In this group of mainly insured breast cancer survivors, we found that in the six month period following completion of breast cancer treatment, more than 50% reported at least one economic burden event related to either work or financial hardship. More than a quarter reported changes in income or sacrificing things like family plans over a 6 month period, and among those who worked, more than 15% reported changes in motivation, productivity or quantity (missed days) of work. These events, in turn, were negatively associated with QOL.
Even though the majority of our participants had health insurance, they were not spared financial hardship associated with the disease. In fact, over time more women reported increases in insurance premiums. Our findings are consistent with Arozullah and colleagues who noted that survivors with comprehensive health insurance continued to report having economic burden 18
. Yet, cancer survivorship plans rarely include a discussion of economic burden related to insurance premiums and how to manage out of pocket costs for exceeded insurance benefits.
In general, data indicate that a cancer diagnosis leads to higher economic burden 19–22
. Cancer survivors, for example, have higher out-of-pocket costs for medical care than persons who do not experience cancer 20,21,23
. Cancer survivors also have a higher risk for high economic burden compared with patients with other chronic illnesses 22
. A diagnosis of cancer is one of the major reasons for declaring bankruptcy due to medical events which was one of the economic burden events that we also measured 24
. Therefore, it is reasonable to assume that the economic burden events reported by our BCEI participants were related to the cancer diagnosis. Moreover, breast cancer can be particularly burdensome due to its sequelae. Management of breast cancer complications such as lymphedema 25
and recurrence 26
have been associated with an increase in economic costs and burden. Similarly, chemotherapy treatment is a predictor of greater financial problems after treatment has ended 27,28
. Our study findings also supported that chemotherapy was associated with more economic burden events.
Our results indicated that survivors reported persistent economic events in the months after initial active treatment. These findings are consistent with Gordon and colleagues who found that increased health service expenditures and lost income were the most common sources of economic burden identified by breast cancer survivors up to 18 months after diagnosis. 29
Most BCEI participants worked either full or part time during treatment, and continued to work after treatment ended. Changes in motivation, productivity, and quality of work declined significantly over time. Six months after study entry, they regained work productivity. These findings are similar to Rasmussen et al 11
who conducted qualitative interviews with cancer survivors to examine diverse patterns of work, and found that survivors described work as important in establishing their identity, and creating social relationships. Survivors who maintained regular work schedules during treatment were able to retain productivity 11
. On the other hand, Maunsell found that breast cancer survivors who interrupted work schedules during treatment and later returned to work after cancer treatment ended, reported negative outcomes including job loss, demotion, unwanted changes in work, and problems with their employer. These survivors also reported a personal change in attitudes and diminished physical capacity 30
. These findings suggest the need for future studies to help survivors continue to work or modify work while on treatment, rather than to take a leave of absence and reenter the workplace after treatment ends.
While BCEI participants reported economic burden, other investigators found extreme economic hardship reported by minority and underserved women with cancer. Darby and colleagues noted that underserved African American breast cancer survivors reported economic hardship because of lack or inadequate health insurance coverage 31
. Ell and colleagues found medical cost, income, and financial stress were high in a population of low income Hispanic women receiving cancer treatment 32
. Gray reported financial burden among rural Canadian breast cancer survivors 33
The impact of increased economic costs can result in a “trade-off” between paying for breast cancer or paying for regular family expenses 34
. Sherwood interviewed 22 breast and ovarian cancer survivors who reported having to access retirement or savings to pay for breast cancer expenses. Survivors worried about their future financial expenses and the impact on their work income 34
. Our study showed similar findings in that more than a quarter of survivors reported “sacrificing other things” like vacations, although this proportion declined significantly over the six month period from 40% to 30%. Financial difficulties often affect the cancer survivorship experience and can lead to psychological distress 32,35–37
. Gupta et al. also found an association between perceptions of financial difficulty and lower satisfaction with QOL 37
. Kobayashi and colleagues in Japan reported the negative impact of lower family income and loss of employment on QOL among Japanese cancer survivors 38
. Yet, Miller and colleagues found that when economic concerns were addressed, QOL among advanced cancer survivors improved 39
While our study population focused on breast cancer survivors, the findings have relevance to the practice and research in gynecologic oncology. First, the Society of Gynecologic Oncology (SG0) Breast Cancer Task Force Mission Statement published in 2008 is “To promote the provision of comprehensive breast health and cancer care of women, including education, research, screening, prevention and treatment (p7).” 40
Authors of the SGO Statement further argue for a comprehensive model of care among physicians who can encompass all physical and psychological aspects of diagnosis, initial and adjuvant treatment, and surveillance
. This statement resonates with breast cancer survivors who neither routinely nor exclusively resume cancer surveillance and follow-up with their medical oncologists. Survivors may choose to return for surveillance to see their regular primary care provider or gynecologist. In support of this evidence, a 2007 SGO Strategic Planning Survey found that 67% of gynecologic oncology respondents reported seeing five patients having a personal history of breast cancer per month, with 26% reported seeing up to eleven breast cancer survivors per month40
BCEI economic burden findings may also have relevance for the growing numbers of gynecologic oncology survivors who are likewise younger, employed, and have a full plate of family and social responsibilities. Data, however, are sparse and yet are vitally needed to determine whether gynecologic oncology survivors face similar or other concerns in economic burden and hardship that have not yet been identified.
Several strengths are identified in our study. First, this is one of the first studies to examine changes in economic burden among women in survivorship after treatment has ended. Thus, the findings add to our understanding of economic burden occurring in survivorship. Second, survivors are living longer and may face financial hardship and economic burden that are neither planned nor expected. Thus, QOL interventions that specifically include managing the potential for hidden or unknown expenses or economic downfalls are warranted.
Researchers interested in evaluating financial concerns and economic burden can begin to test interventions that can satisfactorily address financial concerns during survivorship. With a longer expectation of survival and differential changes over time and their influence on quality of life is a rich arena for future prospective, longitudinal evaluations of the effects on quality of life.
Several limitations are also acknowledged. First, the homogenous study participants (e.g., Caucasian, working, and income) as noted earlier, do not reflect the economic burden experienced by women of color, rural, and/or poor women. While the BCFS added rich descriptive data, we were not able to address changes over time because of the binary yes/no nature of the questions. Moreover, the surveys had inherent recall difficulties, but these may apply more specifically to the out of pocket costs. With worse toxicity from chemotherapy, survivors may also report worse recollection of financial impact. If there were recall difficulties, we may have underestimated economic burden. Thus, future investigations may warrant additional cancer survivor-specific survey development. We also acknowledge Gupta and colleagues’ recommendations that there is not yet a single assessment survey that explores the many facets of economic burden and financial difficulty 37