Different Level and Difficulties with Financial Burden in Multiple Myeloma Patients and Caregivers: A Dyadic Qualitative Study

Abstract

Objectives: This study aimed to explore the multifaceted financial burden experienced by patients with multiple myeloma (MM) and their caregivers, focusing on direct and indirect costs, as well as variability and discordance in perceived financial burdens.

Methods: A dyadic qualitative study was conducted with 40 patient-caregiver pairs recruited from a tertiary hospital in Seoul, Korea. Semistructured interviews were used to explore participants' experiences with financial burden, and thematic analysis was performed to identify key themes. Quantitative analyses were also conducted to examine clinical and sociodemographic data.

Results: A total of 80 participants (41 patients and 39 caregivers) were enrolled. Patients had a median age of 70 years, with a median time since diagnosis of 24 months. Financial burdens were categorized into direct medical and nonmedical costs, as well as indirect costs such as income loss. Variability in financial burden was influenced by factors such as patient age, disease state, and financial stability. Caregivers, particularly adult children, reported a broader perspective on the long-term financial impact, while patients focused on immediate costs. Discordance in perceived burden was evident in over 75% of dyads, with caregivers often perceiving a heavier burden than patients.

Conclusions: The financial burden of MM is complex and evolves over time, with notable differences between patient and caregiver perceptions. Caregivers bear significant nonmedical and indirect costs, while patients emphasize immediate financial concerns. These findings highlight the need for family-wide financial counseling and support to address the evolving nature of financial toxicity throughout the disease journey.

Implications for nursing practice: Nurses play a vital role in addressing the financial burdens of MM patients and caregivers. They should facilitate open communication to align expectations, provide financial counseling, and advocate for family-centered care. By supporting tailored interventions and resource access, nurses can help reduce financial burden, improving the overall well-being of patients and their families.

Keywords: Caregivers; Dyadic study; Financial burden; Indirect costs; Multiple myeloma; Patient-centered care.