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

Abstract

BACKGROUND 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. OBJECTIVE Determine the impact of GG1 disease terminology on individual’s perceptions and decision-making. DESIGN, SETTING, AND PARTICIPANTS 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%). OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS 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. RESULTS AND LIMITATIONS 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. CONCLUSIONS “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.