A study in Blood Advances highlights the toll that a terminal diagnosis can have on everyone around a patient.
Those who care for people diagnosed with multiple myeloma (MM) may see higher rates of depression and anxiety than the patients themselves, according to a study published today.
The findings, appearing in Blood Advances, highlight the toll that a terminal diagnosis can have on everyone around a patient. While the mental health effects of living with a deadly disease are widely acknowledged, the family and friends who care for a patient are rarely studied, according to authors from Massachusetts General Hospital (MGH) and Dana-Farber Cancer Institute.
In this case, investigators focused on caregivers for patients with MM, which has seen major treatment advances over the past 20 years but remains incurable. MM affects white blood cells in the bone marrow, causing symptoms than can range from fever to bone pain. Even when patients receive aggressive treatment, they may receive 4 more regimens over the course of their illness, each one causing side effects and creating uncertainty for families.
Nearly 35,000 people are newly diagnosed with MM in the United States each year and an estimated 12,600 people will die from the disease. Most of the newly diagnosed are over age 60; the average age of a patient with MM is 70. With 13 new agents and 29 different regimens approved for MM over the past decade, the 5-year survival rate is now 55%.
However, these successes do not eliminate mental health symptoms that caregivers experience, which the study found appear right away and do not ebb over time.
“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,” Elizabeth O’Donnell, MD, a medical oncologist at MGH, said in a statement. “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.”
Investigators studied 127 caregivers for patients diagnosed with MM who received treatment in the Dana-Farber network between June 2020 and January 2021. Caregivers were sorted into groups based on the number of lines of treatment their loved one had received. These included 43 caregivers of patients who were newly diagnosed, 40 who had 2 to 3 lines of therapy, and 44 caring for those who’d received at least 4 lines of therapy. All caregivers then completed a validated questionnaire to assess psychological distress levels and quality of life. Results showed that caregivers’ mental health measures were the same regardless of how long their loved one had been treated for MM.
But the caregivers had serious symptoms:
Investigators compared the caregivers’ symptoms with those reported by patients in a complementary study that appeared in the journal Cancer, and they found that caregivers reported even higher rates of anxiety than patients.
The questionnaire also uncovered communication gaps between physicians and caregivers. A large share of the caregivers (84.2%) reported “that the patient’s oncologist had informed them that the patient’s cancer was incurable.” However, only 50.9% of caregivers acknowledged that the patient’s cancer was terminal, and 53.6% acknowledged that it was incurable.
O’Donnell said these results could indicate wishful thinking or caregivers being hopeful, but they also suggest that poor communication between providers and patients and caregivers contribute to lack of understanding.
Better screening of patients and caregivers affected by MM through disease progression could give health care professionals better insights and cause them to move more quickly to support those experiencing mental illness, she said.
Investigators noted that because their study took place during the COVID-19 pandemic, their results may affect patient and caregiver anxiety levels exacerbated by challenges in delivering care and other factors.
“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,” O’Donnell said. “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.”
Blood Advances is an official journal of the American Society of Hematology.
O’Donnell E, Shapiro Y, Yee A, et al. Quality of life, psychological distress, and prognostic perceptions in caregivers of patients with multiple myeloma. Blood Adv. Published online July 18, 2022.