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

Naomi C.A. van der Velden*, Hanneke W.M. van Laarhoven, Sjaak A. Burgers, Lizza E.L. Hendriks, Filip Y.F.L. de Vos, Anne Marie C. Dingemans, Joost Jansen, Jan Maarten W. van Haarst, Joyce Dits, Ellen Ma Smets, Inge Henselmans

*Corresponding author for this work

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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 ≤ 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.

Original languageEnglish
Article number941
JournalBMC Cancer
Issue number1
Publication statusPublished - Dec 2022

Bibliographical note

Funding Information:
The authors disclosed receipt of financial support by the Dutch Cancer Society [grant number 11547] for the research of this article. The funder was not involved in the study design, data collection, data analyses, data interpretation or report of the article.

Publisher Copyright:
© 2022, The Author(s).


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