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Characteristics of patients with advanced cancer preferring not to know prognosis : a multicenter survey study. / van der Velden, Naomi C. A.; van Laarhoven, Hanneke W. M.; Burgers, Sjaak A. et al.

In: BMC cancer, Vol. 22, No. 1, 941, 12.2022, p. 941.

Research output: Contribution to journalArticleAcademicpeer-review

Harvard

van der Velden, NCA, van Laarhoven, HWM, Burgers, SA, Hendriks, LEL, de Vos, FYFL, Dingemans, A-MC, Jansen, J, van Haarst, J-MW, Dits, J, Smets, EM & Henselmans, I 2022, 'Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study', BMC cancer, vol. 22, no. 1, 941, pp. 941. https://doi.org/10.1186/s12885-022-09911-8

APA

van der Velden, N. C. A., van Laarhoven, H. W. M., Burgers, S. A., Hendriks, L. E. L., de Vos, F. Y. F. L., Dingemans, A-M. C., Jansen, J., van Haarst, J-M. W., Dits, J., Smets, E. M., & Henselmans, I. (2022). Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study. BMC cancer, 22(1), 941. [941]. https://doi.org/10.1186/s12885-022-09911-8

Vancouver

van der Velden NCA, van Laarhoven HWM, Burgers SA, Hendriks LEL, de Vos FYFL, Dingemans A-MC et al. Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study. BMC cancer. 2022 Dec;22(1):941. 941. doi: 10.1186/s12885-022-09911-8

Author

BibTeX

@article{62508ebaf79443a6a8a614087b86a141,
title = "Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study",
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 aimed to investigate 1) the proportion of advanced cancer patients preferring not to know prognosis; 2) the reasons underlying patients{\textquoteright} prognostic information preference; 3) the characteristics associated with patients{\textquoteright} prognostic information preference; and 4) the concordance between physicians{\textquoteright} perceived and patients{\textquoteright} 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{\textquoteright} perceived and patients{\textquoteright} actual prognostic information preference was poor (kappa = 0.07). Conclusions: We encourage physicians to explore patients{\textquoteright} prognostic information preferences and the underlying reasons explicitly, enabling individually tailored communication. Future studies may investigate changes in patients{\textquoteright} prognostic information preferences over time and examine the impact of prognostic disclosure on patients who prefer unawareness.",
keywords = "Communication, Cross-sectional studies, Disclosure, Neoplasm metastasis, Palliative care, Patient Preference, Physician–patient relations, Prognosis",
author = "{van der Velden}, {Naomi C. A.} and {van Laarhoven}, {Hanneke W. M.} and Burgers, {Sjaak A.} and Hendriks, {Lizza E. L.} and {de Vos}, {Filip Y. F. L.} and Dingemans, {Anne-Marie C.} and Joost Jansen and {van Haarst}, {Jan-Maarten W.} and Joyce Dits and Smets, {Ellen Ma} and Inge Henselmans",
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: {\textcopyright} 2022, The Author(s).",
year = "2022",
month = dec,
doi = "10.1186/s12885-022-09911-8",
language = "English",
volume = "22",
pages = "941",
journal = "BMC cancer",
issn = "1471-2407",
publisher = "BioMed Central",
number = "1",

}

RIS

TY - JOUR

T1 - Characteristics of patients with advanced cancer preferring not to know prognosis

T2 - a multicenter survey study

AU - van der Velden, Naomi C. A.

AU - van Laarhoven, Hanneke W. M.

AU - Burgers, Sjaak A.

AU - Hendriks, Lizza E. L.

AU - de Vos, Filip Y. F. L.

AU - Dingemans, Anne-Marie C.

AU - Jansen, Joost

AU - van Haarst, Jan-Maarten W.

AU - Dits, Joyce

AU - Smets, Ellen Ma

AU - Henselmans, Inge

N1 - 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).

PY - 2022/12

Y1 - 2022/12

N2 - 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.

AB - 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.

KW - Communication

KW - Cross-sectional studies

KW - Disclosure

KW - Neoplasm metastasis

KW - Palliative care

KW - Patient Preference

KW - Physician–patient relations

KW - Prognosis

UR - http://www.scopus.com/inward/record.url?scp=85137110491&partnerID=8YFLogxK

U2 - 10.1186/s12885-022-09911-8

DO - 10.1186/s12885-022-09911-8

M3 - Article

C2 - 36050628

VL - 22

SP - 941

JO - BMC cancer

JF - BMC cancer

SN - 1471-2407

IS - 1

M1 - 941

ER -

ID: 25929031