“You have myeloma.” Hearing those words causes distress. Thanks, Captain Obvious! Now what!?
First, on an individual level, you must ask for help and advocate for the care you need. HealthTree University has a video resource that offers help on navigating myeloma with good mental health.
Second, on a myeloma community level, we need data to prove just how widespread cancer distress is, then we can advocate as a group for the resources necessary. Research presented at ASH 2022 is a step in the right direction toward this goal.
Oreofe O. Obejide, MD, MPH, and fellow investigators recognized that there has been limited research conducted on the psychological burdens of a myeloma or lymphoma diagnosis on patients. Without data to support the need, resources are not allocated, and patients are left without help. Their research (Abstract 3610) endeavored to characterize self-reported anxiety and depression in a group of adults newly diagnosed with either lymphoma or myeloma. As expected, the study found substantial psychological burden, with most patients experiencing anxiety and/or depression.
Of the 192 newly diagnosed patients studied, they found that greater than half (56.3%) experienced anxiety and/or depression. As expected, quality of life scores for those patients were also lower. Anxiety and/or depression were also most prevalent amongst those with lower social support and greater financial burden.
In a different study reported at ASH 2022 (Abstract 2313), Rushil V. Patel, MD, and fellow researchers found that “despite consensus recommendations, only 33% of distressed patients with myeloproliferative neoplasm (MPN's) were evaluated by any supportive services within six months of screening.” This was a single-center study; however, the lack of availability and utilization of mental health/supportive care services is a challenge I hear from the patients I coach around the country in both academic and community settings.
This study also did not include patients with multiple myeloma. Dr. Patel commented that he would expect similar findings for patients diagnosed with multiple myeloma and would like to do further research in other hematological diseases and cancers. He also attempted to investigate if high levels of distress were associated with increased healthcare utilization. Of the 141 patients included in the research, 53% reported significant distress, and distressed patients had more emergency department visits (15% versus 0%) and unplanned hospitalizations (16% versus 6%). Dr. Patel concluded that further research with a larger population would be helpful.
In addition, a study by Katherine W. DiNardo, MD, and colleagues looking at the mental well-being of patients and caregivers was presented at ASH this year (Abstract 3626) and concluded that in certain instances anxiety and depression was even more severe for caregivers than patients. This study suggested that caregivers could also benefit from intervention and outreach from mental health professionals.
That cancer patients and their caregivers have issues with stress, anxiety, and depression, makes logical sense, but putting data behind the logic is important. The issues are complicated. Mental health resources are limited both in the availability of personnel and funding to access it. Beyond access, compatibility and type of help is complex. Mental health services are not one-size-fits-all options. Peer support groups offer valuable stopgaps in some cases, but one-on-one counseling is required in others.
It is important to understand that you are not alone if you are having mental health stress after a multiple myeloma diagnosis for you or a loved one. This is another area where you must advocate to get help. The truth of the matter is that most patients and caregivers would benefit from mental health resources at some point during their myeloma journey, but it is rarely discussed during doctor visits and often only offered in moments of crisis. Once again, logic tells us that intervention before a crisis arises is optimal, but that requires persistence. There is hope that the studies presented at ASH 2022 will lead to changes down the road, but in the meantime, it is the squeaky wheel that will get the grease. It is time to get squeaky and ask for help!
While HealthTree does not offer professional mental health services it does offer group and personalized connection and support. The HealthTree Coach program provides personalized support from myeloma patients and caregivers. Shared perspective and knowing someone can relate to what you are experiencing is impactful. Becoming a HealthTree Coach can also help improve mental health as you serve others.
The HealthTree Community program provides group support through chapters organized by topic and shared interests. Chapters include: Caregiver, Stem Cell Transplant, Relapsed/Refractory Myelomam, and Nutrition and Wellness Chapters.
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about the author
Diane Kennedy is a care partner to her husband, Todd, who was diagnosed with multiple myeloma in 2017. She spent her career working in marketing and as a freelance writer. In 2020 she and Todd decided to transition from their professional careers to focus their efforts as patient advocates, Myeloma Coaches, and co-leaders of the SoCal Myeloma Community Support Group.