Multiple Myeloma Patients Find Clear Clinical and Emotional Benefit from MRD Testing. So How Do We Increase Awareness?

March 9, 2023

A new survey from HealthTree Foundation and Adaptive Biotechnologies shows that patients with multiple myeloma report significant clinical and emotional benefits from MRD testing and 90% of patients who have had MRD testing would recommend it to others, underscoring its benefits and providing support for broad clinical use.

Each year, more than 30,000 Americans are diagnosed with multiple myeloma, a rare blood cancer.1 Multiple myeloma begins with one abnormal plasma cell in the bone marrow – the soft, blood-producing tissue that fills most bones – which then multiplies rapidly. Because cancer cells do not mature and then expire like normal cells, they accumulate and overwhelm the production of healthy cells.2 This process can lead to a variety of unpredictable symptoms – such as bone pain, nausea, and fatigue – meaning that some patients can have the disease without initial symptoms, while others experience them at a rapid onset.

Determining a patient’s minimal residual disease (MRD) status – the number of cancer cells that remain before, during and after cancer treatment – can provide meaningful benefits and information to patients and their providers.

A new survey conducted by HealthTree Foundation, an organization providing disease navigation tools for patients while accelerating treatment research, and supported by Adaptive Biotechnologies, indicates that patients with multiple myeloma experience both clinical and emotional benefits when they receive MRD testing. The consistently positive sentiments reported by MRD-tested patients strengthen the case for continued efforts to expand awareness of MRD testing among patients, their health care providers, and advocates.

The Importance of MRD Testing

MRD testing can be conducted serially throughout a patient’s treatment journey and is used in clinical practice to arm health care providers with data necessary to inform disease status, progression, and recurrence. This information can facilitate physician-patient dialogue, supporting real-time clinical management and the development of personalized treatment plans. It can also equip patients with additional knowledge as they face the often uncertain and frightening nature of a multiple myeloma diagnosis.

“MRD testing delivers precise, real-time insights on the effectiveness of treatment, offering a dynamic picture of how a patient’s risk of progression is evolving. Testing is widely available and covered by Medicare and most major health plans nationally – an essential factor in striving for health equity,” said Susan Bobulsky, senior vice president, Diagnostics, Adaptive Biotechnologies, a company which offers the first and only FDA-cleared MRD test. “Data continue to mount demonstrating that MRD results can play an important role in some of the most challenging decisions clinicians and patients must jointly make on a daily basis, such as whether and when to change or stop treatment."

Current Understanding and Use of MRD Testing

In the survey, 635 patients living with multiple myeloma across the U.S. were asked questions gauging their current levels of awareness, use, and feelings towards MRD testing.

For patients who had MRD testing, their experiences were overwhelmingly positive:

  • 96% of these respondents found the test useful and 60% found it extremely useful.
  • 78% of patients who were confirmed to have used MRD testing say the results helped inform their provider’s treatment decisions.
  • 81% of respondents stated that MRD testing brought them comfort in their treatment journey by keeping them consistently informed.
  • More than 90% of respondents who have received MRD testing would recommend it to other patients, further demonstrating its acceptance and potential for wider adoption.

“As the survey highlights, MRD testing offers extensive benefits. Its ability to precisely monitor disease status can help predict outcomes, inform disease management, and empower patients to better understand their disease or remission status,” said Jenny Ahlstrom, multiple myeloma patient and founder of HealthTree Foundation. “It is our responsibility as advocates to educate multiple myeloma patients on tests that are available to them to help guide their potential treatments and care, enabling them to take better control of their health.”

Generating Greater Awareness

Survey findings showcase the potential value of continued growth in advocacy efforts around MRD testing, especially due to the high levels of reported clinical and emotional benefits.

Of the respondents, 53% reported not having had MRD testing or were unsure if they had testing, underscoring the opportunity to increase education.This need appears to be well-aligned with patient interests, as 99% of those who had not received MRD testing reported being interested in learning more about the process.

“The various reported benefits of MRD testing, in conjunction with patients’ desire for more information, drives the need for greater awareness and educational initiatives,” said Ahlstrom. “Healthcare providers and blood cancer patients alike must be educated and encouraged to have an ongoing, open dialogue around diagnosis and treatment planning with an understanding of how MRD can guide these decisions.”

Of those surveyed who are familiar with MRD testing, 41% learned about the test from their doctors while 59% learned about it from their own research, suggesting that healthcare providers are not consistently delivering education on this topic to patients. Among respondents with validated medical records indicating they had received MRD testing, 14% did not know or were unsure if they had it, further illuminating a disconnect in patient-provider communication.

“Multiple myeloma care is constantly advancing, and the success of new testing methods and treatment relies on increasing patient and provider awareness,” said Ahlstrom. “By learning from real-world patient experiences with MRD testing, we can better understand the various benefits of MRD testing and ensure patients are empowered to be educated and are supported to get the care they need.”

For more information about the uses and benefits of MRD testing, visit www.healthtree.org/myeloma or clonoSEQ.com.

References

  1. https://www.cancer.org/cancer/multiple-myeloma/about/key-statistics.html
  2. https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378