Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

• Published in: BMC cancer Vol. 22; no. 1; pp. 1 - 941
• Main Authors: van der Velden, Naomi C. A, van Laarhoven, Hanneke W. M, Burgers, Sjaak A, Hendriks, Lizza E. L, de Vos, Filip Y. F. L, Dingemans, Anne-Marie C, Jansen, Joost, van Haarst, Jan-Maarten W, Dits, Joyce, Smets, Ellen MA, Henselmans, Inge
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 01.09.2022; BioMed Central; BMC
• Subjects: Anxiety; Behavior; Cancer; Cancer patients; Communication; Cross-sectional studies; Decision making; Disclosure; Life expectancy; Life span; Medical prognosis; Metastases; Metastasis; Methods; Mortality; Optimism; Palliative care; Palliative treatment; Participation; Patient Preference; Patients; Physicians; Physician–patient relations; Preferences; Prognosis; Quality of life; Questionnaires; Regression analysis; Statistical analysis; Surveys; Thorax; Netherlands
• ISSN: 1471-2407; 1471-2407
• DOI: 10.1186/s12885-022-09911-8

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 aimed to investigate 1) the proportion of advanced cancer patients preferring not to know prognosis; 2) the reasons underlying patients' prognostic information preference; 3) the characteristics associated with patients' prognostic information preference; and 4) the concordance between physicians' perceived and patients' actual prognostic information preference. Methods This is a cross-sectional study with structured surveys (PROSPECT). Medical and thoracic oncologists included patients (n = 524), from seven Dutch hospitals, with metastatic/inoperable cancer and an expected median overall survival of [less than or equai to] 12 months. For analysis, descriptive statistics and logistic regression models were used. Results Twenty-five to 31% of patients preferred not to know a general life expectancy estimate or the 5/2/1-year mortality risk. Compared to patients preferring to know prognosis, patients preferring unawareness more often reported optimism, avoidance and inability to comprehend information as reasons for wanting limited information; and less often reported expectations of others, anxiety, autonomy and a sense of control as reasons for wanting complete information. Females (p < .05), patients receiving a further line of systemic treatment (p < .01) and patients with strong fighting spirit (p < .001) were more likely to prefer not to know prognosis. Concordance between physicians' perceived and patients' actual prognostic information preference was poor (kappa = 0.07). Conclusions We encourage physicians to explore patients' prognostic information preferences and the underlying reasons explicitly, enabling individually tailored communication. Future studies may investigate changes in patients' prognostic information preferences over time and examine the impact of prognostic disclosure on patients who prefer unawareness. Keywords: Patient Preference, Prognosis, Physician-patient relations, Communication, Disclosure, Palliative care, Neoplasm metastasis, Cross-sectional studies