The role of patient-driven education in decision-making for relapsed/refractory multiple myeloma.
Authors: Hydren Jay R , Flores Pérez Patricia Alejandra , Hurtado Martínez Jorge Arturo , Franco Hernandez Eduardo , Flores Quiroz Felipe , Orlowski Robert Z. , Strain Julie , Iadeluca Laura L. , Solomon Rachel , Delwart Virginie , Chmielewski Cynthia , Ahlstrom Jennifer M. 
Published: June 2024

e19532

Background: This study examines decision-making resources and outcomes among patients with relapsed/refractory multiple myeloma (RRMM). The study aimed to identify shifts in resource utilization over time and evaluate the relationships of these with patient education outcomes. Methods: Using HealthTree Cure Hub, a retrospective cross-sectional survey was conducted exploring the experiences of RRMM patients undergoing therapy changes. Likert scales assessed educational resource utilization frequency (1-never to 5-all the time), healthcare team explanations rating (1-very poor to 5-very good), comfort level with final treatment decision (1-very uncomfortable to 5 - very comfortable), education satisfaction (1-very dissatisfied to 5-very satisfied) and time given and used to make a treatment decision. Results: 294 RRMM were included with a mean age of 66±9, 53% were female, and 49% had a graduate level education. Of 219 demographics respondents, 91% were white. For the first change in treatment the top educational resources were: 1) doctor/medical team recommendations (91%), 2) patient advocacy myeloma websites or resources (58%), 3) Google search (40%), 4) webinars (38%), and 5) online videos with experts (37%) (%, all or almost every time). Use of an additional three educational resources increased: 1) articles in medical journals (2nd change: 2.3±1.1; > 3 changes: 3.1±1.3), 2) NCCN, ASCO, mSMART or other blood cancer society guidelines (1st change: 2.0±1.1; > 1 changes: 2.3±1.3), and 2) social media posts from myeloma experts (1st change: 2.5±1.2; > 1 change: 2.7±1.3), p < 0.05. The patients' rating of their care teams’ explanations of the treatment options was on average good (4.0±1.1) at 1st change in therapy with (95% of patients rating the explanations as acceptable or better) and this improved at > 3 changes in therapy (4.4±0.7, p < 0.05), with 100% rating these as acceptable or better. Correspondingly, patients' comfort level with their final treatment decision (4.3±0.8) was related to the care team's explanation rating (r = 0.406, p < 0.001) and overall level of treatment education satisfaction (4.0±0.8, r = 0.503, p < 0.001), but it was not related to time given (4.7±9.3 wk) or used (2.2±5.4 wk) to make the treatment decision. Conclusions: While doctor/medical team recommendations remain central, RRMM patients increasingly turn to a diverse set of educational resources as they gain more experience. This is likely driven by an effort to reach a comfortable treatment decision and to obtain a satisfactory disease and treatment education level. Patients' utilization of patient advocacy websites, medical journals, society guidelines, and social media expert posts indicates a broadening of resources used to build an information base. Acknowledging this evolving paradigm is vital for understanding viable avenues for patient engagement to enhance treatment choice and decision making.