It's all in the name: Does nomenclature for indolent prostate cancer impact management and anxiety?

Background Despite consensus guidelines, many men with low‐grade prostate cancer are not managed with active surveillance. Patient perception of the nomenclature used to describe low‐grade prostate cancers may partly explain this discrepancy. Methods A randomized online survey was administered to men without a history of prostate cancer, presenting a hypothetical clinical scenario in which they are given a new diagnosis of low‐grade prostate cancer. The authors determined whether diagnosis nomenclature was associated with management preference and diagnosis‐related anxiety using ratings given on a scale from 1 to 100, adjusting for participant characteristics through multivariable linear regression. Results The survey was completed by 718 men. Compared with Gleason 6 out of 10 prostate cancer, the term grade group 1 out of 5 prostate cancer was associated with lower preference for immediate treatment versus active surveillance (β = −9.3; 95% CI, −14.4, −4.2; P < .001), lower diagnosis‐related anxiety (β = −8.3; 95% CI, −12.8, −3.8; P < .001), and lower perceived disease severity (β = −12.3; 95% CI, −16.5, −8.1; P < .001) at the time of initial diagnosis. Differences decreased as participants received more disease‐specific education. Indolent lesion of epithelial origin, a suggested alternative term for indolent tumors, was not associated with differences in anxiety or preference for active surveillance. Conclusions Within a hypothetical clinical scenario, nomenclature for low‐grade prostate cancer affects initial perception of the disease and may alter subsequent decision making, including preference for active surveillance. Disease‐specific education reduces the differential impact of nomenclature use, reaffirming the importance of comprehensive counseling and clear communication between the clinician and patient. Online survey participants are randomized to 1 of 3 hypothetical prostate cancer diagnosis scenarios, in which a different term is used in each scenario to describe the disease. They associated the term grade group 1 out of 5 prostate cancer with greater preference for active surveillance, the recommended strategy for managing low‐grade prostate cancers, and less diagnosis‐related anxiety compared with Gleason 6 out of 10 prostate cancer.