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Thyroid nodule or cancer? Disease label impacts patient perceptions, treatment preferences
Use of the word “cancer” to describe low-risk malignant neoplasms influenced patient treatment preference regardless of risks or prognosis, according to study results published in JAMA Oncology.
“The word ‘cancer’ is often associated with an aggressive and lethal disease. Innovations in screening and diagnostic tests detect some cancers that — even if left untreated — pose very low risk for any symptoms, progression or mortality,” Peter R. Dixon, MD, resident in the otolaryngology department at Toronto University, told HemOnc Today. “Still, many of these low-risk cancers are treated aggressively, and those treatments can have harmful consequences and side effects. We were interested in determining how influential the word ‘cancer’ is in decisions made by patients about low-risk malignant neoplasms relative to other labels for the same disease.”
In the discrete choice experiment, Dixon and colleagues administered an online survey to 1,314 U.S. residents, eliciting their preferences in a series of two hypothetical scenarios involving the incidental discovery of a small thyroid lesion.
The scenarios differed in three areas: disease label (cancer, tumor or nodule), treatment (active surveillance or hemithyroidectomy), and risk for disease progression or recurrence (0%, 1%, 2% or 5%). Researchers used a Bayesian mixed logit model to estimate the independent associations of each attribute, and compared the preference rate of the cancer disease label with the preference weights for other attributes.
Respondents to the survey consisted of 1,068 largely healthy individuals (median age, 35 years; range, 18-78 years; 605 women). Most respondents (67%) reported good or very good overall health, and 70.9% had attained a college or graduate degree. About 7% of patients reported a personal history of any cancer or thyroid surgery.
The researchers found that the cancer label had a substantial influence on respondent decision-making, independent of treatment regimen offered and risk for progression or recurrence. Participants were willing to accept a 4-percentage point increase in progression or recurrence risk (from 1% to 5%) to have their disease labeled nodule as opposed to cancer (marginal rate of substitution [MRS], 1; 95% credible interval [CrI], 0.9-1.1). Results also showed a slightly smaller preference for the tumor label over cancer (MRS, 1.2; 95% CrI, 1-1.4).
The preference for active surveillance over surgery was comparable to the preference for the nodule label over cancer (MRS, 1; 95% CrI, 0.9-1.1).
Researchers acknowledged that online recruitment for such studies may attract more technologically inclined individuals, a bias demonstrated by the young, highly educated cohort. They also noted that older respondents appeared more affected by disease label and treatment in relation to risk for progression; therefore, their sample may underestimate the relative influence of the word “cancer” in the U.S. population.
A benign term such as nodule can generate a treatment bias just as much as a more accurate yet worrisome term, such as cancer, according to a related editorial written by Elise C. Kohn, MD, head of gynecologic therapeutics, and Shakun Malik, MD, head of thoracic cancer therapeutics at the Cancer Therapy Evaluation Program at the NCI.
The editorial authors also raised the issue of generalization.
“The response of young, healthy study participants does not approximate that of older patients who may have nodules in their lung, breast, pancreas or other organs,” Kohn and Malik wrote. “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 requires a clear and validated definition of low-risk malignant neoplasms as well as site specific considerations.”
Dixon said his findings suggest a need to reevaluate use of the word “cancer” in certain low-risk diagnoses.
“The language used to label conditions can have a profound influence on how patients perceive their condition and make decisions about their care,” Dixon told HemOnc Today. “Both patients and physicians need to be aware of the potential for the word ‘cancer’ to influence perceptions and decision-making. This point is worthy of raising in counseling discussions with some patients. The important characteristics of a condition should be emphasized, including prognosis, treatments available, their relative effectiveness, and their potential consequences and side effects.” – by Jennifer Byrne
For more information: Peter R. Dixon, MD, can be reached at University of Toronto, 190 Elizabeth St., Rm 3S-438, R. Fraser Elliott Building, Toronto, ON M5G 2N2; email: peter.dixon@mail.utoronto.ca.
Disclosures: The study authors and the editorial authors report no relevant disclosures.