What Are the Top Myeloma Patient Concerns at and Since Diagnosis?

BACKGROUND: Learning about a new diagnosis, such as multiple myeloma (MM), is an important step of the disease journey. However, the education process one-on-one support from an MM patient or an experienced caregiver). Indeed, recent studies suggest that too much information can be confusing, frustrating, and negatively impact the difficult cancer treatment decision-making process. Therefore, the primary purpose of this survey was to capture the common questions and concerns of SMM and MM patients at and since diagnosis. A secondary purpose was to identify areas a Myeloma Coach may help patients with MM.

METHODS: Utilizing HealthTree® Cure Hub, a comprehensive personal health management platform designed for chronic illnesses, participants were recruited to take an online survey consisting of 18 questions. Participants were asked to select concerns they experienced at and since diagnosis, as well as concerns that they felt a HealthTree Myeloma Coach could provide valuable insight for.

RESULTS: Of the 419 myeloma patients responded 76% had MM and 23% had SMM. Of MM patients 66% were diagnosed before 2020, 77% saw a specialist, 66±8 years, 57% female, 55% retired, 26% reported currently working, and 72% had health insurance. While, 77% of SMM were diagnosed before 2020, 79% saw a specialist, 65±8 years, 61% female, 46% retired, 38% reported currently working, and 76% had health insurance. The top 5 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? However, since diagnosis the top 5 concerns changed. Importantly, the top new concern for both groups was, Is a clinical trial right for me?, and both groups added the questions: What side effects would I experience? and What can I do to prevent further spread of the disease? The two groups did differ, the SMM added one additional question: How do I deal with anxiety? Interestingly, the concerns specifically patients felt could be addressed by a Myeloma Coach were different: nutrition and exercise, working and living with myeloma, clinical trials, help with a specific treatment, help with HealthTree resources and retirement with myeloma. Additionally, the SMM group had a slight difference with financial help entering as a top concern. Lastly, of the 48 patients who have spoken with a coach 96% found the experience somewhat or very helpful.

CONCLUSION: These results identified the major concerns of MM and SMM patients at and since diagnosis. The concerns begin with learning about treatment options, life expectancy and the disease of myeloma to questions about joining clinical trials, managing side effects and the disease as the patient becomes more experienced with managing their myeloma. Additionally, this study documents the important and helpful role of a Myeloma Coach (an individual who has MM or is a caregiver for an MM patients) in assisting patients in learning how to live with the disease, using resources about physical and mental health, disease-specific nutrition, finances, exercise recommendations, and, critical to finding a cure, information about clinical trials and novel treatment options.

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