Characteristics of Patients with Advanced Cancer Preferring Not to Know Prognosis: Presenter(s): Inge Henselmans, Amsterdam University Medical Centers, Netherlands. (April 2023)

• Record Type: Journal Article
• Authors: van der Velden, N.C.A.; van Laarhoven, H.W.M.; Burgers, J.A.; Hendriks, L.E.L.; De Vos, F.Y.F.L.; Dingemans, A.M.C.; van Haarst, J.M.W.; Dits, J.; Smets, E.M.A.
• Is Part Of: Patient education and counseling. Volume 109(2023)Supplement
• Page Start: 12
• Publication Date: 2023-04
• Subjects: Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2022.10.037
• Languages: English
• ISSNs: 0738-3991

Abstract

Abstract : Background: For some patients with advanced cancer not knowing prognosis is essential. Yet, in an era of informed decision-making, the potential protective function of unawareness is easily overlooked. We investigated the 1) proportion of advanced cancer patients preferring not to know prognosis; 2) reasons underlying patients' prognostic information preference; 3) characteristics associated with patients' preference not to know prognosis; 4) concordance between physicians' perceived and patients' actual prognostic information preference. Methods: Cross-sectional study using structured surveys for patients, physicians and caregivers. Medical oncologists and lung cancer specialists included patients from seven Dutch hospitals (n=524) with metastatic/inoperable cancer and an expected median overall survival of ≤12 months. For this analysis, we used patient and physician data only. Findings: Twenty-five percent of patients preferred not knowing a life expectancy estimate; 28-31% preferred not knowing the 5-, 2- or 1-year survival rate. Patients preferring not to know prognosis (1-year survival) agreed significantly more strongly with reasons for wanting limited information (optimism, avoidance, comprehension) and less strongly with reasons for wanting complete information (sense of control, autonomy, anxiety, expectations of others) compared to patients preferring to know. Females (OR=1.67, 95%CI [1.12, 2.48], p<.05), patients receiving a further line of systemic treatment (OR=2.66, 95%CI [1.35, 5.26], p<.01) and patients with strong fighting spirit (mini-MAC subscale, OR=1.22, 95%CI [1.13, 1.33], p<.001) were more likely to prefer not knowing prognosis. Among patients preferring not to know, 50% had a physician accurately reporting their information preference. Concordance between physicians' perceived and patients' actual prognostic information preference was poor (K=0.066). Discussion: Our results highlight the relevance of explicitly exploring patients' prognostic information preferences and the underlying reasons, ensuring tailored communication. Future research should study if and how patients' prognostic information preferences evolve over the course of the disease, and assess the impact of receiving unwanted prognostic information on patients.