A disease by any other name: Effects of cancer grading nomenclature on perception of prostate cancer risk

For patients with cancer, language about their disease can hold enormous meaning. Receiving a diagnosis of cancer evokes complex emotional and psychosocial responses that reverberate through both patients and their support sphere. These experiences extend to patients who are diagnosed with ’lowrisk’ prostate cancer— those who have low disease stage, prostatespecific antigen levels, and histologic grade— for whom the absolute risks of disease progression or mortality are very low, even in the absence of treatment. 4 Yet, for patients with ostensibly indolent cancers, past personal experiences with the disease and the quality of clinical information received about the diagnosis can obscure their perception of risk. Beyond an emotional burden, inflated assessments of risk can also lead to harms, such as receiving unnecessarily invasive treatments and their associated effects on healthrelated quality of life. Thus, establishing effective communication that is attuned to a patient’s informational needs is a hallmark of patientcentered care and is tied to decisional quality and outcome. Delivering clinical information that is both scientifically accurate and appropriately framed to convey its intended meaning is a foundation for engaging in highquality decision making. These needs are prominent for patients with lowrisk prostate cancer who are candidates for active surveillance rather than immediate treatment as a means to avoid potential treatmentrelated morbidity. Supported by randomized trials and observational evidence, active surveillance is now widely recognized as the standard of care for most patients with lowrisk prostate cancer. In response, rates of utilization have increased significantly, and active surveillance is now the dominant initial management strategy for patients with lowrisk prostate cancer. Despite increases, utilization remains to be fully realized, and high rates of overtreatment persist in some regions. Therefore, in the coming years, priorities for lowrisk prostate cancer will not only focus on the longitudinal needs of patients on active surveillance but also should increasingly emphasize interventions that promote greater initial participation. From this perspective, the elegant study by Hudnall and colleagues in this issue of Cancer explores how cancer grading nomenclature affects management preference and anxiety for patients who are facing a new diagnosis of prostate cancer. By using an innovative experimental method, the investigators posed a hypothetical diagnoses of lowgrade prostate cancer to online volunteers and assessed selfreported preferences for active surveillance versus treatment and assessed diagnosisrelated anxiety. Participants were randomly assigned to 1 of 3 synonymous terminologies that described the lowest grade histologic pattern of prostate cancer: either Gleason 6 out of 10, grade group 1 out of 5, or indolent lesion of epithelial origin (IDLE). The experimental groups were thoughtfully selected and sought to elicit differences in perception between conventional Gleason and alternative reporting practices. The Gleason grading system has served as the standard system for describing prostate cancer grade since the 1960s, but changes to reporting practices over time have led to reporting the lowest possible cancer grade as pattern 3 + 3 = 6 (a sum of 6 of a possible 10). Therefore, communicating Gleason 6 out of 10 to a patient newly diagnosed with prostate cancer may betray the true lowgrade nature of their disease and promote greater inclination for immediate treatment rather than active surveillance because of the perception of more aggressive disease. To communicate the spectrum of disease prognosis more effectively, alternative strategies have been proposed and are now widely accepted. In particular, the grade group system condenses the spectrum of reported grades to a scale from 1 to 5 of increasing disorganized glandular architecture, wherein Gleason sums ≤6 are summarized as grade group 1. Finally, a report of IDLE reflects enthusiasm for this term to convey that it does not include cancer based on the very low likelihood of progression or metastasis.