do not disclose this critical information to care providers out of embarrassment, fear of judgment or the possible long-term implications of sharing such information.
Scientists at University of Utah Health, Middlesex Community College, University of Michigan and the University of Iowa collaborated on the study, which was published online in JAMA Network Open on Aug. 14.
Understanding how to make patients feel more comfortable with clinicians is key to helping patients address such life-threatening risks, says the study’s senior author Angela Fagerlin.
“For primary care providers to help patients to achieve their best health, they need to know what the patient is struggling with,” says Fagerlin. Patients who withhold they have been sexually assaulted are potentially at risk for post-traumatic stress disorder and sexually transmitted diseases, she explains. “These are numerous ways providers can help patients with such as getting resources, therapy and treatment.” She is chair of the Department of Population Health Sciences at U of U Health and an investigator with the VA Salt Lake City Health System’s Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Center for innovation.
The study reflects responses from over 4,500 people in two national online surveys from 2015. Participants in one survey averaged 36 years old, while participants from the second had a median age of 61. They reviewed a list of types of medically relevant information and asked to indicate whether they had ever withheld this information from a clinician. They were also asked to recall why.
The surveys show that 40 to 47.5% of participants chose not to tell their provider that they had experienced at least one of the four threats. Over 70% said the reason why was embarrassment or fear of being judged or lectured.
If the patient was female or younger then the odds were higher they would keep this information to themselves. What compounds this issue is that multiple studies in recent years have highlighted how health care providers downplay or fail to take seriously women’s medical complaints.
One limitation noted by the study’s first author Andrea Gurmankin Levy, a professor in social sciences at Middlesex Community College in Middletown, Connecticut, is that study participants may have not shared in their survey responses all the information they withheld, meaning that this phenomenon may be even more prevalent than the study reveals.
Levy says the survey reinforces the point that there is discomfort and a lack of trust between patients and providers. If patients filled out a questionnaire about sensitive information when they arrive at the provider’s office, might that improve the information flow? She wonders, “Is it easier to tell a piece of paper something sensitive than to look into your clinician’s eyes and say it?”
The next step in Fagerlin and Levy’s research may be contacting patients as they leave an appointment with their provider. Person-to-person interviews would permit the research team to get patients to respond while their memories are still clear.
“If we are there, we can ask them right in the moment so they can more easily put their finger on exactly what was at issue—why they didn’t share such crucial information,” Levy says.
This is the second article by this team to draw upon the 2015 surveys. The first, published in November 2018 revealed that 60 to 80% of those surveyed did not share pertinent information with their provider regarding daily issues like diet and exercise. One-third did not speak up when they disagreed with their provider’s recommendations.
Both surveys raise concerns about communication and trust between patients and their caregivers. Improving rapport falls both on providers’ and patients’ shoulders, the authors say. Providers need to establish an atmosphere where the patient feels neither judged nor rushed but rather are able to share concerns fundamental to their well-being. In addition, patients will benefit by sharing sensitive information with their providers.
Fagerlin and Levy were joined by Aaron Scherer, Brian J. Zikmund-Fisher, Knoll Larkin and Geoffrey D Barnes as authors on the study, titled “Assessment of patient non-disclosures of experiencing imminent threats to clinicians.”
Julie Kieferassociate director, Science Communications, University of Utah Health