How patients with advanced cancer conceptualize prognosis: A phenomenological qualitative inquiry

Abstract

Background: Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define “prognosis.” Aim: The present study examined how patients with advanced cancer conceptualize their “prognosis.” It also explored how patients assigned value to prognostic information and the impact of prognosis on life perspectives. Design: A phenomenological approach was used to analyze semi-structured interviews with individuals with advanced cancer to examine how patients define prognosis. Setting/participants: English and Spanish-speaking patients with advanced cancer ( N = 29) were recruited from ambulatory clinics at a comprehensive cancer center in New York City. Results: To conceptualize prognosis, patients focused on concrete medical data, anticipated survival and quality of life, impact on meaningful life events, uncertainty, and physician affect. They discussed the importance of maintaining normalcy despite prognosis, knowledge as a form of coping, information reframing, and altered decision-making as means of coping with prognostic information. Conclusions: Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.