Patients Often Withhold Information From Providers

Ricki Lewis, PhD

November 30, 2018

Patients often do not disclose medically relevant information to their healthcare providers, according to results of a study published online November 30 in JAMA Network Open.

Withholding of information can interfere with the delivery of adequate care and perhaps even do harm. The reasons for not reporting all relevant facts during the taking of a medical history have not been well studied. Andrea Gurmankin Levy, PhD, MBe, Middlesex Community College, Connecticut, and colleagues assessed the frequency with which patients failed to disclose to their clinicians information relevant to their care, as well as the patients' reasons for doing so, through an analysis of responses to an online survey.

Data were collected from two survey groups. Between March 16 and March 30, 2015, 2096 US adults responded to Amazon's Mechanical Turk (MTurk) survey. Between November 6 and November 17, 2015, 3011 individuals responded to the Survey Sampling International (SSI) survey. After excluding respondents who did not meet age criteria (50-100 years) or who did not want their data included, 4510 remained.

The primary outcome measures were self-reported nondisclosure of seven types of information to the clinician and the reasons for wihholding this information. The researchers defined healthcare providers as "any medical caregiver, such as a doctor, physician's assistant, or nurse."

Well more than half of participants reported withholding information: 1630 from the MTurk cohort (81.1%), and 1535 from the SSI cohort (61.4%).

The most common situations in which information was withheld were not agreeing with the clinician's recommendation (MTurk, 45.7%; SSI, 31.4%) and not understanding the clinician's instructions (MTurk, 31.8%; SSI, 24.3%).

The five reasons most commonly indicated for participants not disclosing information were not wanting to be judged or lectured (MTurk, 81.8%; SSI, 64.1%), not wanting to hear how harmful their behavior is (MTurk, 75.7%; SSI, 61.1%), embarrassment (MTurk, 60.9%; SSI, 49.9%), not wanting the clinician to think they were difficult patients (MTurk, 50.8%; SSI, 38.1%), and not wanting to take up more of the clinician's time (MTurk, 45.2%; SSI, 35.9%).

"If patients are withholding information from clinicians as frequently as this research suggests, then clinicians are routinely not receiving the information that they need to provide high quality care to patients, especially sicker patients," the researchers conclude. They note that sicker patients were more likely to withhold information.

In an invited commentary, Arthur S. Elstein, PhD, from the Department of Medical Education, University of Illinois College of Medicine, Chicago, delved more deeply into the reasons for not fully disclosing information to a healthcare provider.

In his commentary, Elstein notes that "[p]erhaps the oldest question in the history of health care is, What brings you (the patient) to see me (the healer) today?' "

Elstein points out that the patient's account of his or her illness "is only 1 possible account, and not necessarily the true state of affairs.... [T]he upshot is that, on the one hand, not all experiences can be retrieved on demand and, on the other, patients are sometimes reluctant to tell all they know. Both are threats to the validity of the clinical interview."

Although the study authors found that race and education were not significant factors in whether or not patients failed to disclose information, Elstein indicates that both online surveys overrepresented college-educated white individuals and underrepresented other groups. The method of sampling selected individuals who like to take Internet surveys, Elstein writes.

Elstein also points out that nonwhite patients might be more concerned about disapproval and disrespect from the clinician, and he calls for further investigation of this "socioeconomic bias."

The study may itself suggest an opportunity to correct the problem, Elstein says. "[T]he authors have implicitly suggested a remedy worth trying: to shift questions that are the most difficult to answer candidly in a face-to-face clinical interview to an impersonal survey instrument. The success of this study in eliciting data on the prevalence of nondisclosure suggests that this technology might be useful in solving the problem. A trial of this strategy would almost surely be less expensive than a sustained effort to change the clinical culture and the interviewing style of a generation of clinicians."

Limitations of the study include self-reporting of memories online and the fact that if participants withheld information from healthcare providers, they might also do so on a survey. In addition, the survey did not capture the extent of nondisclosure — for example, one instance of withholding information would have counted as much as perpetual nondisclosure of drug use. In addition, the survey presented possible reasons for nondisclosure, from which the participants then chose, rather than having the participants volunteer their own reasons for withholding information.

The study was funded through faculty research funds provided by the Division of General Medicine of the University of Michigan. The researchers and Dr Elstein have disclosed no relevant financial relationships.

JAMA Network Open. Published online November 30, 2018. Full text, Commentary

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