Patient-Clinician Discordance in Perceptions of Treatment Risks and Benefits in Older Patients with Acute Myeloid Leukemia

Areej El-Jawahri, Margaret Nelson-Lowe, Harry VanDusen, Lara Traeger, Gregory A Abel, Joseph A Greer, Amir Fathi, David P Steensma, Thomas W LeBlanc, Zhigang Li, Daniel DeAngelo, Martha Wadleigh, Gabriela Hobbs, Julia Foster, Andrew Brunner, Philip Amrein, Richard M Stone, Jennifer S Temel, Areej El-Jawahri, Margaret Nelson-Lowe, Harry VanDusen, Lara Traeger, Gregory A Abel, Joseph A Greer, Amir Fathi, David P Steensma, Thomas W LeBlanc, Zhigang Li, Daniel DeAngelo, Martha Wadleigh, Gabriela Hobbs, Julia Foster, Andrew Brunner, Philip Amrein, Richard M Stone, Jennifer S Temel

Abstract

Background: Older patients (≥60 years) with acute myeloid leukemia (AML) face difficult decisions regarding treatment with "intensive" chemotherapy that carries significant toxicity for a small chance of a cure versus "nonintensive" chemotherapy to control the disease, but with fewer side effects. However, studies of how these patients understand the risks and benefits of such treatments are lacking.

Methods: We conducted a longitudinal study of older patients newly diagnosed with AML assessing patients' (n = 100) and oncologists' (n = 11) perceptions of treatment-related mortality at enrollment and prognosis at 1 month. We examined concordance between patients' and oncologists' perceptions using Cohen's kappa (κ < 0.10 indicates little/no concordance).

Results: We enrolled patients within 72 hours of initiating intensive (n = 50) or nonintensive (n = 50) chemotherapy. Whereas 91% of patients reported that they were "somewhat" to "extremely likely" to die from treatment, oncologists estimated that only 12% were at high risk of dying because of treatment (κ = -0.09). Ninety percent of patients reported that they were "somewhat" or "very likely" to be cured of their AML, whereas oncologists estimated this chance of cure for only 31% of patients (κ = 0.05). Among patients receiving intensive chemotherapy, 98% reported that they were "somewhat" or "very likely" to be cured, whereas their oncologists estimated this likelihood of cure for only 49% (κ = 0.04); among those receiving nonintensive chemotherapy and their clinicians, these proportions were 82% and 13%, respectively (κ = 0.03). Patients who indicated a lower likelihood of cure reported significantly higher depression symptoms (p = .03).

Conclusion: Older patients with AML overestimate the risks and benefits of treatment. Interventions to facilitate communication and enhance patients' understanding of the goals of therapy and treatment risk are needed.

Implications for practice: Older patients with acute myeloid leukemia (AML) are confronted with challenging decisions regarding treatment with "intensive" chemotherapy that carries significant toxicity for a small chance of a cure versus "nonintensive" chemotherapy to control the disease, but with fewer side effects. A clear understanding of the likely outcome and risks of the various treatment strategies is essential for these patients to make informed decisions about their care. This article reports that older patients with AML overestimate both the risks and benefits of treatment and have substantial misperceptions about their prognosis. Interventions to enhance patients' understanding of their prognosis and treatment risk are needed.

Keywords: Acute myeloid leukemia; Decision making; Perception of prognosis; Prognostic understanding; Treatment risk.

Conflict of interest statement

Disclosures of potential conflicts of interest may be found at the end of this article.

© AlphaMed Press 2018.

Figures

Figure 1.
Figure 1.
Flow diagram. Abbreviation: AML, acute myeloid leukemia.
Figure 2.
Figure 2.
Patients’ and oncologists’ perceptions of the risk of treatment‐related mortality.Abbreviation: TRM, treatment‐related mortality.
Figure 3.
Figure 3.
Patients’ and oncologists’ perceptions of the likelihood of cure of leukemia.
Figure 4.
Figure 4.
Patients’ and oncologists’ perceptions of the likelihood of cure. (A): Perceptions among those receiving intensive chemotherapy. (B): Perceptions among those receiving nonintensive chemotherapy.

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