A study has found that 60% to 80% of people surveyed have not been forthcoming with their doctors about information that could be relevant to their health. Besides fibbing about diet and exercise, more than a third of respondents didn’t speak up when they disagreed with their doctor’s recommendation. Another common scenario was failing to admit they didn’t understand their clinician’s instructions.
When respondents explained why they weren’t transparent, most said that they wanted to avoid being judged, and didn’t want to be lectured about how bad certain behaviors were. More than half were simply too embarrassed to tell the truth. “Most people want their doctor to think highly of them,” says the study’s senior author Dr Angela Fagerlin, chair of population health sciences at University of Utah Health and a research scientist with the VA Salt Lake City Health System’s Informatics Decision-Enhancement and Analytic Sciences (IDEAS) Centre for Innovation. “They’re worried about being pigeonholed as someone who doesn’t make good decisions,” she adds.
Scientists at University of Utah Health and Middlesex Community College led the research study in collaboration with colleagues at University of Michigan and University of Iowa.
Insights into the doctor-patient relationship came from a national online survey of two populations. One survey captured responses from 2,011 participants who averaged 36 years old. The second was administered to 2,499 participants who were 61 on average.
Survey-takers were presented with seven common scenarios where a patient might feel inclined to conceal health behaviours from their clinician, and asked to select all that they had ever happened to them. Participants were then asked to recall why they made that choice. The survey was developed with input from physicians, psychologists, researchers and patients, and refined through pilot testing with the general public.
In both surveys, people who identified themselves as female, were younger, and self-reported as being in poor health were more likely to report having failed to disclose medically relevant information to their clinician.
“I’m surprised that such a substantial number of people chose to withhold relatively benign information, and that they would admit to it,” says the study’s first author Dr Andrea Gurmankin Levy, an associate professor in social sciences at Middlesex Community College in Middletown, Connecticut. “We also have to consider the interesting limitation that survey participants might have withheld information about what they withheld, which would mean that our study has underestimated how prevalent this phenomenon is.”
The trouble with a patient’s dishonesty is that doctors can’t offer accurate medical advice when they don’t have all the facts. “If patients are withholding information about what they’re eating, or whether they are taking their medication, it can have significant implications for their health. Especially if they have a chronic illness,” says Levy.
Understanding the issue more in-depth could point toward ways to fix the problem. Levy and Fagerlin hope to repeat the study and talk with patients immediately after clinical appointments, while the experience is still fresh in their minds. Person-to-person interviews could help identify other factors that influence clinician-patient interactions. For instance, are patients more open with doctors they’ve known for years?
The possibility suggests that patients may not be the only ones to blame, says Fagerlin. “How providers are communicating in certain situations may cause patients to be hesitant to open up,” she says. “This raises the question, is there a way to train clinicians to help their patients feel more comfortable?” After all, a healthy conversation is a two-way street.
Importance: Patient failure to disclose medically relevant information to clinicians can undermine patient care or even lead to patient harm.
Objective: To examine the frequency of patients failing to disclose to their clinicians information that is relevant to their care and their reasons for doing so.
Design, Setting, and Participants: Two national nonprobability samples were recruited to participate in an online survey, one using Amazon’s Mechanical Turk (MTurk) from March 16 to 30, 2015 (2096 respondents), followed by one using Survey Sampling International (SSI) from November 6 to 17, 2015 (3011 respondents). Data analysis was conducted from September 28 to October 8, 2018. After dropping respondents meeting the exclusion criteria, the final sample sizes were 2011 (MTurk) and 2499 (SSI).
Main Outcomes and Measures: The primary outcome measures were self-reported nondisclosure of 7 types of information to their clinician (eg, did not understand instructions, medication use) and reasons for nondisclosure (eg, embarrassment, not wanting to be judged).
Results: There was a total of 4510 overall respondents. Of 2096 respondents, 2013 completed the MTurk survey (96.0% completion rate) and 2011 were included in the analysis. Of 3011 respondents, 2685 completed the SSI survey (89.2% completion rate) and 2499 were included in the analysis. The mean (SD) age of the participants was 36 (12.4) years for MTurk and 61 (7.59) years for SSI. Both samples were predominantly white (MTurk: 1696 [84.3%]; SSI: 1968 [78.8%]). A total of 1630 MTurk participants (81.1%) and 1535 SSI participants (61.4%) avoided disclosing at least 1 type of information. Disagreeing with the clinician’s recommendation (MTurk: 918 of 2010 respondents [45.7%]; SSI: 785 of 2497 respondents [31.4%]) and not understanding the clinician’s instructions (MTurk: 638 of 2009 respondents [31.8%]; SSI: 607 of 2497 respondents [24.3%]) were the most common occurrences. The most commonly reported reasons for nondisclosure included not wanting to be judged or lectured (MTurk: 81.8% [95% CI, 79.8%-83.9%]; SSI: 64.1% [95% CI, 61.5%-66.7%]), not wanting to hear how harmful the behavior is (MTurk: 75.7% [95% CI, 73.5%-78.0%]; SSI: 61.1% [95% CI, 58.5%-63.8%]), and being embarrassed (MTurk: 60.9% [95% CI, 58.9%-62.9%]; SSI: 49.9% [95% CI, 47.8%-52.1%]). In both samples, participants who were women (MTurk: odds ratio [OR], 1.88 [95% CI, 1.49-2.37]; SSI: OR, 1.38 [95% CI, 1.17-1.64]), younger (MTurk: OR, 0.98 [95% CI, 0.97-0.99]; SSI: OR, 0.98 [95% CI, 0.97-0.99]), and with worse self-rated health (MTurk: OR, 0.87 [95% CI, 0.76-0.99]; SSI: OR, 0.80 [95% CI, 0.72-0.88]) were more likely to report withholding information.
Conclusions and Relevance: Many respondents in these surveys intentionally withhold important information from their clinicians and were most likely to do so when they disagreed with or misunderstood their clinician’s instructions. A better understanding of how to increase patients’ comfort with reporting this information may improve the clinician-patient relationship and patient care.
Andrea Gurmankin Levy, Aaron M Scherer, Brian J Zikmund-Fisher, Knoll Larkin, Geoffrey D Barnes, Angela Fagerlin