Symptom burden and palliative care for patients with multiple myeloma: Cancer Experience Registry findings.
Buzaglo, JS; Miller, MF; Karten, C; Longacre, M; LeBlanc, TW
Published in: Journal of Clinical Oncology
81 Background: Multiple myeloma (MM) patients are living longer with treatment advances yet remain challenged by complications and adverse treatment effects. Concurrent oncology/palliative care can improve symptom burden and quality of life for cancer patients, but the benefits of concurrent care for the MM symptom burden is not well described. Methods: From July 2013-2014, the Cancer Support Community (CSC) registered 495 MM patients to the Cancer Experience Registry: MM, an online initiative to study and raise awareness about MM’s psychosocial impact. Registrants were recruited through an outreach program including the CSC and The Leukemia & Lymphoma Society networks of communities and resources. 331 US-based registrants completed surveys about their MM history, treatment, and symptoms. Results: Median respondent age was 64 years; 54% were female, 87% Caucasian. Median time since diagnosis was 4.5 years, and 40% reported experiencing a relapse. Several symptoms interfered (quite a bit or very much) with respondents’ daily life: fatigue (40%), bone pain (22%), peripheral neuropathy (22%) sleep disturbance (21%), GI toxicity (16%), and mood swings (10%). The daily effects of fatigue, pain, sleep disturbance and mood swings were associated (p < 0.05) with distress. 36% did not report all symptoms and side effects (SEs) to their health care team (HCT). The most common reason was “I don’t think anything can be done about these problems.” More than half (58%) reported sleep disturbances related to steroids, and 46% experienced weight gain, 41% mood swings, and 39% edema. One-third (34%) reported their HCT never told them steroids could cause this. 85% felt their HCT prepared them (somewhat, quite a bit, or very much) to manage SEs of MM treatment, yet half (50%) felt little or no control over the physical SEs of MM and its treatment. Conclusions: Patients with MM experience significant symptom burden that interferes with daily living but underreport symptoms to the HCT. Many symptoms are amenable to interventions by palliative care specialists, which may improve MM patients’ quality of life. These findings suggest the need for more integration of palliative care services with oncology and other care for MM patients.
