Department of Medical Psychology, Amsterdam Public Health Research Institute, Cancer Center Amsterdam, Amsterdam University Medical Centers, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands.
BMC Cancer. 2022 Sep 1;22(1):941. doi: 10.1186/s12885-022-09911-8.
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.
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.
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).
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.
对于一些晚期癌症患者来说，不知道预后至关重要。然而，在知情决策的时代，人们很容易忽视这种不知情的潜在保护作用。我们旨在调查：1）不希望了解预后的晚期癌症患者的比例；2）患者对预后信息偏好的潜在原因；3）与患者预后信息偏好相关的特征；4）医生感知到的和患者实际的预后信息偏好之间的一致性。
这是一项横断面研究，采用了结构性调查（PROSPECT）。来自荷兰七家医院的 524 名医学和胸部肿瘤学家纳入了转移性/不可切除癌症且预期中位总生存期≤12 个月的患者。采用描述性统计和逻辑回归模型进行分析。
25%至 31%的患者表示不希望了解一般预期寿命估计或 5/2/1 年死亡率风险。与希望了解预后的患者相比，选择不了解预后的患者更常将乐观、回避和无法理解信息作为希望获得有限信息的原因；而将他人的期望、焦虑、自主性和控制感作为希望获得完整信息的原因较少。女性（p<0.05）、接受进一步系统治疗的患者（p<0.01）和具有强烈斗志的患者（p<0.001）更倾向于不希望了解预后。医生感知到的和患者实际的预后信息偏好之间的一致性较差（kappa=0.07）。
我们鼓励医生明确地探讨患者的预后信息偏好及其潜在原因，以便进行个性化的沟通。未来的研究可以调查患者在不同时间对预后信息偏好的变化，并研究预后披露对选择不了解预后的患者的影响。
