ReviewIllness and prognostic understanding in patients with hematologic malignancies
Introduction
Patients' understanding of their prognosis is a critical element to ensure that they make informed decisions about their care that align with their values and preferences [[1], [2], [3], [4], [5], [6], [7], [8], [9]]. Assessing patients' prognostic understanding also helps clinicians tailor information to fit patients' individual needs [10,11], especially when patients are confronted with challenging decisions that carry considerable risk of morbidity and mortality [1]. The gravity of such decisions underscores the importance of patient access to accurate information about their illness and prognosis [1].
While studies exploring patients' understanding of illness and prognosis have primarily focused on patients with solid tumors [3,7,10,[12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23]], data in patients with hematologic malignancies are rapidly growing. Patients with hematologic malignancies face a unique illness trajectory and higher prognostic uncertainty compared to those with solid tumors [[24], [25], [26]]. Some hematologic malignancies are indolent and behave more like a chronic illness, while others have an acute onset but potentially curable [27]. Many patients with hematologic malignancies are faced with challenging decisions balancing the potential benefit of intensive therapies, such as high-dose intensive chemotherapy, hematopoietic stem cell transplantation (HCT), or CAR T-cell therapy, often at the expense of substantial toxicities and impairments to quality of life (QOL) [1,24]. Thus, patients with hematologic malignancies face illness- and treatment-specific factors that further complicate discussions about illness and prognostic understanding [24].
In this article, we will first describe the current literature on illness and prognostic understanding in patients with hematologic malignancies. We will then examine the insights gained from the literature about illness and prognostic understanding in patients with solid tumors in order to enhance our understanding of current research gaps in hematologic malignancies. Lastly, we will discuss future directions to inform our approach to studying illness and prognostic understanding in hematologic malignancies and its impact on patient outcomes.
Section snippets
Methods
We conducted an initial database search in January 2019, which was later updated in January 2020. PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) were searched using MESH and Boolean search techniques. Search terms included (Prognostic awareness[tiab] OR prognostic understanding[tiab]) AND (“Hematologic Diseases”[Mesh] OR “Hematologic Neoplasms”[Mesh] OR “Neoplasms”[Mesh] OR solid tumor OR solid tumor). We also reviewed the references for all articles identified in
Patients with hematologic malignancies report varying desires for prognostic information
Among patients with hematologic malignancies, studies have shown mixed results regarding patients' desire for information about their prognosis (Table 1). Many patients with hematologic malignancies say that they want open, honest disclosure of prognosis, even when the news is bad [1,28], while others do not want their doctor to be specific about prognosis [26,29]. In a qualitative study of older patients with acute myeloid leukemia (AML), many participants did not want to know their likelihood
Patients with hematologic malignancies have substantial prognostic misperceptions
Patients with hematologic malignancies often have substantial misperceptions about the possible risks and benefits of their cancer treatment, and they often overestimate their prognosis (Table 2) [1,26,[36], [37], [38]]. Studies have demonstrated that up to 82% of patients with hematological malignancies have a different understanding of their prognosis compared with their hematologist [1,36,37,39,40]. Patients with hematologic malignancies are often overly optimistic in estimating
Association between prognostic understanding and psychological outcomes
Amid the growing body of evidence on prognostic understanding in patients with hematologic malignancies, there is limited appreciation of the relationship between prognostic understanding and psychological outcomes in this population (Table 3) [1]. Some studies suggest that patients who acknowledge the terminal nature of their illness may experience significant emotional and psychological distress [1,42]. In one study, patients undergoing HCT who reported a more accurate understanding of their
Illness-specific factors
There are illness-specific factors related to hematologic malignancies that often complicate patients' and oncologists' understanding of the patients' prognosis and the ability to make informed decisions about the patients' medical care (Table 4) [24]. Patients with hematologic malignancies often experience an unpredictable illness course, with the possibility of cure persisting even in relapsed and refractory settings, contrary to most advanced solid tumors [24,28,[43], [44], [45]]. Moreover,
Insights gained from solid tumor oncology
There have been extensive studies on illness and prognostic understanding in patients with solid tumors. In this section, we will examine the insights gained from the literature about illness and prognostic understanding in solid tumor populations to help inform our understanding of current research gaps in hematologic malignancies.
Future considerations
Fig. 1 depicts suggested future directions of prognostic understanding research in hematologic malignancies. Given the crude measures available to assess prognostic understanding, there is a critical need to develop a validated, reliable, and rigorous measure to assess prognostic understanding in patients with hematologic malignancies [33]. This measure must take into account the complexity of prognostic understanding in its cognitive, emotional, and behavioral domains, with an emphasis on
Author contributions
Co-author contributions to the manuscript are as follows. All authors (TFG, JST, AE) have made substantial contributions to all of the following: (1) the conception and design of the manuscript, acquisition of the data, and analysis and interpretation of the data, (2) drafting the article or revising it critically for important intellectual content, (3) final review and approval of the final manuscript.
Role of the Funding Source
Dr. El-Jawahri is a Scholar in Clinical Research for the Leukemia and Lymphoma Society. This article has not been supported by the pharmaceutical industry.
Declaration of Competing Interest
The authors have no conflicts of interest to disclose.
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