Personal Financial Burdens of Multiple Myeloma: A Deep Dive into the Patient's Journey Using Qualitative Interview
Authors: PARK YoungJu , Cho Juhee , Kim Sooyeon , Kim Kihyun , Yoon Sang Eun , Kang Danbee , Bang Garam , Kim Nayeon , Park Jeong Hyun , Kim Seok Jin 
Published: December 2023

Background:

As multiple myeloma (MM) treatments continue to advance rapidly potentially enabling patients to coexist with MM as a chronic disease, understanding the personal financial burden these patients and their family caregivers bear is critical. Most previous studies have analyzed direct medical costs mainly focusing on medication and hospital visits, but a broader analysis covering the overall financial burden on the disease journey has not been extensively explored. Our study aims to explore and understand the diverse types of financial burdens experienced by MM patients who are newly diagnosed or relapsed and their family caregivers personally aside from medical expenditures along their disease and treatment journey.

Methods:

We used cross-sectional study using mixed methods by integrating quantitative and qualitative data. The study was conducted at Samsung Medical Centre in Seoul, Korea from October 2021 to December 2022. Patients and their caregivers were recruited at out-patient clinics, and 60-90 minutes semi-structured interviews were conducted via face-to-face or telephone. We used thematic analysis to identify and organize qualitative data into the patterns of theme. Quantitative data including clinical and socio-demographic information of the study participants were obtained from survey and/or patients' Electronic Medical Records.

Results:

Overall, 80 participants were enrolled: 41 patients and 39 family caregivers. Clinical/socio-demographic information and the distribution of study participants are on the Table 1.

In our study direct medical costs (e.g., treatment and medication fee) itself demonstrated minimal impact on personal financial burdens since cancer patients cover only about 5% of the total medical expense upon public healthcare insurance policy in Korea. Surprisingly, more than half of patients were reported to have experienced greater financial burdens in indirect or non-medical expenses.

Five main types of personal financial burdens incurred by MM and its treatment were categorized through thematic analysis with quotes from qualitative interview in Figure 2. Within the realm of medical costs, some patients experienced financial burden with the inadequate support before their diagnosis is determined or with non-reimbursed medication on active treatment. Moreover, the additional financial burden from non-medical costs manifested conspicuously both directly and indirectly. Such as time and money for the transportation for outpatient treatment, unpaid leave for hospital visits or hospitalization and productivity loss significantly impacted both patients and caregivers.

Interestingly, symptoms from disease or adverse events led to considerable unexpected personal spending in some cases. For instance, neuropathy, a common side effect of MM treatment, compelled some patients to purchase a vehicle with autonomous cruise or resort to increased taxi use due to fears related to driving. Other costs included services or aids (massage, bath or thermo-therapy) for neuropathy home remedies, increased grocery expenses due to appetite loss, and housekeeping expenses arising from fatigue and insomnia. Similarly, ‘health-conscious consumption’ was also observed to increase in some case, such as dietary supplements or organic foods.

A cost that is difficult to generalize but shouldn't be overlooked in a long-term, macro perspective is the loss of opportunity costs due to disease or treatment (e.g. decrease in long-term investments, giving up job-seeking activities). This was particularly noticeable in those who were younger or self-employed.

Discussion:

Everyone has their own individual circumstances, and the financial impact of these circumstances varies considerably, making quantification challenging. Moreover, the significance of a given sum of money can vary individually. Thus, we sought to examine the economic impacts and financial burden on the disease journey within the diverse lives of individuals through a qualitative lens.

Our qualitative approach revealed that the financial burden of disease/treatment in each individual's life can be felt incomparably greater than what previous quantitative research had estimated only for direct medical expenditures. Our findings should also underscore the need for comprehensive strategies to alleviate the personal financial burdens borne by MM patients and their caregivers.