Personal Financial Effects of Multiple Myeloma and Its Treatment

Julia A. Goodwin, PhD, RN; Elizabeth Ann Coleman, PhD, RNP, AOCN; Ellen Sullivan, MNSc, APN, ACNP-BC; Robin Easley, MNSc, ACNP-BC, OCN; Paula K. McNatt, LPN; Nupur Chowdhury, MA; Carol Beth Stewart, BS

Disclosures

Cancer Nurs. 2013;36(4):301-308. 

In This Article

Abstract and Introduction

Abstract

Background: Improvements in some treatment programs for multiple myeloma (MM) are increasing survival. As patients live longer with MM as a chronic disease, the personal financial effects of MM treatment become a serious concern.

Objective: The objective of this study was to identify the personal financial effects of MM and its treatment in 5 areas: employment, disability, health/medical and life insurance, retirement, and out-of-pocket expenses.

Methods: We mailed a questionnaire about financial issues to 1015 patients who had received intensive treatment for MM at the study site. Data analysis included descriptive statistics and comparisons using independent t tests.

Results: Our sample (n = 762; mean age, 61 [SD, 9.26] years) experienced issues with employment (66% employed at diagnosis and treatment; 33% employed at questionnaire time), disability (35% applied), health/medical and life insurance (29% lost coverage and 8% changed coverage), retirement (13% retired during treatment), and out-of-pocket expenses (36% of income in first treatment year and 28% of income during most recent 12 months).

Conclusions: Issues of employment, disability, health insurance, retirement, and out-of-pocket costs for treatment are major challenges for patients.

Implications for Practice: In the midst of assessing physical needs during clinical trials for chemotherapy and stem cell transplants, healthcare providers must keep sight of patients' personal financial needs so that we can intervene promptly with referrals to social work, rehabilitation therapy, and other healthcare professions to help patients decrease the personal financial effects of MM and its treatment.

Introduction

Multiple myeloma (MM), a plasma cell cancer, has deleterious effects on bone marrow and skeletal integrity, leading to susceptibility to infection, anemia, elevated serum calcium levels, pain, and bone fractures. Further, excess protein can lead to renal failure. Depending on the data period and data source used, studies have found that MM has a 5-year survival rate of about 40%[1] to 42%.[2,3] There is no definitive cure at this time, but recent improvements in treatment programs have increased survival from 3 to 4 years to an average of 7 to 8 years.[4]

Treatment for MM often involves weeks or months at a treatment center, usually away from home, to receive intensive chemotherapy and stem cell transplantation. Protocols vary at different MM treatment centers, but all include intensive treatment and require a large time commitment from patients and their caregivers. Patients receive chemotherapy and daily laboratory monitoring at the treatment center almost a third of the time. Even during rest periods from chemotherapy, daily laboratory monitoring and frequent clinic visits are necessary, although patients may be able to travel home for at least a portion of the rest period if they can see their local oncologist for monitoring.

Clinical trials of MM treatment have collected data on toxicities of intensive treatment, response to treatment, and survival, but data on the financial effects of MM treatment usually are not part of these data. The cost of treatment for MM includes the costs of chemotherapy, procedures, tests, and other aspects of care. However, there are additional costs for travel, lodging, and time, as well as copayments, deductibles, and other cost-sharing components of the overall cost. The way these costs are paid is generally related to whether patients are employed, have health insurance or other insurance benefits related to employment or private coverage, or have benefits through social programs.

The purpose of this study was to identify the long-term personal financial effects of MM and its treatment in 5 areas identified by researchers in cancer and in public health:[5–9] employment (work for monetary compensation outside the home), disability (formal designation by US Social Security Administration or private insurance company), health/medical and life insurance, retirement (cessation of employment, with or without pension or other retirement funds), and out-of-pocket expenses (costs incurred related to healthcare but not fully paid by insurance or other financial support program).

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