AML specialist Dr. El-Jawahri from the Massachusetts General Hospital shared holistic care strategies to help AML patients and their caregivers cope with the mental and physical difficulties of AML. Watch her full presentation below along with summaries of key discussion points. 

Coping with AML: Strategies to Improve Physical and Mental Wellbeing

Key Points Summary

AML Diagnosis and its Impact

• An acute myeloid leukemia (AML) diagnosis is often abrupt and can lead to sudden, extended hospitalizations
• The unexpected nature of the diagnosis often results in patients feeling emotional distress, feelings of isolation, and a loss of independence
• Many AML patients suffer from post-traumatic stress, depression, and anxiety
• The traumatic experience can have long-term implications on their mental health, quality of life, and survival rates

Role of Palliative Care

• Adding a palliative care professional to an AML patient's care team at the beginning of treatment is very beneficial in helping enhance quality of life and reducing distress 
• A study involving 160 AML patients demonstrated the benefits of integrating palliative care at the beginning of an AML patient's treatment course showing it improved quality of life, reduced anxiety, depression, and PTSD symptoms for the patients 

Dreamland App

• Because of the limited number of palliative care professionals, to help integrate palliative care strategies the app Dreamland was developed (it is currently in clinical trials to get FDA approved). It uses digital intervention to guide AML patients through their hospitalization
• Features include cognitive behavior therapy, gamification, patient videos, mindfulness techniques, and a structured roadmap of where the patient is at in their stage of treatment and what to expect next 
• Usage data suggests high engagement and positive outcomes in improving quality of life and reducing anxiety and depression for AML patients 
• A caregiver-focused version is in development

Tips and Support for Patients and Caregivers

• Educating oneself about AML is important. It helps patients feel more in control about what is happening to them and what to expect. Patients and their caregivers need to be careful about the sources they are getting their information and only look to use credible sources
• AML patients should create a list of needs they have that caregivers can help fulfill. Their list should include short-term and long-term needs. Often family and friends that want to help a patient may focus on only providing food at the beginning of the diagnosis. Patients should advocate for their needs in other tasks apart from meal preparation like paying bills, travel, etc. 
• Patients should prepare in advance as able the questions they want to ask their AML specialist. If patients have sensitive topic questions such as prognosis of life expectancy, they need to be direct in their questions to have productive conversations with their healthcare provider

Future Research and Directions

• Training more healthcare providers in palliative care is essential to help meet the needs of AML patients 
• Scaling and disseminating successful interventions, like the "Dreamland" app, is crucial
• Ongoing studies aim to compare different palliative care models and assess long-term benefits of interventions
• Feedback from patients and caregivers can offer essential insights into improving care
• Peer support, such as through the AML coach program, is valuable for AML patients

Want to Learn More About Important AML Topics?

Join the Adult AML Chapter!