Core values of patients with advanced cancer considering participation in an early-phase clinical trial: a qualitative study

Abstract

Objective: This article identifies the core values that play a role in patients’ decision-making process about participation in early-phase clinical cancer trials. Methods: Face-to-face, semi-structured serial interviews (n = 22) were performed with thirteen patients with advanced cancer recruited in two Dutch specialized cancer centers. In a cyclic qualitative analysis process, open and axial coding of the interviews finally led to an overview of the values that are woven into patients’ common language about cancer and clinical trials. Results: Six core values were described, namely, acceptance creates room for reconsideration of values, reconciliation with one’s fate, hope, autonomy, body preservation, and altruism. Previously found values in advanced cancer, such as acceptance, hope, autonomy, and altruism, were further qualified. Reconciliation with one’s fate and body preservation were highlighted as new insights for early-phase clinical cancer trial literature. Conclusions: This article furthers the understanding of core values that play a role in the lives and decision-making of patients with advanced cancer who explore participation in early-phase clinical cancer trials. These values do not necessarily have to be compatible with one another, making tragic choices necessary. Understanding the role of core values can contribute to professional sensitivity regarding what motivates patients’ emotions, thoughts, and decisions and help patients reflect on and give words to their values and preferences. It supports mutual understanding and dialog from which patients can make decisions according to their perspectives on a good life for themselves and their fellows in the context of participation in an early-phase clinical cancer trial.