Context Stem cell transplantation is associated with considerable morbidity
and mortality. The extent to which patients and their physicians correctly
estimate these risks is unknown.
Objective To measure the expectations of patients and physicians prior to stem
cell transplantation and correlate them with actual outcomes after transplantation.
Design Prospective cohort study with baseline questionnaire administered July
1996 through November 1999 and follow-up to May 2000.
Setting Tertiary care transplant center in the United States.
Participants Of 458 surveys mailed, evaluable returned surveys were included for
313 autologous and allogeneic stem cell transplantation patients and their
Main Outcome Measures Patient and physician expectations prior to transplantation (measured
on 6-point Likert scales) of treatment-related mortality, cure with transplantation,
and cure without transplantation; actual treatment-related mortality and disease-free
survival among patients with at least 1 year of follow-up after transplantation
(n = 263).
Results Both patients and physicians were fairly accurate in estimating treatment-related
mortality when actual mortality was less than 30%. However, in situations
in which mortality was higher than 30%, such as with allogeneic transplantation
for intermediate or advanced disease, physician expectations were lower, while
patients remained optimistic. Similarly, physicians provided lower estimates
of disease-free survival in cases of intermediate or advanced disease while
patient expectations remained high and constant regardless of disease stage.
Conclusions Patients and their physicians have the most concordant and accurate
expectations when the outcome of stem cell transplantation is likely to be
favorable. However, patients with more advanced disease fail to recognize
the higher risks associated with their situations.