Patient Experiences of Acute Myeloid Leukemia (AML): A Qualitative Study about Diagnosis, Illness Understanding, and Treatment Decision-Making

Background: Many patients with AML lack prognostic understanding, which may limit their ability to participate in shared decision-making about treatments. The underlying drivers of this misunderstanding are not well understood, so we sought to characterize the experience of being diagnosed with AML, receiving information, and making a treatment decision. We expected to discover areas for improvement in clinical practice.

Methods: We developed a semi-structured qualitative interview guide to explore patients’ experiences at diagnosis, satisfaction with clinical communication, factors related to prognostic understanding, and the treatment decision-making process. We enrolled 33 hospitalized patients with AML within 7 days of starting a new treatment regimen, and interviewed only those with high-risk AML due to either age >59, relapsed/refractory disease, or complex cytogenetics.  We audio recorded interviews and transcribed them for qualitative analysis. Using cycles of open and axial coding, we developed a codebook that was sequentially applied to all transcripts. Further refinement of codes and development of themes occurred via group discussion.

Results: Four themes emerged from this analysis, relating to: (1) uncertainty, (2) suddenness, (3) difficulty processing information, and (4) need for better communication. Patients frequently described uncertainty related to their prognosis, the number and nature of available treatments, and even the definition of the term “prognosis.”  In some cases this uncertainty was a source of hope, leaving open the possibility of a positive outcome.  In other cases this uncertainty was crippling and frustrating. In terms of suddenness of the AML diagnosis, many patients described it as “overwhelming,” “devastating,” and “blindsiding,” making them unable to process information and make a treatment decision. Many had not anticipated this severe change in health status. Compounding the suddenness for several patients was the need to travel far from home to be treated at a tertiary center. Many patients found processing the complex information about their diagnosis and treatment options too difficult, which negatively impacted their understanding of available treatments.  It was common for patients to dichotomize options into either “do or die,” when there were actually several available options of varying intensity and risk. Thus, patients perceived a lack of treatment choices and frequently exhibited negative coping behaviors, such as cognitive distancing and denial. In terms of communication, most described their physicians as providing adequate information, yet sometimes described a mismatch between their needs and the type of information physicians provided.  In the cases of mismatch, patients were less satisfied. Receiving bad news from a doctor they did not know stood out as a difficult and negative experience for many patients, and several described poor communication around the time of diagnosis. 

Conclusions: Patients with AML face a unique, difficult situation characterized by sudden changes in health and pressure to make quick treatment decisions. This results in difficulty processing information, and is sometimes complicated by a mismatch between patients’ informational preferences and clinicians’ communication styles. This scenario appears to compound the difficulty of processing complex information, and probably impairs patients’ abilities to make a truly informed decision.  The recommended model of shared decision-making may be of limited utility in the AML setting.  Targeted interventions are needed to improve AML patients’ understanding of their illness and treatment options, and their experiences with diagnosis and treatment decision-making.