A new study published in “Blood Advances” reveals that caregivers for patients with multiple myeloma may experience higher levels of depression and anxiety than the patients themselves. While there are ample studies documenting the psychological and emotional effects a disease can have on patients, there is limited understanding of how terminal illnesses affect the friends, family, and loved ones caring for these individuals.
Multiple myeloma (MM) is an incurable form of cancer that affects white blood cells found in the bone marrow. Instead of producing antibodies like healthy white blood cells, these cancerous cells create abnormal proteins that can cause complications such as thinning bones, anemia, frequent infections, and kidney failure. Treatment tends to be extensive, aggressive, and costly, taking a heavy physical and emotional toll. The cause of MM is unknown.
“We appreciated that the caregivers are a significant part of the patient experience and wanted to better understand their experience so that we could help to address areas where there was a need for support,” said lead author Elizabeth O’Donnell, MD, an oncologist at Massachusetts General Hospital. “Mental health is a critical issue. Health professionals need to be aware that a large portion of their patients and their caregivers are suffering from clinically significant mood disorders”
A total of 127 caregivers for patients diagnosed with MM and receiving treatment in the Dana-Farber/Harvard Cancer Center Network between June 2020 and January 2021 participated in the study. Participants were organized into three groups based on the treatment regimen currently being administered. Caregivers answered validated questionnaires designed to assess quality of life and psychological distress levels.
According to the results, 44.1 percent of caregivers displayed symptoms of clinical anxiety, 15.8 percent showed symptoms of depression, and 24.2 percent showed symptoms of post-traumatic stress disorder.
The authors compared these results to a corresponding study published in the journal “Cancer” and found that levels of anxiety were higher in caregivers than patients with MM.
The ongoing nature of MM and the likelihood of relapses means that patients often have to go through multiple, expensive rounds of treatment over the course of several years. Repeatedly dealing with the financial and emotional burden can have a cumulative effect on one’s mental health.
“This elevation is seen across the spectrum of the disease from early in therapy to late in therapy. Given that MM therapy can span the better part of a decade, this is a substantial amount of time to suffer anxiety and depression,” said O’Donnell.
The study also illuminated a concerning issue of communication between providers and caregivers. While the majority of caregivers acknowledged that their oncologist informed them that the cancer was incurable, only 50.9 percent believed that the disease is actually terminal.
“I think that the prognostic awareness may reflect multiple factors: hope, first and foremost—the idea that there is a possibility the patient could still be cured. But there may also be nuances to how we ask the questions and the specific language around terminal illness that affects prognostic interpretation,” said O’Donnell.
Improvements to the screening process for both patients and caregivers affected by MM, as well as continual communication on the part of care providers could provide more insight for health care professionals, allowing them to act quickly to support caregivers with mental health issues when they arise.
“It is very important to have open conversations with patients and their caregivers about mood. Given that the MM journey spans many years, it is essential to have open communication so that quality of life can be optimized,” said O’Donnell. “This information will be useful to mental health providers as it may suggest to them that the caregiver’s role in the patient’s cancer treatment may be contributing to their mental welfare. We need to screen for anxiety and depression and address these appropriately.”
The research team cited some variables that should be taken into consideration when examining the results of the study. Most notably, that the study took place during the COVID-19 pandemic, which may have affected anxiety levels in both patients and caregivers.
O’Donnell also noted that for patients, some of their psychological symptoms may be mitigated by the medications they are prescribed for treatment. She hopes that future studies will help determine the specific sources of anxiety and depression in patients and caregivers.