Date of Award

January 2019

Document Type


Degree Name

Medical Doctor (MD)



First Advisor

Kerin Adelson



Sophia Shimer and Kerin Adelson. Section of Medical Oncology, Department of Internal Medicine, Yale School of Medicine, New Haven, CT.

Background: Acute leukemia poses unique challenges for prognostication. In many cases, cure is possible but unlikely and treatment is risky. Little is known about how patients perceive their prognosis. The purpose of this study was to assess prognostic understanding and end-of-life outcomes in patients with acute leukemia.

Methods: In this observational study, we surveyed patients admitted with acute leukemia and their treating hematologists. We elicited patient preferences for prognostic information and asked whether goals of care discussions had occurred. We then compared patient vs physician perceptions of treatment goals, chance of cure, expected survival, and chance that treatment would lessen suffering. Patient-physician concordance was assessed with kappa statistics. After a minimum follow-up of 1 year, we compared perceptions of prognosis to actual survival outcomes. Finally, we measured healthcare utilization at the end of life.

Results: We enrolled 76.6% (105/137) of eligible patients. We restricted our analysis to the 90 patient-physician dyads in which both parties completed a survey. Although 83.5% of patients wanted to be told their prognosis, only 56.8% recalled their physician disclosing treatment response rates. Most patients (82.2%) and physicians (78.9%) shared a goal of cure. However, they differed significantly in their perceptions of the chance of cure. Both non-relapsed and relapsed patients were more likely than their physicians to report a > 80% chance of cure (57.9% vs 5.2% for non-relapsed, p < 0.001; 38.7% vs 0.0% for relapsed, p < 0.001). Among those willing to estimate survival time, 75.7% of patients vs 28.4% of physicians estimated > 5 years (p < 0.001). Patients were also more likely to report a > 80% chance that treatment would lessen suffering (50.6% vs 21.6%, p < 0.001). Patient-physician concordance was poor for both chance of cure (κ = 0.05) and chance of lessening suffering (κ = 0.02). When prognostic perceptions were compared to actual survival outcomes, 54.1% of patients and 33.8% of physicians overestimated survival. The analysis of healthcare utilization at the end of life revealed high rates of in-hospital death (50.0%); hospitalization (93.8%) and ICU admission (54.2%) within 30 days of death; and hospice enrollment within 7 days of death (37.5%).

Conclusions: Most patients overestimate their prognosis compared to their hematologist’s assessment and actual survival outcomes. This finding is significant because, while optimism can help with coping, there is also a risk of unrealistic expectations influencing treatment decisions and patterns of care.


This thesis is restricted to Yale network users only. It will be made publicly available on 07/15/2021