Cancer Disease Label Affects Patient Decision-Making

Whether a disease is labeled “cancer,” “tumor,” or “nodule” may affect patient decision-making, according to a discrete-choice experiment.

Use of the word cancer in a disease label of a low-risk malignant neoplasm was “profoundly” influential on more than 1,000 mostly young, healthy survey respondents, led to “paradoxical decision-making,” and could subsequently lead to overtreatment, reported Peter R. Dixon, MD, of the University of Toronto and colleagues.

In the survey, respondents were willing to accept a four-percentage-point increased risk for progression or recurrence to avoid use of the term “cancer” in favor of “nodule,” according to the study online in JAMA Oncology. There was less of a difference in preference for the label of “tumor” compared with “cancer.”

“Preexisting perceptions about cancer from personal or others’ experiences with clinically aggressive malignant neoplasms may amplify responses to cancer risk,” Dixon and colleagues wrote. “Participants preferred surgical treatment even when it resulted in poorer prognosis more frequently for a cancer diagnosis than for any other disease label.”

However, when treatment was looked at independently of disease label, active surveillance was the preferred treatment.

The experiment used an online survey on 1,068 U.S. residents with a median age of 35. The majority of respondents (67.5%) reported having good or very good health.

In the survey, participants indicated preferences between a series of two hypothetical vignettes that described the discovery of a small thyroid lesion. In the vignettes, the disease was labeled as either a cancer, tumor, or nodule; possible treatment was either active surveillance or surgery, and risk for progression or recurrence varied from 0% to 5%.

For example, respondents were asked to choose between the following:

• A biopsy report showing a thyroid nodule, treatment with surgery, and a 5% risk for progression or recurrence

• A biopsy report showing a papillary thyroid cancer, treatment with active surveillance, and a 1% risk of progression or recurrence

Respondents preferred situations where the disease was labeled as a nodule or tumor compared with the label of cancer. The magnitude of preference for use of the word nodule compared with cancer was comparable to respondents’ preference for a 1% risk of progression or recurrence compared with a 5% risk.

Surgery was considered an acceptable treatment — compared with active surveillance — if it meant the disease could be labeled as a nodule instead of as a cancer, the survey found.

“Although our study focused on thyroid cancer, similar findings may be present with other clinically indolent malignant neoplasms such as some forms of breast cancer, melanoma, lung cancer, and prostate cancer,” Dixon and colleagues wrote.

Among the strategies they suggested to mitigate overtreatment were “raising threshold for biopsy of low-risk nodules” and omission of the word cancer from the description of low-risk lesions.

In an accompanying commentary, Elise C. Kohn, MD, and Shakun Malik, MD, both of the National Cancer Institute, questioned use of the word nodule in favor of the word cancer, pointing out that patients rely on their physicians to provide the necessary information to make good decisions, and that “a truthful discussion is necessary to generate and maintain trust and the physician-patient relationship.”

“The physician must present the medical facts accurately to the patient in a fashion that is understandable for that individual, enabling the patient to exercise self-determination and make an informed choice,” according to the commentary. “The physician has an ethical obligation to help the patient make choices from among the therapeutic alternatives consistent with good medical practice.”

Education of medical professionals and the lay public on how to characterize cancer diagnoses will be key to this process, Kohn and Malik continued.

They also questioned the generalizability of the findings, which were drawn from a population of relatively young and healthy patients: “Generalizing findings from healthy participants regarding a premalignant or minimally invasive lesion that is relatively easy to find and address to patient perceptions and decisions related to any low-risk malignant neoplasm requires a clear and validated definition of low-risk malignant neoplasms as well as site-specific considerations,” Kohn and Malik said. “Not all in-situ carcinomas recede or fail to progress.”