Impact of Social Needs and Identity Experiences on the Burden of Illness in Patients with Multiple Myeloma: A Mixed-Methods Study

Abstract

Multiple myeloma (MM) is a common hematologic malignancy, but due to its incurable nature, patients experience many relapses in their lifetime and hence face unique challenges. This mixed-methods study consisting of an online survey and subsequent focus groups aimed to understand how social and identity experiences affected the diagnostic, treatment, and care journey for patients with MM. Twenty-three adult patients with MM participated in this study. The survey participants identified common determinants negatively impacting their health, including mental health concerns (experienced by 90.5% of respondents), worries about food shortage (42.9%), and transportation concerns (28.6%). Focus group participants described high physical and mental health burdens associated with MM. Frequent monitoring, fear of a relapse, and unpredictable side effects contributed to high anxiety. Participants indicated that MM differed from other types of cancer and chronic health conditions in many ways, particularly how and where the diagnosis was made, disease progression and relapse, treatments and side effects, and financial concerns. Most participants (65.0%) reported ≥1 social need that negatively impacted health outcomes including lack of knowledge about MM, financial instability, and lack of insurance, transportation, and social support. The findings reveal that patients with MM continually experience patient-specific mental and physical health burdens indicating high unmet needs throughout the disease journey.