Caregivers for patients with multiple myeloma may suffer from higher rates of anxiety and depression than patients themselves, according to a new study published by O’Donnell in Blood Advances. Although medical professionals have long acknowledged the toll a serious or terminal diagnosis can have on a person’s mental health, few studies have investigated how these conditions affect the family members, friends, and loved ones who care for these individuals.

Multiple myeloma is an incurable cancer affecting the blood plasma cells. While existing treatments can greatly extend a patient’s life, the condition remains terminal. People with multiple myeloma often require extensive and aggressive treatment regimens, which can be both physically and emotionally taxing and come at high financial costs.

“Over many years of working with patients with multiple myeloma and their families, I gained a deeper understanding of how much this condition decreases the quality of life of everyone affected by it,” explained study author Elizabeth O’Donnell, MD, a medical oncologist at Massachusetts General Hospital. “Myeloma treatments, like chemotherapies, not only take large physical tolls on those diagnosed with the disease but can place a tremendous financial and emotional burden on patients and their families.”

Study Details

To conduct this study, Dr. O’Donnell and colleagues enrolled 127 caregivers for patients recently diagnosed with multiple myeloma and receiving treatment within the Dana-Farber/Harvard Cancer Center Network between June 2020 and January 2021. Researchers sorted participants into three cohorts based on the treatment regimen the patients they cared for were currently receiving. The caregivers completed questionnaires assessing their own quality of life and psychological distress, as well as their perceptions of their loved one’s cancer prognosis.

Questionnaire Results

Results highlighted that 44.1% of caregivers had symptoms of clinical anxiety, 15.8% had symptoms of depression, and 24.2% had symptoms of post-traumatic stress disorder (PTSD). In fact, when compared to patient symptoms as reported by the research team in a complementary study published in the journal Cancer, caregivers reported higher rates of clinical anxiety than patients with multiple myeloma.

The study also uncovered a critical gap in communication between providers and caregivers. Most caregivers reported that their oncologist had informed them that their loved one’s cancer was incurable, but only 50.9% acknowledged that the patient’s cancer was, in fact, terminal. Dr. O’Donnell voiced that wishful thinking, hope, and poor provider communications could all play a role in this gap in understanding.

She also emphasized that improving the way providers communicate a multiple myeloma diagnosis and treatment options to patients and caregivers may improve quality of life in both populations. Screening people affected by multiple myeloma at different points during the disease’s progression could allow health professionals to support those suffering from mental illness and provide intervention sooner.

The research team noted that this study took place during the COVID-19 pandemic, which may have played a role in both patient and caregiver anxiety levels. Further, while this study provides crucial information about the effects of serious diagnoses like multiple myeloma on caregiver well-being, future studies will help inform the specific sources of anxiety and depression they may be experiencing, such as treatment costs, the frequency of clinic visits, the fear of losing a loved one, and watching someone close to you suffer. They hope that these findings can inform future caregiver services.

“One thing I hope that people take away from this study is that health-care providers really do care about people’s experiences as they go through diseases such as multiple myeloma, and that they’re not alone in their suffering. Over a third of patients struggle with depression and anxiety and we urge you to tell your doctor if you’re suffering because we can help,” said Dr. O’Donnell. “We strive to give all our patients and their families the best quality of care not only from a cancer standpoint, but for their emotional well-being as well.”

Disclosure: For full disclosures of the study authors, visit ashpublications.org/bloodadvances.