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Acute Myeloid Leukemia: Understanding the Patient’s Experience

TOP - May 2016, Vol 9, No 2

Patients with acute myeloid leukemia (AML) often feel blindsided by their diagnosis, have trouble understanding their treatment choices, and suffer symptoms that are inadequately addressed. This is a patient population with sizable, and unmet, palliative care and psychosocial needs, researchers from Duke University School of Medicine reported at the 2015 American Society of Hematology Annual Meeting.

Thomas W. LeBlanc, MD, MA, described 2 studies that he led. One study explored patients’ experiences at diagnosis, their satisfaction with communication from the oncology team, and their experience in making treatment decisions.1 The second study evaluated symptom control during induction chemotherapy.2

How Patients Described Their Experience

Using a semistructured qualitative interview that they developed, the researchers interviewed 32 hospitalized AML patients (median age, 62 years) within 1 month of starting a new regimen; all had high-risk AML due to age >59 years, relapsed/refractory disease, or complex cytogenetics. The researchers identified 4 overarching themes: (1) uncertainty, (2) suddenness, (3) difficulty processing information, and (4) need for better communication.

Patients frequently described a high degree of uncertainty relating to their prognosis, the number and nature of available treatments, and even the definition of the term “prognosis,” Dr LeBlanc reported. “In some cases this uncertainty was a source of hope and left open the possibility of a positive outcome. In other cases this uncertainty was crippling and frustrating,” he said.

The “suddenness” patients often described feeling “overwhelmed,” “devastated,” and “blindsided,” leaving them unable to process information and make a treatment decision. Patients often reported being “fine” 2 weeks earlier, Dr LeBlanc said. “Many had not anticipated such a severe change in health status,” he noted. “And to make things worse, many patients had to travel to a tertiary care center in an area where they knew no one.”

Processing complex information about treatment and prognosis was difficult for most patients, and they often dichotomized their options as “do or die,” rather than appreciating the various degrees of intensity and risk among the options. This led them to perceive a lack of good treatment choices, which triggered in many patients negative coping behaviors, such as cognitive distancing and denial.

Most patients felt they received adequate information, but some said that the information did not meet their own personal needs. Patients reporting this “mismatch” tended to be less satisfied with their experience. “In particular, receiving bad news from a doctor they did not know stood out as a negative experience for many patients,” Dr LeBlanc said. “We found that patients were often feeling well a few weeks before, and now they are getting this bad news from someone they’ve never met, maybe not delivering the news in the best way, and then the doctor leaves the room and the patient is left to pick up the pieces.”

Dr LeBlanc suggested that this is an area where nurses could play an important role for the patient and family. “We don’t usually do a good job of making sure the care nurse is there, in the room, when the discussion is taking place. This is a practical intervention that can help.”

As these factors converge to make it difficult for patients to process complex information, he added, “the recommended model of shared decision-making may be of limited utility in the AML setting.”

High Symptom Burden

AML patients receiving induction chemotherapy face many symptoms, impaired quality of life, and moderate psychological distress, the second study showed. “Induction chemotherapy for AML is more intensive than many other cancer treatments and may be associated with a different symptom burden,” Dr LeBlanc said. Not much is known about the most prevalent symptoms during AML induction and how they change over time and with remission status, nor about the trajectory of quality of life and distress scores in this population. The Duke University researchers performed a prospective, longitudinal, observational patient-reported outcomes study to find out more. They enrolled 43 inpatients starting induction chemotherapy and used validated instruments to assess their symptoms, quality of life, and distress weekly during their month-long hospitalization and monthly thereafter.

“As expected, symptoms were most prominent during the second and third weeks of treatment,” Dr LeBlanc reported. “However, across all 4 weeks of induction, patients consistently reported 5 symptoms at a moderate or severe level.” Despite supportive care measures, these included poor appetite (35%), dry mouth (37%), difficulty sleeping (38%), taste disorders (44%), and fatigue (56%). Other prominent moderate-to-severe symptoms included diarrhea (35%), daytime sleepiness (30%), and nausea (27.5%).

Mean quality of life by the FACT-Leu assessment worsened substantially from week 1 (121.8) to week 2 (108.2), and then slowly recovered to surpass baseline levels by month 3; quality of life continued to improve during 1 year of follow-up.

The mean distress score across all 4 weeks of induction was 4 (the threshold for recommended referral to additional support services), but dropped by week 4. By remission status, the study showed that patients with persistent disease after induction had progressively worse quality of life and more distress than patients who achieved remission.

“Most of the symptom assessment that gets done when we are rounding on AML patients is done by nurses,” Dr LeBlanc said. “The more extensive they can be using objective validated questionnaires, the better nurses will be in recognizing and addressing the symptoms that are causing distress.”


1. LeBlanc TW, Fish LJ, Bloom CT, et al. Patient experiences of acute myeloid leukemia (AML): a qualitative study about diagnosis, illness understanding, and treatment decision-making. Presented at: American Society of Hematology 57th Annual Meeting & Exposition; December 5-8, 2015; Orlando, FL. Abstract 2119.
2. LeBlanc TW, Wolf SP, El-Jawahri A, et al. Symptom burden, quality of life, and distress in acute myeloid leukemia patients receiving induction chemotherapy: results of a prospective electronic patient-reported outcomes study. Presented at: American Society of Hematology 57th Annual Meeting & Exposition; December 5-8, 2015; Orlando, FL. Abstract 4496.

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