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The Psychosocial and Financial Aspects of Treating Myelofibrosis

April 11, 2023
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Myeloproliferative neoplasms (MPNs) are a class of diseases that refer to the development of abnormal cells in the bone marrow. There are three main types of MPNs: polycythemia vera, essential thrombocythemia, and myelofibrosis. Myelofibrosis is a rare cancer affecting less than two people per 100,000 people a year. The average survival rate for patients with myelofibrosis is six years. But this varies drastically based on patients’ prognostic score, which is calculated using their blood counts, symptoms, the presence of splenomegaly, peripheral blasts, and mutations. Considering potential treatments, one’s prognostic score could also improve their survival rate.

Treating Patient’s Whole Being

Depression is common for individuals living with MPNs, affecting approximately 25 percent of all patients with cancer. Anxiety—considered a co-morbidity of MPNs—is equally as common. In fact, studies show that two-thirds of people living with cancer who have depression also have anxiety. In addition to the psychosocial aspects of this class of diseases, patients with MPNs are also vulnerable to financial toxicity

Recently, ACCCBuzz spoke with Julie Huynh-Lu, PA-C, physician assistant in the Department of Leukemia at the University of Texas MD Anderson Cancer Center, to learn more about enhancing the care for patients by assessing and addressing their psychosocial and financial health.

ACCCBuzz: How do you assess patients’ psychosocial needs after a diagnosis of myelofibrosis?

Huynh-Lu: When a patient checks in for their appointment with their leukemia physician, they are provided a patient needs screening” tool that is completed at each visit. The screening tool helps us identify any problems or concerns for our patients. Issues touched on by the screening tool include activities of daily living, nutrition, speech and hearing, case management, wound, ostomy, continence, psychosocial distress, concerns for abuse or neglect, and emotional health. Once the form is completed, it is reviewed by our clinical nurses, who delve a little deeper into whether the patient requires further assistance. If it is determined that the patient would benefit from our social worker meeting with them, we will call for the social worker, who will either come in person to see the patient during their visit or who will follow-up with the patient via a phone call afterward. 

ACCCBuzz: Living with myelofibrosis can be tough, how do you specifically assess for distress, anxiety, and depression among patients?

Huynh-Lu: Myelofibrosis is a progressive, chronic disease. Patients may be stable for some time, but the disease may start to change or progress, resulting in worsening symptoms, which can affect quality of life and certainly cause mental distress. One tool for assessing for distress, anxiety, or depression is utilizing the patient needs screening form. But as providers, and given that this is a chronic disease, we can develop a rapport with our patients. 

ACCCBuzz: What impact do psychosocial issues (i.e., stress, anxiety, or depression) have on patient health outcomes? That is, stress is powerful enough to disrupt immune systems, does it also influence one’s cancer or treatment?

Huynh-Lu: I think myelofibrosis is already a difficult disease to treat, given that all patients can present differently, but adding the psychosocial aspects of stress related to finances, side effects of medications, familial distress, etc., can influence how a patient feels about their treatment. 

ACCCBuzz: What resources do you provide patients to support their psychosocial needs?

Huynh-Lu: We try to address any patients’ concerns as quickly as possible. For any immediate or urgent needs, we can place same-day consultations for social work and psychiatry. If the issue is not imminent or in danger to the patient or our staff, we recommend that patients be evaluated by local psychologists or psychiatrists because they may need to be evaluated more frequently than their appointments with us for their myelofibrosis treatments. If finances are a concern, we can put the patient in touch with our financial group. If housing is an issue, our social worker can provide patients with a list of available, nearby hotels and apartments for short- or long-term leasing.

ACCCBuzz: Are there any best practices that should be followed when defining and supporting patients’ psychosocial needs?

Huynh-Lu: Our patient needs screening tool is used on all patients, but it’s only beneficial if it is reviewed. In our department, our clinical nurses review and then escalate as they see fit—whether that means social worker will be called, an advanced practice provider will discuss further with the patient, or consultation for a same-day psychiatry visit. We hope that our providers can explore any issues that arise by having continuous conversations with patients based on the information collected.

ACCCBuzz: Patients with MPNs are considered vulnerable to financial toxicity. How is this assessed and addressed?

Huynh-Lu: Financial needs are also assessed through our patient needs screening tool. If any issues are identified regarding financial needs, we (as providers) help to find ways to fill the gap for patients. We all know medications to treat myelofibrosis are not cheap. And given that this patient population tends to be older with Medicare coverage, medication costs can be exorbitant. Finding grants and foundational support are one of the ways we can support patients. Another is utilizing payment programs offered through pharmaceutical companies. A co-pay assistance program can also be helpful for patients to cover their out-of-pocket costs. In addition, we have financial counselors that can work with patients and speak with their health insurer to look for ways to reduce costs. 

ACCCBuzz: Is there anything else you would like to add?

Huynh-Lu: I want to note the importance of having family or friends as a support system in place. Most patients with myelofibrosis tend to be older, so having someone at their appointments can be helpful because discussions between providers and patients may not be clear or patients may have questions. I recommend that patients bring someone with them to their visits or, at least, have someone available on the phone to help have a collaborative discussion on their treatment goals.

The ACCC Advancements in Treating Patients with Myelofibrosis and Strategies to Improve Care education program is supported by Abbvie and GSK.

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