Why Do Patients Withhold Information?
Survey respondents report embarrassment, fear of being judged by clinicians.
Most patients appeared to withhold medically relevant information from their clinicians, survey data indicated.
Among respondents to two online surveys — Amazon’s Mechanical Turk (MTurk) and Survey Sampling International (SSI) — 81.1% and 61.4%, respectively, avoided disclosing at least one type of medically relevant information, reported Andrea Gurmankin Levy, PhD, of Middlesex Community College in Middletown, Connecticut, and colleagues.
Information most commonly withheld included disagreement with a clinician’s recommendation (MTurk 45.7% and SSI 31.4%) and not understanding clinicians’ instructions (MTurk 31.8% and SSI 24.3%), the researchers wrote in JAMA Network Open.
Most common reasons for not disclosing information were:
- * Not wanting to be judged or lectured: MTurk 81.8%; SSI 64.1%
- * Not wanting to hear how harmful the behavior is: MTurk 75.7%; SSI 61.1%
- * Being embarrassed: MTurk 60.9%; SSI: 49.9%
- * Not wanting the clinician to think that they are a difficult patient: MTurk 50.8%; SSI: 38.1%
- * Not wanting to take up more of the clinician’s time: MTurk: 45.2%; SSI 35.9
“In medicine, there’s this long-standing conventional wisdom of sorts that clinicians need to adjust patient answers, like doubling their report of alcohol consumption, to get a more accurate picture of what’s going on,” Levy told MedPage Today. “We saw this dilemma and wanted to explore it.”
“Our research is highlighting a real barrier to open, honest communication between provider and patients that really has the potential to impact patient care,” Levy said. “If there are things that can be done that can increase a patient’s comfort with discussing uncomfortable information, increasing patient trust, or things of the sort, then that could actually have very real implications on a patient’s health.”
Eduardo Bruera, MD, of the University of Texas MD Anderson Cancer Center in Houston, noted that this study did not differentiate between failing to disclose information and deliberately lying to physicians. He emphasized that many patients may choose not to disclose their lifestyle habits or lack of understanding, but when a patient is untruthful after a physician inquires about a certain point in their history, it may put the patient’s health in greater danger.
“It’s our obligation as physicians to ask the questions that are important for the care of the patient,” Bruera told MedPage Today. “If the patient does not disclose well, it’s their choice, but what might be really risky is if you’re asking the right questions but getting the wrong answers.”
Robert Wachter, MD, of the University of California San Francisco, said the introduction of electronic medical records, as well as the rise of consumer-oriented medical websites that patients may turn towards for a diagnosis before they enter the exam room, may be threatening the patient-physician relationship.
If patients feel that their physician is paying more attention to a screen in front of them, he said, they will be less likely to share sensitive information. On the other hand, patients may come in with misinformation they read on the internet, which could lead to the high number of patients disagreeing with their provider’s recommendation.
“As much as we talk about empowered patients, patient-centered care, and patients as partners, in the real world there’s a power differential, and patients are often intimidated and feel like there may be some psychological risk to being fully open and honest with their clinicians,” he told MedPage Today.
Wachter said certain techniques — such as putting a computer to the side, sitting down in the exam room, and making eye contact — are all subtle ways that can help create an environment in which patients feel more comfortable disclosing information.
“Those of us in the medical education business have an obligation to teach people how to do these things because that’s a big part of being an effective physician,” he said.
MORE STUDY DETAILS
In total, 4,510 participants were included in the analysis. In the MTurk sample (2,011 patients), most patients identified themselves as white (84.3%) and female (60.7%), and most rated their health well (84.8%), with just 22.5% reporting a chronic illness. The SSI sample (2,499 patients) was older on average (minimum age 50 and mean age 61, vs 36 in MTurk), also, the majority were white (78.8%) with fewer women (51.1%). SSI participants also rated their health well (79.5%), although 39.2% reported a chronic illness.
Participants responded to seven prompts, which asked if they had ever avoided telling their healthcare provider that they:
- * Did not understand the provider’s instructions
- * Disagreed with the provider’s recommendation
- * Did not exercise or did not exercise regularly
- * Had an unhealthy diet or how unhealthy their diet was
- * Took a certain medication (i.e., deliberately did not mention a certain agent)
- * Did not take their prescription medication as instructed
- * Took someone else’s prescription medication
- * In both samples, women were more likely to report withholding information than men (MTurk: odds ratio [OR] 1.88, 95% CI 1.49-2.37; SSI: OR 1.38, 95% CI 1.17-1.64).
Relatively high rates of nondisclosure were also seen in patients who were younger (MTurk: OR 0.98, 95% CI 0.97-0.99; SSI: OR 0.98, 95% CI 0.97-0.99) and sicker (MTurk: OR 0.87, 95% CI 0.76-0.99; SSI: OR 0.80, 95% CI 0.72-0.88).
Levy and her team acknowledged limitations of the analysis, including the self-reported nature of the data and that it was collected through online samples, which were not fully representative (MTurk participants, for example, are paid to answer surveys of various kinds). Additionally, researchers did not randomize the order in which the seven questions were asked, which may lead to an order association, and the list of reasons for withholding information were not standardized across each question.