Patients with leukemia, lymphoma and other cancers who choose to undergo bone marrow transplantation often overestimate the success rate of the procedure, according to a study published in today's Journal of the American Medical Association (JAMA).
Researchers at Dana-Farber Cancer Institute led by Stephanie J. Lee, MD, MPH, measured the survival expectations of 313 patients and their physicians prior to bone marrow or stem cell transplantation and then compared those expectations with actual outcomes.
Some 72% of their patients were considered lower risk because they either had early stage disease or were given their own bone marrow or blood back as part of the transplant. These patients correctly estimated that they had a low risk of death from the procedure.
However, patients with advanced leukemia, lymphoma or other cancers undergoing more risky types of transplant procedures experienced treatment-related death rates more than twice what they estimated. Their physicians provided more accurate estimates, but they too tended to underestimate mortality.
"Stem cell transplantation offers the potential of life extension or cure for otherwise fatal diseases, but there is always a risk of cancer relapse or treatment-related death after the transplant." says Lee. "We do not know the reasons for discrepancies between patient expectations, physician expectations and reality, but it is easy to imagine that as prognosis worsens, both patients and physicians may avoid dwelling on discouraging statistics and focus instead on the possibility of cure."
Researchers also measured patient and physician expectations for cure. Each of the four patient risk groups studied anticipated very high cure rates regardless of the type of transplant or stage of disease.
In reality, those with the highest risk of death and relapse (8% of patients in the study) had only a 10% chance of being alive and free of their disease 2 years following transplantation.
"These are emotionally difficult situations for both patients and physicians," said Lee. "If all patients asked for explicit prognostic information, discussions would be more straightforward. When patients don't ask these questions or don't seem to want to know the answers, I think physicians struggle with the balance between informing patients about treatment risks and maintaining hope.
"We do not know if patients undergoing bone marrow transplantation, particularly those who have no other options for cure, would be helped or harmed if forced to acknowledge grim statistics."
Researchers note they do not know how prognostic information was communicated or what process led to the formation of patient expectations because they did not observe doctor-patient interactions. However, they believe that these research findings have important implications for physicians and patients.
"Discrepancies between doctor and patient expectations are certainly not new," says Jane Weeks, MD, senior author of the study and director of the Center for Outcomes and Policy Research at Dana-Farber. "However, this study emphasizes the need for physicians to ask patients what they expect from treatment options, especially when high risks are involved.
"Even if this discussion doesn't change their desire to undergo transplantation, it may help patients and their families better prepare themselves for the challenges ahead."
Dana-Farber Cancer Institute is a principal teaching affiliate of the Harvard Medical School and is among the leading cancer research and care centers in the United States. It is a founding member of the Dana-Farber/Harvard Cancer Center (DF/HCC), a designated comprehensive cancer center by the National Cancer Institute. - By Janet Haley Dubow
Dana-Farber Cancer Institute
[Contact: Janet Haley Dubow]