People with leukemia and their oncologists have vastly different perceptions of prognosis

October 24, 2017, American Society of Clinical Oncology

A study of 100 people with acute myeloid leukemia (AML) receiving chemotherapy found that patient and physician perceptions of treatment risk and the likelihood of a cure varied widely. Overall, patients tended to overestimate both the risk of dying due to treatment and the likelihood of a cure. These findings will be presented at the upcoming 2017 Palliative and Supportive Care in Oncology Symposium in San Diego, California.

"Patients with AML face very challenging treatment decisions that are often placed upon them within days after being diagnosed," said senior study author Areej El-Jawahri, MD, assistant professor of medicine at Massachusetts General Hospital in Boston, MA. "Because they face a grave decision, they need to understand what the risks of treatment are versus the possibility of a cure."

About the Study

The researchers enrolled 50 patients who were receiving intensive care for AML (which usually meant hospitalization for 4 to 6 weeks) and 50 patients who were receiving non-intensive care (often given as outpatient treatment). The median patient age was 71 years, 92% were white, more than 50% had a college education, and most were from higher income brackets.

Within three days after starting treatment, both the patients and their physicians were given a questionnaire to assess how they perceived the likelihood of dying from the treatment. One month later, they completed a follow-up questionnaire to assess perceptions of prognosis. Within that timeframe, most patients received laboratory results that more definitively established the type and stage of cancer.

Key Findings

Regardless of whether they received intensive or non-intensive care, 63% of patients thought it was somewhat likely they would die due to treatment, and 28% thought it was extremely likely they would die. In contrast, 80% of the treating oncologists thought it was very unlikely that their patients would die due to treatment.

One month later, nearly all (90%) of patients thought it was somewhat or very likely they would be cured of their AML. In contrast, 74% of their oncologists thought it was unlikely or very unlikely that their patients would be cured. The gap between patient and doctor perceptions was most striking for patients receiving non-intensive therapy, with 44% of patients believing they would very likely be cured, while none of their oncologists thought this was very likely.

"There were several very important factors we were not able to capture in our study, including what was actually discussed between patients and their oncologists, and whether patients simply misunderstood or misheard the information conveyed to them," said Dr. El-Jawahri. "Perhaps most importantly, we did not audio-record the discussions between the patients and their physicians, which could provide additional details regarding barriers to accurate prognostic understanding in these conversations."

Prior to this study, the authors had looked at similar perceptions in people with lung, colorectal, and other cancers, as well as in people with blood cancers receiving transplantation. The gaps in perception of treatment risk and cure for patients as compared to their physicians were not as large in those diseases as in AML. The researchers attribute this to higher levels of distress seen in people with AML due to the urgency of their treatment decisions.

Next Steps

The researchers have found that early consideration of palliative care in a plan for patients with solid tumors improves patients' understanding of the prognosis. They hope to implement a similar study in patients with leukemia.

"Clearly there are important communication gaps between oncologists and their patients," said Dr. El-Jawahri. "We need to find ways to help physicians do a better job of communicating with their patients, especially in diseases like AML where stress levels are remarkably high."

Explore further: New referral pathway cuts palliative radiotherapy wait

More information: abstracts.asco.org/200/AbstView_200_197735.html

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