A patient's journey with multiple myeloma can be confusing and overwhelming, but a new study by HealthTree Foundation for Multiple Myeloma is helping to shed some light on the most important questions and concerns of those with the disease, both at initial diagnosis and later on in their treatment journey.
To help people with myeloma better deal with their disease, it is important to understand their questions and concerns. At the 64th Annual Meeting of the American Society of Hematology (ASH 2022), HealthTree Foundation gave a report on this subject. We did a survey to find out what questions and worries both new and long-term patients with smoldering and active myeloma have. The participants of the study were as follows:
Doctors and nurses can help myeloma patients feel less confused and frustrated if they know what questions and worries are bothering their patients. The study found that the top 5 questions that participants had at diagnosis were:
Figure 1. Concerns and Questions at Diagnosis
Since diagnosis, 3 of the top 5 concerns have changed to:
(Figure 2. Concerns and Questions Since Diagnosis)
People with myeloma may benefit from working with a Myeloma Coach because they are able to get answers to their unique set of questions and concerns as they navigate the course of their condition.
The survey findings indicate that a Myeloma Coach may aid patients in making educated choices regarding myeloma by providing them with individualized resources and guidance. Additionally, the majority of participants (53%) were open to communicating with a Myeloma Coach, and 96% of the ones that talked with a Coach felt the experience to be very helpful. helpful. showing particular interest in the following topics:
Figure 3. Top goals of participants willing to talk with a coach
HealthTree Foundation's study showed that by providing targeted information and support on topics such as treatment options, treatment expectations, clinical trials and life expectancy, healthcare professionals could help reduce confusion and frustration for myeloma patients. On that note, the Myeloma Coach program showed great success in helping patients with specific worries and questions as they went through their disease journey.
Jennifer M. Ahlstrom, Nathan W. Sweeney, David F. Barton, Jorge Arturo Hurtado Hurtado Martinez, Jay R. Hydren; What Are the Top Myeloma Patient Concerns at and Since Diagnosis?. Blood 2022; 140 (Supplement 1): 13105.
about the author
Arturo Hurtado is an International Medical Graduate who Joined HealthTree in 2020 as part of The Patient Experience team. He helps patients understand their disease panorama and navigate their myeloma through the tools and resources that HealthTree provides. He is an enthusiastic photographer, tech nerd, and aspiring food explorer who loves to travel and find new exciting experiences.