Myeloma Patients Perception of MRD Testing - HealthTree for Multiple Myeloma
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ASH 2023: What Do Myeloma Patients Think About MRD Testing?

Posted: Dec 13, 2023
ASH 2023: What Do Myeloma Patients Think About MRD Testing? image

Minimal residual disease (MRD) testing is often a controversial topic in myeloma among specialists and is a test that not all patients are familiar with.  

Because MRD testing can detect residual myeloma cells and has the potential to predict favorable outcomes, it can be a powerful tool for myeloma patients. However, many clinicians debate its value and how it can be used, therefore making its use inconsistent in myeloma practices. 

And because not all patients are familiar with MRD testing, they may not have conversations about it or ask their doctor to order it.

At the recent American Society of Hematology (ASH) meeting, Senior Research Director Jay Hydren, PhD from the HealthTree Foundation, presented research on patient perceptions of minimal residual disease testing. 

Myeloma patient’ perception and understanding of MRD testing impact their awareness to request it and utilize the results in their disease management. 

Study Methods 

HealthTree utilized HealthTree Cure Hub, its online patient portal, to conduct a 10-question survey investigating the awareness, use, and opinions of MRD testing among myeloma patients.  

Study Results

  • 635 patients from HealthTree Cure Hub  participated in the survey within a 30-day timeframe
  • 486 of these patients (83%) were diagnosed with myeloma, and 60% of those patients reported being in remission
  • Medical records for 289 of those patients were validated, allowing a comparison between patients confirmed to have had MRD testing and those who have yet to use the test.  

Study Outcomes

  • From the sample of MRD-tested patients (114), 81% correctly identified they had received an MRD test, while 19% did not know they had an MRD test.
  • Of the patients who claimed not to have been MRD tested (177), 60% correctly reported they never had an MRD test, but 40% incorrectly reported they had received an MRD test or were unsure. This group also reported being slightly or not familiar with the test. 

These results confirmed that patients who have received MRD testing are more familiar with the test. That familiarity also has a higher impact on their confidence, decision-making, and ability to plan for the future, than on getting off treatment and saving money, as you can see from the results below: 

  • Increasing confidence (81%)
  • Making decisions about therapy (73%)
  • Planning their future (52%)
  • Getting off treatment (24%)
  • Saving money (24%)

The majority (99%) of MRD tested patients familiar with the test found it to be useful, and would recommend it to others (90%). 

Top sources of information about MRD   

MRD Tested Patients

MRD not tested Patients

Dr. and healthcare team (63%)  

Personal research (67%)

Personal research (46%) 

Advocacy Groups (HealthTre, MMRFF) (35%)

100% of patients unfamiliar with the test reported they were interested in learning more about MRD.

This survey also identified the top two sources of information these patients cited for learning about myeloma:

  1. Doctor and healthcare team (89%)
  2. Patient Support/Advocacy Groups (ex. HealthTree, MMRF)/online community (78%)

Conclusions

This survey identified a lack of MRD testing and knowledge of MRD status among myeloma patients. More than half of the patients surveyed lacked knowledge and understanding of the test or its usage for them. This confirms the need for increased awareness and understanding of MRD for all myeloma patients.  

Suggestions

To learn more about minimal residual disease, access the educational resources below: 

This study underscores the importance of being educated and the impact it can have on the myeloma treatment course. 

If you are considering MRD testing, ask your doctor if it’s right for you.

ASH 2023 Resources

Would you like to watch ASH 2023 myeloma research interviews from the investigators themselves? Click "ASH 2023" here: HealthTree University Conference Coverage

To read other ASH 2023 articles, click here: HealthTree 2023 ASH Articles 

Minimal residual disease (MRD) testing is often a controversial topic in myeloma among specialists and is a test that not all patients are familiar with.  

Because MRD testing can detect residual myeloma cells and has the potential to predict favorable outcomes, it can be a powerful tool for myeloma patients. However, many clinicians debate its value and how it can be used, therefore making its use inconsistent in myeloma practices. 

And because not all patients are familiar with MRD testing, they may not have conversations about it or ask their doctor to order it.

At the recent American Society of Hematology (ASH) meeting, Senior Research Director Jay Hydren, PhD from the HealthTree Foundation, presented research on patient perceptions of minimal residual disease testing. 

Myeloma patient’ perception and understanding of MRD testing impact their awareness to request it and utilize the results in their disease management. 

Study Methods 

HealthTree utilized HealthTree Cure Hub, its online patient portal, to conduct a 10-question survey investigating the awareness, use, and opinions of MRD testing among myeloma patients.  

Study Results

  • 635 patients from HealthTree Cure Hub  participated in the survey within a 30-day timeframe
  • 486 of these patients (83%) were diagnosed with myeloma, and 60% of those patients reported being in remission
  • Medical records for 289 of those patients were validated, allowing a comparison between patients confirmed to have had MRD testing and those who have yet to use the test.  

Study Outcomes

  • From the sample of MRD-tested patients (114), 81% correctly identified they had received an MRD test, while 19% did not know they had an MRD test.
  • Of the patients who claimed not to have been MRD tested (177), 60% correctly reported they never had an MRD test, but 40% incorrectly reported they had received an MRD test or were unsure. This group also reported being slightly or not familiar with the test. 

These results confirmed that patients who have received MRD testing are more familiar with the test. That familiarity also has a higher impact on their confidence, decision-making, and ability to plan for the future, than on getting off treatment and saving money, as you can see from the results below: 

  • Increasing confidence (81%)
  • Making decisions about therapy (73%)
  • Planning their future (52%)
  • Getting off treatment (24%)
  • Saving money (24%)

The majority (99%) of MRD tested patients familiar with the test found it to be useful, and would recommend it to others (90%). 

Top sources of information about MRD   

MRD Tested Patients

MRD not tested Patients

Dr. and healthcare team (63%)  

Personal research (67%)

Personal research (46%) 

Advocacy Groups (HealthTre, MMRFF) (35%)

100% of patients unfamiliar with the test reported they were interested in learning more about MRD.

This survey also identified the top two sources of information these patients cited for learning about myeloma:

  1. Doctor and healthcare team (89%)
  2. Patient Support/Advocacy Groups (ex. HealthTree, MMRF)/online community (78%)

Conclusions

This survey identified a lack of MRD testing and knowledge of MRD status among myeloma patients. More than half of the patients surveyed lacked knowledge and understanding of the test or its usage for them. This confirms the need for increased awareness and understanding of MRD for all myeloma patients.  

Suggestions

To learn more about minimal residual disease, access the educational resources below: 

This study underscores the importance of being educated and the impact it can have on the myeloma treatment course. 

If you are considering MRD testing, ask your doctor if it’s right for you.

ASH 2023 Resources

Would you like to watch ASH 2023 myeloma research interviews from the investigators themselves? Click "ASH 2023" here: HealthTree University Conference Coverage

To read other ASH 2023 articles, click here: HealthTree 2023 ASH Articles 

The author Rozalynn Hite

about the author
Rozalynn Hite

Rozalynn Hite is the HealthTree Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children. She is passionate about providing support, education, and resources to help others live full and active lives.  

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