Older AML Patients Vastly Misperceive Treatment Risks and Possible Outcomes


A new study concludes that more education is needed for adults 60 and older who must make treatment decisions about their acute myeloid leukemia (AML) diagnosis.

A new study shows that adults over 60 years of age who have acute myeloid leukemia (AML) tend to overestimate both the risk of dying due to treatment and the likelihood of a cure, compared with their oncologists’ estimates.

When faced with the choice between risky, intensive chemotherapy that offers a small chance of a cure versus non-intensive chemotherapy meant to improve physical comfort and quality of life, it is crucial that patients understand the implications of choosing one over the other.

Researchers concluded that older adults with AML need to be better educated about their prognoses, treatment options and likely outcomes so they can make more informed decisions about their care.

Results of this study were presented during an Oct. 23 presscast in advance of the 2017 Palliative and Supportive Care in Oncology Symposium, to be held Oct. 27 and 28 in San Diego, California.

A Gap in Perception

Of the 100 older adults with AML enrolled in the study, 50 were receiving intensive care, which typically meant hospitalization for four to six weeks, and 50 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 3 days after starting treatment, both the patients and their physicians were given a questionnaire to assess how they perceived the likelihood of death from the treatment. One month later, they completed a follow-up questionnaire to assess perceptions of prognosis.

Responses showed that, 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.

The largest gap in perception had to do with expected treatment outcomes. A month after beginning treatment, 90% of patients thought it was somewhat or very likely that 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 in cases involving non-intensive therapy. In that group, 44% of patients believed they would very likely be cured, while none of their oncologists thought this was very likely.

Bigger Gap in Understanding Among AML Patients Than Among Other Cancer Types Studied

Prior to this study, the authors had looked at the level of understanding about treatment intentions and expected outcomes in people with other cancer types. The gaps in perception of treatment risk and cure for patients compared with their physicians were not as large in those diseases as in AML. The researchers attribute this to higher levels of distress in people with AML due to the urgency of their treatment decisions.

“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. “Because they face a grave decision, they need to understand what the risks of treatment are versus the possibility of a cure.”

Early Intervention Needed

El-Jawahri and her colleagues have found that early consideration of palliative care in a treatment plan for patients with solid tumors improves patients’ understanding of their prognosis, and hope to study this in leukemia patients in the future.

“We really do need interventions to facilitate communications and ensure accurate prognostic understanding in this patient population, where understanding the treatment risks and prognosis can have significant effects on their treatment choices,” she said.

“A shared understanding of prognosis and treatment risks between clinicians and patients is crucial in informed consent, and this study adds to the literature on the deficiencies that exist in accurate knowledge on both sides of this interface,” said Andrew S. Epstein, MD, an expert representing the American Society of Clinical Oncology, a sponsor of the conference.

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