Having knowledge that their multiple myeloma was incurable was associated with poor quality of life outcomes in patients.
Findings presented during the ASH Annual Meeting & Exposition 2021 showed that having knowledge of incurable disease correlate with higher rates of psychosocial distress and symptom burden and lower quality of life (QOL) in patients with multiple myeloma. Further, some patients still believed that they could still be cured.
“Multiple myeloma is an incurable hematologic malignancy requiring long-term continuous therapy. Despite its chronic and unrelenting course, studies examining quality of life, psychosocial distress and prognostic awareness by line of therapy are lacking,” study author Betsy O’Donnell, MD, director of Lifestyle Medicine and medical oncologist in the Multiple Myeloma Disease Center at Massachusetts General Hospital said while presenting the findings.
In an attempt to fill this research need, O’Donnell and her team conducted a cross-sectional, multi-site study of 180 patients with multiple myeloma. Sixty patients were newly diagnosed, 60 underwent 2-3 lines of therapy, and 60 underwent 4 or more lines of therapy. Individuals on maintenance therapy were excluded. A validated questionnaire was used to analyze patient’s feelings of QOL, symptom burden, fatigue, psychological distress, and perceptions of prognosis.
The average age of study participants was 68, 52% were female, and 89% were white.
Findings revealed that there was no significant difference in QOL, symptom burden, fatigue, depression, anxiety, or PTSD symptoms by line of therapy. Overall, 24% of patients were experiencing clinical depression, 24% anxiety and 24% PTSD.
The majority (84%) of patients reported that it was “extremely” or “very” important to know about their prognosis, with 66% stating that they received adequate information on their prognosis.
“Patients reported that prognostic information was extremely or very helpful in making decisions about treatment, coping with disease and preparing for thefuture,” O’Donnell explained.
Interestingly, 85% of patients reported that their oncologist told them that their cancer was curable, but only 31% acknowledged that they were terminally ill, and 42% reported that they believed their cancer was curable.
Patients who were receiving 2-3 lines of therapy were more likely than those getting their first line of therapy to acknowledge their terminal illness (36.7% versus 19.6%; p=0.045) and that their disease was not curable (90% versus 75.9%; p=0.047).
“With regard of treatment goals, nearly 23% of all patients report that their primary goal of therapy was cure, and 18% reported that their oncologists’ primary goal was cure,” O’Donnell said. “Although the majority reported that their oncologist had told them their cancer was incurable, a substantial proportion still report that they believe that they were curable.”
The patients who acknowledged their terminal illness reported higher rates of depression, anxiety, and symptom burden, as well as lower QOL.
O’Donnell concluded, “Multiple myeloma patients undergoing treatment experience impaired quality of life and elevated psychological distress across the disease and continued irrespective of their line of therapy … Interventions are needed to improve patient QOL, reduce their psychological distress and cultivate adaptive coping strategies that may help improve the patient experience over the multiple myeloma disease course.”
O’Donnell E, Shapiro Y, Nadeem O, et al. Quality of life, psylogical distress, and prognostic awareness in patients with multiple myeloma. Presented at: Presented at: 2021 ASH Annual Meeting and Exposition; December 11-14, 2021; Atlanta, GA. Abstract 4082