The role of patient-driven education in decision-making for relapsed/refractory multiple myeloma.
Authors: Jay R Hydren, Patricia Alejandra Flores Pérez, Jorge Arturo Hurtado Martínez, Eduardo Franco Hernandez, Felipe Flores Quiroz, Robert Z. Orlowski, Julie Strain, Laura L. Iadeluca, Rachel Solomon, Virginie Delwart, Cynthia Chmielewski, Jennifer M. Ahlstrom
Journal: Journal of Clinical Oncology (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; &gt; 3 changes: 3.1±1.3), 2) NCCN, ASCO, mSMART or other blood cancer society guidelines (1st change: 2.0±1.1; &gt; 1 changes: 2.3±1.3), and 2) social media posts from myeloma experts (1st change: 2.5±1.2; &gt; 1 change: 2.7±1.3), p &lt; 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 &gt; 3 changes in therapy (4.4±0.7, p &lt; 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 &lt; 0.001) and overall level of treatment education satisfaction (4.0±0.8, r = 0.503, p &lt; 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.