Treatment Decision-Making and Decisional Support Experiences Among Acute Myeloid Leukemia Survivors

Background: With the availability of newer acute myeloid leukemia (AML) treatment combinations and targeted therapies, it is important for patients to understand all available treatment options, including their associated benefits, risks and side effects, before treatment decisions are made. Open communication between patients and clinicians about such options is a critical step toward collaborative treatment decision-making. The purpose of this study is to characterize AML patient experiences regarding treatment decision-making (TDM) and satisfaction with health care team (HCT) communication.

Methods: Fifty-six (56) AML patients and survivors enrolled in the Cancer Support Community's online survey, the Cancer Experience Registry®. Forty (40) participants completed survey items pertinent to TDM and satisfaction with HCT communication. Items assessed participants' knowledge about treatment options prior to making a treatment decision, involvement in the TDM process, perceived preparation to discuss treatment options with their doctor, satisfaction with their doctor's explanation of the benefits of each treatment option, satisfaction with their doctor's explanation of the risks and side effects of each treatment option (response options for these five items: 0-4, where 0=Not at all and 4=Very much), and desire for additional support prior to making a treatment decision (response options: Yes/No). Frequencies for these items and socio-demographic and clinical history measures were examined.

Results: Among the 40 participants who completed TDM measures, 55% were female and 95% were White, with a mean (SD) age of 52.7 (12.9) years (range: 20-77). Mean time since diagnosis was 5.6 years. Forty-three (43%) percent of participants reported that they were receiving treatment at the time of survey completion, and 28% indicated having ever experienced a recurrence of their cancer. While 65% of participants reported that they were quite a bit or very much involved in their TDM process, only 43% indicated that they were quite a bit or very much knowledgeable about their treatment options prior to making their treatment decision, and 40% of participants reported that they would have liked more support prior to making their treatment decision. More than half of respondents indicated that they were quite a bit or very much satisfied with their doctor's explanation of the benefits of each treatment option (55%), and the risks and side effects of each treatment option (58%); however, only 38% of participants indicated that they felt quite a bit or very much prepared to discuss treatment options with their doctor.

Conclusions: Findings demonstrate that substantial proportions of AML patients and survivors express considerable involvement in their treatment decision-making process, and satisfaction with their doctor's explanation of the benefits and the risks and side effects of each treatment option. However, fewer individuals diagnosed with AML reported high levels of knowledge about their treatment options prior to making their treatment decision, and relatively few felt prepared to discuss treatment options with their doctor. Furthermore, many AML patients and survivors indicated a desire for additional support prior to making a treatment decision. Together, results highlight a need for resources, such as TDM guides or in-person counseling, to enhance HCT communication surrounding TDM for individuals with AML. Such efforts may provide AML patients with sufficient knowledge about treatment options to ensure that they feel adequately prepared to discuss these options and select the appropriate treatment pathway.