How Do Perceptions about Side Effects Influence Treatment Decisions and Outcomes in AML?

Patients’ negative perception of the side effects of intensive chemotherapy (IC) for acute myeloid leukemia (AML) may be associated with undertreatment and worse outcomes, according to results of an international study presented at the 2021 American Society of Clinical Oncology Annual Meeting.

“When discussing side effects in detail, there was a disconnect between perceptions of patients not on treatment, and side effects that patients on chemotherapy actually experienced,” the study researchers, led by Dawn Maze, MD, of the Princess Margaret Cancer Centre at the University of Toronto in Canada, wrote.

To determine perceptions of treatment side effects, researchers conducted one-on-one, 60-minute interviews with 28 patients with AML who were ≥65 years old and unsuitable for (or refused) IC, 25 of their adult relatives, and 10 independent physicians specializing in AML from the U.S., U.K., and Canada. Investigators crafted open-ended questions about the treatment decision-making process and asked participants to rate the importance of several factors from zero (not important) to three (very important).

At the time of the interviews, 13 of the patients were not receiving treatment, 11 were undergoing non-intensive chemotherapy (NIC), three had discontinued NIC, and one was receiving best supportive care (BSC).

Side effects were more frequently rated as a “very important” factor in making treatment decisions among patients not on treatment (n=9; 69.2%) and their family members (n=12; 92.3%), compared with patients who had received NIC (n=5; 45.5%), their relatives (n=3; 27.3%), and physicians (n=4; 40%).

Patients who were not on treatment expressed greater concern that side effects of chemotherapy would be worse than the symptoms of their illness (n=6). Fear of side effects was cited as the primary reason for not undergoing treatment (n=9).

Perceptions were less negative among the 11 patients who had experienced NIC, the authors noted, most of whom told the interviewers that their side effects had little impact on their lives (n=9). Time commitment was cited as the worst aspect of NIC. Most of the frequently reported symptoms experienced by patients treated with NIC were considered by the researchers to be mild, including fatigue, reduced appetite, feeling generally unwell, nausea, and injection site irritation.

This disparity in beliefs between patients who had never been treated and patients who had experienced NIC suggests that patients perceive the side effects of treatment for AML as worse than they are, the authors wrote. “There is a need for more patient education and resources about the lived treatment experience, to enhance understanding and mitigate pre-conceived notions of side effects,” they added.

The study’s findings are limited by the small patient population, and the findings may not be applicable to patients undergoing treatment for other malignancies.

Study authors report relationships with Pfizer, which provided research funding for this study.


Maze D, Walter RB, Merino DM, et al. A mixed methods study exploring the role of perceived side effects on treatment decision-making in older adults with acute myeloid leukemia (AML). Abstract #7016. Presented at the 2021 American Society of Clinical Oncology Annual Meeting, June 4-8, 2021.