The Role of Disease Label in Patient Perceptions and Treatment Decisions in the Setting of Low-Risk Malignant Neoplasms

Abstract

Importance: The cancer disease label may lead to overtreatment of low-risk malignant neoplasms owing to a patient's emotional response or misunderstanding of prognosis. Decision making should be driven by risks and benefits of treatment and prognosis rather than disease label.

Objective: To determine whether disease label plays a role in patient decision making in the setting of low-risk malignant neoplasms and to determine how the magnitude of the disease-label effect compares with preferences for treatment and prognosis.

Design, setting, and participants: A discrete choice experiment conducted using an online survey of 1314 US residents in which participants indicated their preferences between a series of 2 hypothetical vignettes describing the incidental discovery of a small thyroid lesion. Vignettes varied on 3 attributes: disease label (cancer, tumor, or nodule); treatment (active surveillance or hemithyroidectomy); and risk of progression or recurrence (0%, 1%, 2%, or 5%). The independent associations of each attribute with likelihood of vignette selection was estimated with a Bayesian mixed logit model.

Main outcomes and measures: The preference weight of the cancer disease label was compared with preference weights for other attributes.

Results: In 1068 predominantly healthy respondents (605 women and 463 men) with a median age of 35 years (range, 18-78 years), the cancer disease label played a considerable role in respondent decision making independent of treatment offered and risk of progression or recurrence. Participants accepted a 4-percentage-point increase in risk of progression or recurrence (from 1% to 5%) to avoid labeling their disease as cancer in favor of nodule (marginal rate of substitution [MRS], 1.0; 95% credible interval [CrI], 0.9-1.1). Preference for the nodule label instead of cancer was similar in magnitude to the preference for active surveillance over surgery (MRS, 1.0; 95% CrI, 0.9-1.1).

Conclusions and relevance: Disease label plays a role in patient preference independent of treatment risks or prognosis. Raising the threshold for biopsy or removing the word cancer from the disease label may mitigate patient preference for aggressive treatment of low-risk lesions. Health care professionals should emphasize treatment risks and benefits and natural disease history when supporting treatment decisions for potentially innocuous epithelial malignant neoplasms.

Figure 1.. Visual Aids Used in Discrete Choice Experiment

Participants were introduced to the hypothetical scenario (A) and treatment risks (B). These materials could be reviewed at any time. Each respondent indicated preference for 8 choice sets, an example of which is shown in panel C.

Figure 2.. Population Average Preference Weights for Each Attribute Level

Positive values indicate preference for the labeled level, and negative values indicate avoidance. The circles represent the posterior means and the error bars show 95% credible intervals.

Figure 3.. Violin Plots for Marginal Rates of Substitution

Marginal rates of substitution (MRS) are presented for nodule vs cancer (A) and tumor vs cancer (B) relative to preferences for progression risk and management options. An MRS of 1.0 indicates that changing the label to cancer made respondents equally likely to avoid the scenario as increasing the risk of progression to 5% or changing the management to surgery, and an MRS of greater than 1.0 means that the label was more influential than the indicated comparison. The posterior median is indicated by the central horizontal black line, the 95% credible intervals are indicated by the horizontal black lines above and below the posterior median, and the widths of the curved shapes represent probability density.