Acute Myeloid Leukemia (AML) – Misconceptions About Survivability

A new study revealed that adults over 60 years diagnosed with Acute Myeloid Leukemia (AML) have substantial misperceptions regarding their treatment. They tended to overestimate their risks of dying due to treatment and the likelihood of a cure, compared to their oncologists’ estimates.

Acute Myeloid Leukemia (AML) is a cancer of the blood and bone marrow (the tissue inside the bones that produces blood cells). It is the second most common type of leukemia diagnosed in adults and children. It affects a group of white blood cells called myeloid cells which normally develop into other types of blood cells like red blood cells, white blood cells, and platelets. It is rare for the disease to occur before age 45 and the average age at the time of diagnosis is 67 years.

AML can progress very quickly if not treated and would probably be fatal in few months. Given that the prognosis and onset is rapid, adults over 60 years old, diagnosed with AML, have to make decisions regarding their treatment fairly quickly. In some cases, these decisions have to made within days. The treatment options are either a) risky, intensive chemotherapy that involves hospitalizations for four to six weeks or b) non-intensive care, given as outpatient treatment.

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 differences in perception of treatment risk and cure for patients compared with their oncologists’ were not as large in those diseases as in AML. The researchers attributed this to higher levels of distress in people with AML due to the urgency of their treatment decisions.

 

The Study:

The study had enrolled 100 older patients (average patient age being 71 years) of which 50 were receiving intensive care  and 50 were receiving non-intensive care. Within three days after starting the treatment, both patients and their oncologists were given a questionnaire to assess how they perceived their chances of dying from the treatment. A follow-up questionnaire was conducted one month later, to assess the perceptions of prognosis.

Regardless of the type of treatment they received, 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 biggest 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. For that group, 44% of patients believed they would very likely be cured, while none of their oncologists thought this was very likely.

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

What does this mean for AML patients and caregivers?

This study reveals that there are significant gaps in understanding between treatment choices, risk assessment, and outcomes. Most AML patients do not have the luxury of time to make decisions. The lack of time can cause AML patients to rush into a type of treatment without fully understanding treatment risks and prognosis. It is important for AML patients and their caregivers to fully assess the impacts of prospective treatments and its outcomes.

This also means that patients and caregivers need to not feel rushed into decision making by oncologists’. This can be across ALL age groups, and not specific to older patients. Every patient and caregiver, involved in the decision making, needs to be given the time to make decisions. For physicians and the care teams, this study reveals that there is a huge need for better communication and facilitation to help patients and caregivers understand their choices, risks, and treatment outcomes.

Sources:

https://www.curetoday.com/articles/older-adults-with-aml-dont-understand-the-risks-and-likely-outcomes-of-treatment

https://www.cancer.org/cancer/acute-myeloid-leukemia/about/what-is-aml.html

About the author

Pooja Rajani is a skilled facilitator, with expertise in raising awareness, and launching new initiatives. She has worked with companies to build campaigns from the ground up. She spent the past year helping benchmark caregiver needs. She holds an MBA from the Strome College of Business and an M.P.H. from Eastern Virginia Medical School.
2 Responses
  1. Pam Cytrynbaum

    This is entirely the fault of doctors. We are living this disease now in my family and as caregiver I am forced to demand discussions, explanations and coordinate all care. It is insane. Exhausting. Unethical. What happens to patients who don’t have a fierce, educated, aggressive advocate? 400,000 people die each year because of medical errors. It is a public health crisis. This basic, huge communication disconnect is the tip of a catastrophic iceberg.

  2. Aw, this was a really good post. Spending some time and actual effort to create a top notch article?but what can I say?I procrastinate a whole lot and never seem to get anything done. Greta Guglielmo Ursi

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