Imagine that you haven’t been feeling well for the past few weeks. You’ve been tired. Short of breath. More prone to infections and fevers. Your muscles are sore, and you’ve been bruising more easily.
You visit your primary care provider or make the trip to urgent care, but the doctors and nurses there aren’t sure what’s wrong. They decide to take a blood test to learn more.
In a few hours, you get a call back with some distressing news. The results of the blood test show that you most likely have acute leukemia, and you should immediately report to the hospital for treatment.
That treatment, by the way, is an intense course of chemotherapy that will require four to six weeks of hospitalization to address the side effects, which can range from the unpleasant (nausea) to the painful (sores) to the life-threatening (sepsis).
It sounds like something out of a nightmare.
Unfortunately, this is the all too real scenario many patients experience after an acute myeloid leukemia (AML) diagnosis.
While the condition is treatable, the seriousness of the diagnosis and the intensity of the treatment can be so traumatic that some AML patients have compared it to being abducted. Many develop severe psychological distress as a result, adding yet another layer of trauma to their ordeal.
Palliative care—a practice of medicine that designed to enhance the patient’s quality of life (QOL) while undergoing treatment for serious illness—has proven effective in alleviating distress in AML patients. But there are not enough palliative care physicians to go around.
Could an app help with that?
Areej El-Jawahri, MD
That’s the question being investigated by a team of clinicians and researchers led by Areej El-Jawahri, MD, associate director of the Cancer Outcomes Research and Education Program and Director of the Bone Marrow Transplant Survivorship Program at the Mass General Cancer Center.
El-Jawahri recently collaborated with the team in the Healthcare Transformation Laboratory at Mass General to develop DreAMLand, an iPad-based app that uses an engaging game-like format to provide palliative care information and services for AML patients.
The app is designed to teach patients about their diagnosis, guide them through the different stages of treatment and provide them with techniques to manage stress.
“We know there is not going to be enough palliative care, mental health and supportive care clinicians to meet the needs of all patients with serious illness,” El-Jawahri explains. “So we’ve taken the active components of a palliative care intervention and translated it into a psychosocial mobile app.”
About Acute Myeloid Leukemia
Acute myeloid leukemia (AML)—the most common type of leukemia in adults—is a disease of the bone marrow that results in the production of abnormal myeloid cells (the starter cells that develop into red blood cells, white blood cells or platelets).
Normally, the myeloid cell’s DNA contains instructions that tell the cell to grow at a set rate and die at a set time—this helps to keep the population of myeloid cells manageable in the body. In AML, however, genetic mutations tell the myeloid cells to keep growing and dividing without dying off, resulting in an overwhelming number of abnormal cells that clog up blood vessels and prevent healthy cells and oxygen from reaching tissues.
Symptoms are typically mild to start and include fatigue, breathlessness, fevers, excessive sweating and weight loss, among others. Diagnosis typically comes via blood test, and treatment normally starts within a few days due to the rapid progression of symptoms if the disease is untreated.
The side effects caused by the intensive regimen of chemotherapy that follows-- bleeding, fevers, fatigue, nausea, vomiting, diarrhea and other gastrointestinal issues—are significant and contribute to feelings of helplessness and distress.
El-Jawahri designed the app to support AML patients in processing and understanding this diagnosis and in managing their stress (and distress) during the tough early days of treatment. “A lot of what palliative care does is really manage the patient's expectations about what will happen,” El-Jawahri explains.
“We know these treatments are going to make you feel ill and it's okay that you are feeling ill. We're going to try to make those symptoms better as best as we can. And at the same time you don't need to worry about dying because I will tell you if you are dying.”
“So being able to manage patient's expectations—reducing that trauma effectively when patients know what to expect—makes it easier to deal with the uncertainty of this illness.”
Piloting the DreAMLand App and Next Steps
El-Jawahri and colleagues recently conducted a pilot clinical trial to evaluate the feasibility of the DreAMLand app in AML patients.
Overall, 60 of 90 eligible patients enrolled in the study and 18 of 29 completed 75% of the modules, meeting the study’s primary endpoints for enrollment, uptake and completion.
“Notably, use of DreAMLand led to a significant improvement in quality of life and anxiety and depression symptoms, as well as symptom burden and self-efficacy during hospitalization,” the researchers wrote.
Those results now need to be duplicated in larger multisite trials, with the ultimate goal of seeking FDA approval of the app so it can be prescribed to AML patients as part of their medical care.
About the Mass General Research Institute
Research at Massachusetts General Hospital is interwoven through more than 30 different departments, centers and institutes. Our research includes fundamental, lab-based science; clinical trials to test new drugs, devices and diagnostic tools; and community and population-based research to improve health outcomes across populations and eliminate disparities in care.
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