Assessment of prognostic understanding, perceived goals of care, and quality of life in hospitalized patients with leukemia or multiple myeloma


BACKGROUND: Prior studies reveal a lack of illness understanding and prognostic awareness among patients with hematologic malignancies. Prognostic awareness and illness understanding among hospitalized patients with acute leukemia and multiple myeloma were evaluated, and patient-oncologist discordance was measured.

METHODS: Patients with acute leukemia and multiple myeloma hospitalized at Mount Sinai Hospital between February 2018 and February 2020 were enrolled. Patients were administered a survey assessing prognostic awareness, goals of care (GOC), and quality of life. Oncologists completed a similar survey for each patient. Discordance across the cohort of patients and oncologists using the likelihood-ratio χ2 test and within patient-oncologist pairs using the κ statistic was assessed.

RESULTS: Sixty patients and 15 oncologists were enrolled. Among patients, 32 (53%) self-identified as White, 15 (25%) as self-identified as Black, and 9 (15%) self-identified as Hispanic. Across the entire cohort, patients were significantly more optimistic about treatment goals compared to oncologists (P < .001). Within patient-oncologist pairs, oncologists were significantly more optimistic than patients with respect to line of treatment (κ = 0.03). There was also a significant difference surrounding life expectancy (κ = 0.05), with 39 patients (65%) responding “don’t know” or deferring to a faith-based response compared to 18 oncologists (30%).

CONCLUSIONS: Significant discordance regarding prognosis and GOC among patients with hematologic malignancies and their oncologists was observed. These data support future interventions to improve prognostic understanding among this patient population to facilitate informed treatment choices.

LAY SUMMARY: Patients with blood cancer are known to have poor levels of illness understanding, and the role of patient-oncologist discordance is not well studied. We surveyed patients and oncologists about their understanding of disease prognosis, goals of care, and quality of life. We measured differences in patients’ and oncologists’ understanding of these key factors by comparing survey responses. There was significant disagreement between patients and oncologists surrounding prognosis and goals of care. Interventions are needed to improve patients’ understanding of prognosis, which will help them make more informed, value-aligned treatment choices.