The influence of the "cancer" label on perceptions and management decisions for low-grade prostate cancer.

Grade Group 1 prostate cancer (GG1) should be managed with active surveillance (AS). Global uptake of AS remains disappointingly slow and heterogeneous. Removal of cancer labels has been proposed to reduce GG1 overtreatment.

Determine the impact of GG1 disease terminology on individual's perceptions and decision-making.

Discrete choice experiments (DCE) were conducted on 3 cohorts: healthy men, canonical partners (partners), and patients with GG1 (patients). Participants reported preferences in a series of vignettes with two scenarios each, permuting KOL-endorsed descriptors: biopsy (adenocarcinoma/acinar neoplasm/PAN-LMP/PAN-UMP), disease (cancer/neoplasm/tumor/growth), management decision (treatment/AS), and recurrence risk (6%/3%/1%/<1%).

Influence on scenario selection were estimated by conditional logit models and marginal rates of substitution (MRS). Two additional validation vignettes with scenarios portraying identical descriptors except the management options were embedded into the DCE.

Across cohorts (194 healthy men, 159 partners, and 159 patients), non-cancer labels PAN-LMP or PAN-UMP and neoplasm, tumor or growth were favored over adenocarcinoma and cancer (p < 0.01), respectively. Switching adenocarcinoma and cancer labels to PAN-LMP and growth, respectively, increased AS choice by up to 17%: healthy men (15% [95CI 10-20%], from 76% to 91%, p < 0.001), partners (17% [95CI 12-24%], from 65% to 82%, p < 0.001) and patients (7% [95CI 4-12%], from 75% to 82%, p = 0.063). Main limitation is the theoretical nature of questions perhaps leading to less realistic choices.

"Cancer" labels negatively impact perceptions and decision-making regarding GG1. Relabeling (i.e., avoiding word "cancer") increases proclivity for AS and would likely improve public health.

Journal of the National Cancer Institute. 2023 Jun 07 [Epub ahead of print]

Alejandro Berlin, Matthew Ramotar, Anna T Santiago, Zhihui Liu, Joyce Li, Howard Wolinsky, Christopher J D Wallis, Melvin L K Chua, Gladell P Paner, Theodorus van der Kwast, Matthew R Cooperberg, Andrew J Vickers, David R Urbach, Scott E Eggener

Department of Radiation Oncology, University of Toronto; Radiation Medicine Program, Princess Margaret Cancer Centre; TECHNA Institute, University Health Network. Toronto, ON, Canada., Department of Biostatistics, Princess Margaret Cancer Centre; Dalla Lana School of Public Health, University of Toronto. Toronto, ON, Canada., The University of Western Ontario, London, ON, Canada., AnCan Active Surveillance Virtual Support Group; The Active Surveillor Newsletter. Chicago, IL, USA., Division of Urology, Department of Surgery, University of Toronto, Mount Sinai Hospital, and University Hospital Network. Toronto, ON, Canada., Divisions of Radiation Oncology and Medical Sciences, National Cancer Centre Singapore; Oncology Academic Programme, Duke-NUS Medical School. Singapore., Departments of Pathology and Surgery, University of Chicago. Chicago, IL, USA., Laboratory Medicine Program, University Health Network. Toronto, ON, Canada., Departments of Urology and Epidemiology & Biostatistics, University of California San Francisco Comprehensive Cancer Center. San Francisco, CA, USA., Department of Epidemiology & Biostatistics, Memorial Sloan Kettering Cancer Center. New York, NY, USA., Institute for Clinical Evaluative Sciences (ICES); Department of Surgery, University of Toronto; Perioperative Services, Women's College Hospital and Research Institute. Toronto, ON, Canada., Section of Urology, Department of Surgery, The University of Chicago Comprehensive Cancer Center. Chicago, IL, USA.