Informed and [ACT]IVATED Decision-Making in Acute Myeloid Leukemia Care

Patient Empowerment Network (PEN) is committed to efforts to educate and empower patients and care partners in the acute myeloid leukemia (AML) community. AML treatment options are ever-evolving with research advancements in treatments and testing, and it’s critical for patients and families to educate themselves with health literacy tools and resources on the latest information in AML care. With this goal in mind, PEN created the [ACT]IVATED AML program, which aims to inform, empower, and engage patients to stay abreast of up-to-date information in acute myeloid leukemia care.

The [ACT]IVATED AML program is aimed at newly diagnosed AML patients, yet it can help patients at any stage of disease. [ACT]IVATED AML helps patients and care partners stay updated on the latest options for their AML, provides patient activation tools to help overcome care disparities and barriers to accessing care, and powerful tips for self-advocacy, coping, and living well with a blood cancer.

Cancer survivor Lisa Hatfield interviewed experts Dr. Sara Taveras Alam from UTHealth Houston and Dr. Andrew Hantel from Dana-Farber Cancer Institute as part of the [ACT]IVATED AML program.

Refining Acute Myeloid Leukemia Care

As AML treatment options have continued to grow, there are more decisions to be made and more testing to be performed for AML monitoring. Bone marrow biopsies serve as a crucial piece of the AML care puzzle by supplying information that helps guide optimal patient care. Dr. Sara Taveras Alam shared the role that bone marrow biopsy carries in the patient care journey. “I think the most crucial time for bone marrow biopsies are at the diagnosis and after induction, if we have achieved our goal to achieve remission, then the bone marrow biopsy may be repeated monthly, depending on the institution that the patient is going to.” 

Involving patients and families in decision-making is an integral part of the treatment journey. Dr. Alam discussed treatment factors and proactive advice for patients. “There may be patients who are appropriate for intensive chemotherapy in terms of their fitness or age, but may be afraid of the side effects that that could entail, and it may be appropriate for them to go with a low intensity, and that’s an option for them. So I think that ultimately, my activation tip for the question is that patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.”

Solutions for Improved AML Care

Since AML is a relatively uncommon cancer, patients need to be aware that AML specialists can help carry out the latest treatments in a timely manner. Dr. Andrew Hantel shared, “And it is really important because in AML is not a disease that’s so common, so every oncologist sees patients with AML very frequently, and that kind of creates a difference between patients, people who are specialists, who are at the larger academic centers and people who are on the community and their need to really work together.”

Even with some significant barriers in AML care, solutions are underway to overcome barriers. The complexity and intensity of AML treatment options create significant barriers to care for some patients, especially those who live in rural areas. Dr. Hantel discussed how patients in rural areas often face the double barrier of less access to specialized AML care that’s updated on the latest treatments and financial issues to access care. Dr. Hantel shared some solutions that are helping to overcome barriers to optimal AML care. “By really trying to enhance some local capacities such as through telemedicine consultations, kind of working in what we consider like a hub and spoke system where they have local providers reaching out to them and patients coming to them, at the time point of treatment decisions and then going back locally for a lot of their care, just so it’s not as burdensome in terms of travel, and then there’s also a lot of programs that are both within medical systems and outside of medical systems that are being helpful for patients, for financial guidance and assistance, such as through Leukemia & Lymphoma Society, which has wonderful programs, as well as kind of identifying partners for travel and housing grants and stipends that might be needed for caregivers.”

Artificial intelligence (AI) has been touted by many as a solution to overcome disparities and biases in cancer care. However, Dr. Hantel explains how the most essential piece of overcoming clinical trial disparities is to have diverse representation in trials. “So I think there’s a number of different biases that can come into artificial intelligence models. And it’s the same, a lot of the same biases that we have in our current clinical trials, and that historically marginalized groups have not been well-represented, either in participating in trials or in their data that’s input into these AI models. And for kind of the same reason, we don’t really know how generalizable the data that we have from the trials or from the AI really apply to those populations.”

[ACT]IVATED AML Program Resources

The [ACT]IVATED AML program series leads a three-part approach to inform, empower, and engage both the overall AML community and patient groups who experience care disparities. The series includes the following resources:

•   [ACT]IVATED Expert Interviews
•   [ACT]IVATED Resources
•   [ACT]IVATED Patient Vignettes
•   [ACT]IVATED Activity Guides

Though there are AML care disparities, patients and care partners can take action to empower themselves to help achieve optimal care. We hope you can take advantage of these essential resources to aid in your AML care for yourself or for your loved one.