The Top Concerns at and Since Diagnosis: Standard v. High Risk Myeloma Patients

Background: Learning about a new diagnosis, such as multiple myeloma (MM), is an important step of the disease journey. However, the education process can be overwhelming especially when factoring in disease progression, predicted by risk stratification. Unfortunately, recent research documents that excessive information can be confusing, frustrating, and negatively impact cancer treatment decision-making. The primary purpose of this survey was to capture the common questions and concerns of newly diagnosed SMM and MM patients dealing and during the years since diagnosis and evaluate the potential impact of risk classification (standard v. high risk).

Methods: Using HealthTree® Cure Hub, a comprehensive platform for managing personal health for chronic illnesses, participants were recruited to take an 18 question online survey. Participants were asked to report their risk level and select the concerns experienced at and since diagnosis. A secondary aim was to identify common topics MM patients may have for a HealthTree Myeloma Coach, one-on-one mentoring help from an experienced caregiver or MM patient.

Results: Of the 419 myeloma patients who responded, 167 had standard risk and 107 were high risk. Of standard risk patients 73% had MM and 26% had SMM, 80% were diagnosed before 2020, 79% saw a specialist, mean age of 66±7 years, 45% male, 30% reported currently working, 56% retired, and 69% had health insurance. While, of the high risk patients 83% had MM and 17% had SMM, 78% were diagnosed before 2020, 81% saw a specialist, mean age of 65±9 years, 38% male, 49% retired, 35% reported currently working, and 78% had health insurance. The top 6 questions at diagnosis were identical between groups: What are the myeloma treatment options?, What is my life expectancy?, What is myeloma?, Can myeloma be treated?, What can I expect during treatment?, and What side effects would I experience? Since diagnosis 3 additional concerns entered the top 6 for standard risk and 2 for high risk, one of which was shared: Is a clinical trial right for me? The standard risk group also added: What can I do to prevent further spread of the disease?, and Does my doctor have sufficient experience? While the high risk group added: How do I deal with anxiety? Intriguingly, the common topics MM patients identified that a HealthTree Myeloma Coach can help address complemented those identified in the other questions: nutrition and exercise, clinical trials, help with a specific treatment, plus, working and living with myeloma. Of note the standard risk patients also included the topic of kidney issues and retiring with myeloma, while the high risk patients requested additional help with resources available at HealthTree and orthopedic issues.

Discussion & Conclusion: These results identified the major concerns of standard and high risk MM and SMM patients at and since diagnosis. The concerns begin with domains involving learning about treatment options, life expectancy and the disease of myeloma to concerns of how to manage side effects, while managing the disease, and, critical to finding a cure, a desire to learn more about joining clinical trials. Moreover, this study revealed additional topic areas a Myeloma Coach can address to help MM patients, who commonly achieve long and durable MM remission, remain current with novel treatments, learn more about clinical trials, and receive insight on living, working and retiring with myeloma. Critically, this study also highlights the mental challenges associated with being a high risk myeloma patient, with concerns of dealing with anxiety, becoming a prevalent concern since diagnosis. Taken together, this study highlights the importance of assisting high risk patients in learning how to live with their disease and manage their mental health and programs, like HealthTree Myeloma Coach, where someone who has experience with MM could provide key guidance, while supporting and sharing relevant resources.

Ahlstrom:Pfizer, BMS, Janssen, Takeda Oncology, Sanofi: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees.