Coordination of Care in Myeloma
Myeloma Today in conversation with Beth Faiman and Charise Gleason
Beth and Charise, you deliver care to patients at two large institutions with specialized myeloma programs and a team approach to patient care. Please tell us about the coordination of care between your centers, local community doctors, and the myeloma patients you serve.
Beth Faiman: Some of the myeloma patients in our practice begin their journey with us from the time of diagnosis. Others are referred by their community doctors when they are newly diagnosed or after relapse. We also see patients who are “self referred” and come to us on their own. Our institution can offer the newer therapies and supportive care measures that may not be available at smaller clinics. Our myeloma team holds weekly meetings, and our regional colleagues are invited to present difficult cases for discussion.
Charise Gleason: Yes, that describes the work of myeloma teams at many major institutions. A myeloma patient may receive care from a different practice before or after they come to us, so our approach to patient care extends beyond the program at our center. We often partner with doctors who care for myeloma patients locally; we work together to achieve an optimal outcome for the patient. If there is a need for a transition of care for the patient, it should be seamless.
BF: The three phases of a patient’s journey are (1) before treatment, (2) during treatment, and (3) after treatment. A patient may come to our institution for a diagnosis or for a stem cell transplant, a bispecific antibody, or chimeric antigen receptor (CAR) T-cell therapy. CAR-T is available only at a limited number of clinics; it may not be available to the patient locally. The transition of care occurs when they are sent to us for treatment by their local team.
CG: After a period of post-treatment monitoring, when our myeloma team determines that a patient is ready, we transition them back to their local doctor. Our relationship with a patient does not end; the two-way communication continues. We keep an eye on their care. We want to know how the treatment is working or if there are side effects. Best practices are modeled by national guidelines, but we also take an individualized approach to each person.
BF: We build relationships both with the patient and with their local healthcare team. Side effects can be tricky with the newer therapies like bispecifics and CAR T-cell therapies. Not all local clinics are comfortable managing side effects that they rarely see.
CG: Before patients transition back to their local doctors, we equip them with the information they need about the maintenance strategy that’s recommended to keep them in remission. We make sure the patients know they can reach out to us at any time. We’re here for them.
BF: How often we communicate depends on several factors. If the local doctor starts to see changes in the patient’s numbers, even if it’s a biochemical relapse that doesn’t require immediate action, it’s time to discuss next steps. I always advise following up with the myeloma specialist within a year to capture any change, but the timing varies.
CG: Effective coordination of care is key, and communication is a two-way street. Patients must know how to best keep in touch – online portal, phone, fax? Patients must know who’s in charge, who’s ordering or interpreting lab tests or imaging studies, who’s monitoring medications, who’s managing side effects? The biggest barrier to successful coordination is not knowing who’s in charge at any given period.
BF: Pre-plan your next therapy while you’re in remission and feeling good and in control. You may never need that next therapy, but you will be better prepared if you take the time to consider your next options. This is also a good time to continue building a relationship of trust both with your local doctors and with the myeloma specialists.
CG: We want you to get the best care that you feel comfortable with from the team you choose to manage your care at any given time. If a patient at our center wants to go elsewhere for a second opinion or for treatment, we support their decision. Sometimes it’s a matter of their ability to travel, or they may want to verify the advice they’ve received. Regardless, the patient should feel comfortable with all aspects of their care.
BF: The IMF InfoLine is a great resource for patients to talk with someone about their myeloma. We also recommend the educational resources and videos on the IMF website, including the IMF’s Understanding-series publications. We encourage our patients to participate in myeloma support groups.
CG: We’re happy to share the care of the patient, and they should feel comfortable flowing back and forth between all the healthcare professionals on their team.
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(This article was published in the 2024 Summer Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)