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Original Investigation
March 21, 2019

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

Author Affiliations
  • 1Department of Otolaryngology-Head & Neck Surgery, University of Toronto, Toronto, Ontario, Canada
  • 2Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
  • 3Department of Surgery, University Health Network, Women’s College Hospital, and University of Toronto, Toronto, Ontario, Canada
  • 4Department of Laboratory Medicine and Pathobiology, University Health Network and University of Toronto, Toronto, Ontario, Canada
  • 5Department of Medicine, Mount Sinai Hospital and University of Toronto, Toronto, Ontario, Canada
  • 6Department of Medicine, University Health Network and University of Toronto, Toronto, Ontario, Canada
JAMA Oncol. Published online March 21, 2019. doi:10.1001/jamaoncol.2019.0054
Key Points

Question  What role does disease label play in patients’ treatment decision making in the setting of low-risk epithelial malignant neoplasms such as papillary thyroid cancer?

Findings  The disease labels cancer, nodule, and tumor played a considerable role in patient decision making, with participants willing to accept a 4-percentage-point increased risk of progression or recurrence (from 1% to 5%) to avoid their disease being labeled as cancer in favor of nodule. The strength of the preference for the nodule label instead of cancer was similar to the preference for active surveillance instead of surgery.

Meaning  Omitting the word cancer from the disease label of low-risk epithelial malignant neoplasms may reduce overtreatment.

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.

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