Prognostic understanding, quality of life and mood in patients undergoing hematopoietic stem cell transplantation

Abstract

Little is known about how patients undergoing stem cell transplantation (HCT) and their family caregivers (FC) perceive their prognosis. We examined prognostic understanding in patients undergoing HCT and their FC and its relationship with quality of life (QOL) and mood. We conducted a longitudinal study of patients (and FC) hospitalized for HCT. We used a questionnaire to measure participants’ prognostic understanding and asked the oncologists to estimate patients’ prognosis prior to HCT. We assessed QOL and mood weekly and evaluated the relationship between prognostic understanding and QOL and mood using multivariable linear mixed models. We enrolled 90 patients undergoing (autologous n=30); myeloablative (n=30) or reduced intensity allogeneic (n=30)) HCT. 88.9% of patients and 87.1% of FC reported it is ‘extremely’ or ‘very’ important to know about prognosis. However, 77.6% of patients and 71.7% of FC reported a discordance and more optimistic prognostic perception compared to the oncologist (P’s < 0.0001). Patients with a concordant prognostic understanding with their oncologists reported worse QOL (β = −9.4, P = 0.01) and greater depression at baseline (β = 1.7, P = 0.02) and over time ((β = 1.2, P < 0.0001). Therefore, Interventions are needed to improve prognostic understanding, while providing patients with adequate psychological support.

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

“…These data are particularly concerning given the uncertainty regarding the optimal treatment strategy for older patients with AML and thus the importance of helping patients balance the risk and benefits of treatment to ensure informed decision making. Interestingly, patients who reported a more realistic estimate of cure reported higher depression symptoms, which is consistent with our prior studies of patients with advanced solid tumors . Although these findings should not hinder clinicians’ disclosure of prognosis for patients with serious cancers, they do highlight the need for further study of how best to support patients who correctly acknowledge their prognosis.…”

“…At baseline, we assessed patients’ decision‐making preferences and their perceptions of their treatment‐related mortality using three items that have been previously validated and used in the literature . Specifically, patients reported the role they prefer when making decisions about their leukemia treatment (i.e., “prefer to make decisions about treatment with little or no input from my oncologist,” “prefer to make decisions after considering my oncologist's opinion,” “prefer that my oncologist make the decision after considering my opinion,” or “prefer that my oncologist make the decision with little or no input from me”).…”

“…We used the Prognosis and Treatment Perception Questionnaire (PTPQ) to assess participants’ preferences for information about their treatment and their understanding of likelihood of cure . We developed the PTPQ using items from a number of different measures and conducted cognitive interviews with patients to ensure its content validity, readability, and acceptability . As the prognosis of patients with AML is dependent on molecular and cytogenetic factors that are not available at the time of diagnosis, we asked patients to complete the PTPQ at 1 month after enrollment.…”

Beliefs About Advanced Cancer Curability in Older Patients, Their Caregivers, and Oncologists

“…Prior studies on discordance in beliefs about cancer curability or estimated survival have been conducted in specific cancer types, had relatively small sample sizes, or did not focus on older adults and their caregivers . In addition, to our knowledge, there have been no reports about oncologist characteristics associated with discordance, and few studies have examined the severity of discordance in cancer curability .…”

When and why should patients with hematologic malignancies see a palliative care specialist?

“…However, when patients are asked about their preferences, they overwhelmingly say that they want open, honest disclosure of prognosis, even when the news is bad. 41,42 Furthermore, patients and families generally object to the notion that their doctor might keep information from them. 43 Patients receiving palliative care are also able to transition their hopes from a complete focus on cure to hoping for other important goals, such as good symptom control, prolonging life while preserving quality-of-life, and spending quality time with their loved ones.…”