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The debate over describing low-risk lesions in a way that avoids the word “cancer” has been rolling on for a while, ever since the National Cancer Institute proposed the idea in 2013.

Now, a study suggests that the name given to these low-risk lesions has a substantial impact on the way in which patients view their clinical situation, and the authors argue that using the word “cancer” leads to overtreatment.

The study was based on a survey of 1000 healthy individuals who were questioned about their reactions to a hypothetical finding of a low-risk lesion in the thyroid gland.

As with low-risk lesions found, for example, in the prostate gland, these may never develop into invasive cancer and can be managed with active surveillance instead of radical treatment in the first instance.

The results of this survey show that participants were almost three times more likely to choose an invasive treatment that worsened their prognosis if the lesion was labeled a cancer than if it was called a nodule or tumor.

The study was published online on March 21 in JAMA Oncology.

“The cancer label profoundly influences the choices that patients with low-risk malignant neoplasms make,” write the authors, led by David R. Urbach, MD, Department of Surgery and the Institute of Health Policy, University of Toronto, Women’s College Hospital, Canada.

“It can induce paradoxical decision making that leads to overtreatment,” they warn.

However, in a related editorial, Elise C. Kohn, MD, and Shakun Malik, MD, Cancer Therapy Evaluation Program, National Cancer Institute, Bethesda, Maryland, raise a few questions about the study and about the idea of not using the word “cancer.”

“What is in a name?” they ask, adding: “Are all small lesions containing abnormal cells the same?

“This leads to the question, is it ethical to generalize the argument that any small, malignant lesion that could be cured more than 95% of the time could be minimized as a noncancer?”

Kohn and Malik argue that the “application of a benign descriptor can create or propagate a treatment bias just as much as the use of a more correct, more worrisome term, such as cancer.”

They also suggest that the responses of the generally young and healthy individuals who participated in this study may not correspond to responses of “older patients who may have nodules in their lung, breast, pancreas, or other organ.”

Calling for the “careful design of experiments,” Kohn and Malik say that attention “must be given to the breadth and depth of conclusions and attributions.”

It is “not always an easy task” for busy clinicians to convey risks and recommendations and allow informed decision making when explaining the diagnosis of low-risk lesions to patients, the editorialists acknowledge. But they emphasize that “patient care is an exercise of shared decision making that requires clear communication.”

Study Details

In their article, the researchers highlight thyroid cancer as a prime example in which unfounded fear may drive patient choices.

They note that although the incidence of the disease has increased in the United States faster than that for any other malignant neoplasm, that increase is almost entirely driven by low-risk lesions.

Their study set out to determine whether the label given to a thyroid neoplasm would affect patient decision making. They surveyed a sample of US residents aged 18 to 78 years.

The participants were presented with hypothetical vignettes involving low-risk thyroid malignant neoplasms that varied in terms three attributes:

  • Disease label: Cancer, tumor, nodule

  • Treatment offered: Active surveillance, surgery

  • Risk for progression or recurrence: 0%, 1%, 2%, 5%

In all vignettes, the individuals were told their probability of survival was more than 99%.

For the test, the participants were presented with pairs of vignettes and were asked to indicate which one they preferred. The process was repeated for eight rounds. On each round, the vignettes varied in their combination of attributes and levels.

The researchers excluded individuals who did not complete the survey or who took longer than 2 minutes, which left 1086 individuals who responded to 8544 choice sets.

The median age of the participants was 35 years, and 56.7% were women. The majority (67.5%) reported having good or very good overall health, and most (70.9%) had completed at least one post–secondary school degree.

Only 7.3% of the individuals had a history of any cancer or thyroid surgery.

The researchers found, unsurprisingly, that most individuals preferred a 0% risk for progression or recurrence. The most avoided attribute was a 5% risk for progression or recurrence.

Active surveillance was preferred over surgery, and the labels “nodule” and “tumor” were preferred over “cancer.”

Participants aged 50 years or older were more likely to prefer “nodule” and to avoid the word “cancer” than those aged 18 to 30 years, and they were more likely to avoid surgery.

Older participants in good health also showed a greater preference for active surveillance.

The team showed that the preference for “nodule” over “cancer” was comparable to the preference for a 1% risk for progression or recurrence over a 5% risk.

The participants’ preference for “tumor” over “cancer” was less strong; it compared to the preference for a 2% risk for progression or recurrence over a 5% risk.

Surgery became more acceptable if the disease was labeled “nodule” rather than “cancer”; the preference for active surveillance was greater than that for “tumor” over “cancer.”

The researchers examined in a subset of 516 participants the likelihood of their choosing a radical, invasive treatment that would lead to a poorer prognosis.

This so-called paradoxical choice was made by 27.3% of individuals when the disease was labeled “cancer,” but it was made by only 9.4% if the label was either “nodule” or “tumor” (risk ratio, 2.9).

“This paradoxical decision making suggests that removing the disease, even to the detriment of prognosis, is a strong instinct when we label the disease as cancer,” the team writes.

The research was supported by the Toronto General Research Institute with funds from the Canadian Institutes of Health Research. The authors have disclosed no relevant financial relationships.

JAMA Oncol. Published online March 21, 2019. Abstract, Editorial

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