Multiple Myeloma Patient Perceptions of Minimal Residual Disease Testing

Abstract

Background Minimal residual disease (MRD) testing is a valuable tool for detecting residual malignant cells in multiple myeloma (MM) patients. MRD negativity has a strong predictive power and is linked to favorable outcomes in various diseases and treatments. However, not all MM patients are aware of this testing method or whether it could be integrated into their disease management. This study aimed to evaluate the awareness and perception of MRD testing in MM patients. Methods HealthTree® Cure Hub for Multiple Myeloma, an online portal for patients with plasma cell dyscrasias, was used to conduct a 10-question survey to investigate the awareness, use, and opinions of MRD testing for MM patients. The statistical analysis was performed with R, R Studio, Knitr, and LaTex. Chi-square and T-Tests were used to evaluate if responses were different between patients confirmed to have had or not had MRD testing. Alpha was set at 0.05 with a two-tailed test. Results A total of 635 patients from HealthTree Cure Hub answered the survey from September 30th 2022 to October 31st, 2022. Of the total participants, 486 were diagnosed with MM (83%), and most of them were reported as being in remission (60%). Validated medical records were available for 289 patients allowing for a comparison between patients confirmed to have had MRD testing (MRD-tested patients) and those that have yet to use the test (MRD not tested patients). From the sample of MRD-tested patients (114 patients), 81% of patients correctly identified that they had had an MRD test, while 19% did not know they had an MRD test or were unsure. These results corresponded with the number of patients (14%) who reported being slightly or not familiar with the test. In contrast, in the MRD not tested group (177 patients), 60% of patients correctly reported they never had an MRD test, but 40% incorrectly reported they had had an MRD test or were unsure. In this latter group, 30% of patients reported being slightly or not familiar with the test. As expected, MRD-tested patients reported to be more familiar with MRD testing (5-point Likert scale: 3.8±1.2 v. 3.2±1.2, p < 0.001). In general, the test was more useful in increasing patients' confidence (81%), making decisions about the therapy (73%), and planning their future (52%), than getting off treatment (24%), and saving money (24%). Both groups had similar results. The majority of MRD-tested patients who reported being familiar with the test, found it to be useful (99%) and would recommend it (90%). The top sources of information about MRD for MRD-tested patients were the doctor and care team (63%) and their own research (46%), in contrast with the MRD not tested group, where the top source was their own research (67%) and advocacy support groups (e.g. HealthTree, MMRF) (35%). Patients that were not familiar with the test answered that they were interested in learning more about MRD (100%), similar to patients that are already familiar with the test (90%). Finally, the top two sources of information for learning about MM were the doctor/care team (89%) and patient support/advocacy groups (e.g., HealthTree, MMRF) / online community (78%). Conclusions This survey investigated MRD testing awareness, usage, and opinions among a large sample of patients with MM. More than half of the patients lacked MRD testing usage or knowledge, and 30% of the validated cohort had incorrect knowledge of their MRD status. Nevertheless, among patients familiar with MRD testing, a high proportion found it useful and would recommend it to others. Moreover, a considerable number of patients reported interest in learning more about MRD testing. These findings underscore the need for increased awareness and understanding of MRD testing among patients with MM.