Age-related differences in information-seeking behaviors of patients with multiple myeloma.
Authors: Ahlstrom Jennifer M. , Cuevas Vicencio Andrea Jimena , Flores Quiroz Felipe , Hurtado Martínez Jorge Arturo , Flores Pérez Patricia Alejandra , Orlowski Robert Z. , Strain Julie , Iadeluca Laura L. , Solomon Rachel , Delwart Virginie , Jensen Rachel M. , Chmielewski Cynthia , Hydren Jay R 
Published: June 2024

e19523

Background: For patients with relapsed refractory multiple myeloma (RRMM), obtaining essential disease information for effective self-advocacy and decision-making is challenging, exacerbated by age-related educational barriers and issues related to cultural resources. This study evaluated age-related preferences of patient education resource utilization in RRMM patients. Methods: This survey was conducted on HealthTree Cure Hub, a patient-driven platform designed to efficiently share clinical insights from myeloma specialists, help patients navigate their disease, and contribute to research. The analysis focuses on evaluating the use of 16 different resources and age-related differences among patients with RRMM. Scales included: 1-to-5 for usage (1 - never, 2 - almost never, 3 - occasionally/sometimes, 4 - almost every time, 5 - every time) and 1-to-6 for education (some high school to a graduate degree). Results: Of the 688 participants, 289 had available birth dates and were included in the analysis. The <65 cohort (Y) was 57±6 years old (yo), and the ≥ 65 cohort was 71±5 yo at the time of the survey. The ≥65 cohort (O) was more educated (O: 5.2±1.0; Y: 4.8±1.3, p<0.05), increased their utilization of webinars with time (1st change: 3.1±1.2; > 1 changes: 3.4±1.3, p<0.05) and review of NCCN, ASCO, mSMART, or other blood cancer society guidelines over time (1st change: 2.1±1.2 ; >1 changes: 2.4±1.4, p<0.05). Additionally, the older patients used pamphlets (printed or PDF) created by pharmaceutical companies more than younger patients (O: 2.4±1.1; Y: 2.1±1.2, p<0.05), however, this difference decreased for >1 changes in therapy (Y: 2.1±1.2; O: 2.2±1.2, p>0.05). The older patients utilized social media (non-myeloma expert posts) less at >1 changes in therapy (O: 1.5±0.8; Y: 2.0±1.0, p<0.05), with 69% (n = 69) of the older cohort reported never using this resource, while only 44% (n = 18) of the younger patients reported never using it. The <65 cohort consulted family members, friends or loved ones more than the ≥65 cohort for >1 changes in therapy (Y: 2.5±1.5; O: 1.9±1.1, p<0.05). In addition, the younger patients increased the utilization of medical journal articles with subsequent changes in therapy (2.8±1.2 to 3.0±1.2, p<0.05). Conclusions: The survey revealed that older patients increasingly engaged in webinars and consulted cancer society guidelines with subsequent changes in therapy. While younger patients increased their use of medical journals and more often consulted with their family, friends and loved ones. Both groups demonstrated a wide range of resources (16) used to build their knowledge of myeloma. These findings indicate a desire among patients to comprehend their disease, utilizing diverse resources for information and gaining more knowledge over time.