Parallel Journeys, Similar Challenges, and Different Reasons: Navigating Life Challenges in Multiple Myeloma from the Perspectives of Patients and Caregivers

Background With advances in multiple myeloma (MM) treatment and increased patient survival rates, supportive care for patients and caregivers has become increasingly important. This study aimed to identify life challenges and gaps faced by MM patients and their caregivers. Methods We conducted a mixed-methods study. Qualitative interviews and quantitative surveys were conducted with MM patients (aged > 18) and their caregivers at a university-affiliated cancer center in Seoul, Korea, from October 2021 to March 2022. Semi-structured in-depth interviews were conducted with each patient and caregiver separately. Quality of life (QOL) and cancer-related distress were assessed using the Distress Thermometer (DT) and the WHOQOL Brief Version. Results Of total, 41 patients and 38 caregivers (21 spouses and 17 adult children) participated in the study. Patients and spousal caregivers had similar DT scores (mean, 4.2 and 3.9; SD, 2.5 and 2.8). Due to the relapsing and recurring nature of the disease, patients encountered various challenges in their daily lives, including reduced physical and psychological function, diminished spiritual well-being, and strained family and social relationships. Primary caregivers reported facing almost identical challenges. However, although both patients and caregivers experienced similar difficulties, the underlying reasons for these challenges differed. For patients, the major causes were directly related to cancer and their declining health. In contrast, the caregivers’ challenges were primarily rooted in the burden of caring for the patient and managing the needs of the family. Conclusion While MM patients and their caregivers experience similar challenges, the underlying reasons differ significantly. Patients primarily face the physical and emotional burden of the disease, whereas caregivers deal with the demands of caregiving and financial stress. Tailored support systems that foster mutual understanding and address the specific needs of both patients and caregivers are essential for improving overall well-being throughout the MM journey. Trial registration: N/A