Assessing Racial and Ethnic Disparities and Outcomes in Myelofibrosis

The Chicagoland study presented at the 66th American Society of Hematology conference analyzed the factors that influence myelofibrosis outcomes, including disease characteristics, access to standard therapies, the rate of bone marrow transplants, and complication rates. The goal of this study was to better understand how different factors contribute to differences in patient survival and treatment responses.

Myelofibrosis is a type of blood cancer that belongs to a group of disorders known as myeloproliferative neoplasms. It can occur on its own, known as primary myelofibrosis, or develop from other conditions such as polycythemia vera or essential thrombocythemia, which is called secondary myelofibrosis. 

Study Overview

The study included 496 adult patients diagnosed with myelofibrosis at five medical centers in the Chicago area. The median age for all patients was 66 years old, with some variation among racial and ethnic groups. 

Patients were divided into groups based on their racial and ethnic backgrounds:

• 352 were non-Hispanic White
• 83 were non-Hispanic Black
• 29 were Hispanic
• 32 identified with other racial or ethnic groups

Chicagoland Study Findings

Among non-Hispanic White patients, 64% had primary myelofibrosis, while 36% had secondary myelofibrosis. In contrast, non-Hispanic Black and Hispanic patients had higher rates of primary myelofibrosis at 80%.

Genetic testing showed that 70% of patients had a JAK2 mutation, 18% had a CALR mutation, and 5% had an MPL mutation, with no significant differences between racial and ethnic groups.

Prognostic Risk Scores

The risk-scoring systems help researchers and doctors assess the severity of myelofibrosis and predict patient outcomes. For this study, two major scoring systems were used:

• DIPSS+ (Dynamic International Prognostic Scoring System Plus): 16% of patients had low-risk disease, 30% had intermediate-1 risk, 42% had intermediate-2 risk, and 12% had high-risk disease.
• MIPSS70+ Version 2.0 (Mutation-Enhanced Prognostic Scoring System): 5% had very low risk, 29% had low risk, 25% had intermediate risk, 32% had high risk, and 9% had very high risk. There were no significant differences in risk levels across racial and ethnic groups.

Read more about myelofibrosis scoring systems and how myelofibrosis is staged and classified by clicking the button below. 

LEARN MORE ABOUT MYELOFIBROSIS RISK

Access to Treatment and Bone Marrow Transplants

Overall, 54% of patients received treatment with JAK inhibitors, a standard therapy for myelofibrosis. However, use of JAK inhibitors was lower among non-Hispanic Black patients (37%) compared to more than 50% of non-Hispanic White and Hispanic patients.

Bone marrow transplant remains the only potentially curative treatment. In this study, 23% of non-Hispanic White patients received a bone marrow transplant. However, only 12% of non-Hispanic Black patients and 14% of Hispanic patients underwent transplantation.

Analyzing the treatment decisions between groups is crucial for understanding further results and ensuring all patients receive the most convenient treatment for them. 

Interviewing the Researcher and Presenter of the Chicagoland Study

HealthTree interviewed Dr. Anand Patel, who shared insights for patients and highlights of this study’s findings. 

Are Any Racial or Ethnic Groups at Risk of Experiencing More Side Effects?

Among all patients, vascular side effects and disease progression were the most common. Progression to advanced disease didn’t have significant differences between racial and ethnic groups.

• Venous blood clots: occurred in 21% of non-Hispanic White patients, 29% of non-Hispanic Black patients, and 7% of Hispanic patients.
• Arterial blood clots: were observed in 18% of non-Hispanic White patients, 16% of non-Hispanic Black patients, and 14% of Hispanic patients.

Did Overall Survival Rate Change Among Groups?  

The median overall survival was 7.69 years for non-Hispanic White patients, 9.48 years for Hispanic patients, and was not yet reached for non-Hispanic Black patients.

Notoriously, non-Hispanic Black patients had a 44% greater risk of death. Hispanic patients had a 14% lower risk. This awakens more questions for further research on risk factors based on ethnicity and race that could help people reduce the risk of death. 

What’s Next?

Future research will examine additional factors, such as insurance type and socioeconomic status, to better understand these disparities. These insights may help improve treatment access and outcomes for all patients with myelofibrosis.

This study highlights key differences in myelofibrosis outcomes based on racial and ethnic backgrounds and opens the conversation of equality for all patients so they achieve similar overall survival rates by providing personalized therapies that will ensure better outcomes.

What This Means for Patients

For patients, understanding the risk and genetic factors linked to race and ethnicity can be crucial to receiving specialized care, for example, Black patients are likely to have higher risk myelofibrosis, which requires close monitoring, and depending on individual characteristics a more intense therapy regimen. For Hispanic and Black patients, who have lower rates of transplant, asking your healthcare team all of your questions and concerns and raising awareness of the barriers that arise to access transplant, can be a way to self-advocate to ensure all patients have the same access to the treatments they need. 

If you or a loved one has been diagnosed with myelofibrosis, it is important to self-advocate and discuss your treatment options with your healthcare team with a personalized approach. If you face barriers to receiving treatment, consider seeking a second opinion or connecting with patient advocacy groups for support.

You can find a specialist with HealthTree in case you are looking for a myelofibrosis specialist or a second opinion. 

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Source: 

• Assessing Disparities in a Chicagoland Cohort of Patients with Myelofibrosis