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

  • Matthew T Hudnall 1,
  • Anuj S Desai 1,
  • Kyle P Tsai 1,
  • Adam B Weiner 1,
  • Amanda X Vo 1,
  • Oliver S Ko 1,
  • Stephen Jan 2,
  • Edward M Schaeffer 1,
  • Shilajit D Kundu 1
1 Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA 2 University of Maryland School of Medicine, Baltimore, Maryland, USA

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.