The Internet is commonly used to provide treatment information to patients diagnosed with cancer. Notably missing from the existing websites is information on the cost of cancer care in terms of medical costs to the patient and work-related consequences. The purpose of this paper is to describe what is known about the economic cost of cancer and to describe how this information can be structured so that it is of more benefit to patients. This paper first provides an overview of the information available regarding medical expenses and productivity costs associated with cancer survivorship, particularly with respect to cancer and employment. Second, it draws attention to the sparse economic information available online to cancer survivors. Patients can find information on sources of financial assistance, but they cannot estimate from the available information the cost of their care or anticipate the impact that cancer and its treatment may have on their jobs. Finally, a strategy for filling the void in online economic cancer information is described. Substantial opportunity exists to provide economic information to cancer patients and their families. The Internet is a natural forum for gathering and disseminating economic information. A unique advantage of the Internet is its ability to put information immediately in the hands of cancer patients and their families—assisting them to become informed consumers and skilled negotiators.
The US National Cancer Institute (NCI) has made several calls for research with regard to the economic aspects of cancer diagnosis, treatment, and, ultimately, survivorship. A major impetus for such research is that the prevalence of early stage disease is rising and the number of long-term survivors now approaches 10 million as many cancers are becoming chronic conditions. Yet our understanding of how newly diagnosed cancer affects the economic viability of survivors and their families is remarkably incomplete. Economic information is largely absent from common Internet websites that offer information to cancer patients and their families—leaving patients in the untenable position of having to make treatment choices without fully understanding the costs and the impact on their ability to work.
Two important dimensions of economic data—medical and productivity costs—are relevant to patients, physicians, and society. This paper takes the patient's point of view. Direct medical costs are defined as the cost of medical care, including inpatient, outpatient, physician and other provider services, pharmaceuticals, and supportive care. From a patient's perspective, these costs are highly relevant since the costs associated with cancer care can be very expensive and perhaps prohibitive—even for patients who have generous health insurance benefits. As these costs rise, physicians and other health care providers may find themselves in the position of discussing with patients the trade-offs of treatment in terms of their relative costs and benefits. As aptly noted by Fryback and Craig, “Sooner or later a balance must be struck between the cost of interventions and their effectiveness” [
Productivity costs are defined as the time loss from work or the inability to fully function on the job when present. Documenting health-related economic losses is of great interest to patients and employers, who share the economic burden of illness. The probability of developing cancer is 1 in 12 for individuals aged 40 to 59 [
The purpose of this paper is to describe what is known about the economic cost of cancer and to describe how this information can be structured so that it is of more benefit to patients. This paper first provides an overview of the information available regarding medical expenses and productivity costs associated with cancer survivorship, particularly with respect to cancer and employment. Second, it draws attention to the sparse economic information available online to cancer survivors. Finally, a strategy for filling the void in online economic cancer information is described.
Nationally, the direct cost of cancer care was approximately US $60.9 billion in 2002 [
These studies provide useful information to health care providers, payers, and perhaps policy makers, but they are less beneficial to patients who need to consider cost in their treatment decisions. In addition, these studies fall far short of describing the range of treatment options available for different types of cancer. Fryback and Craig argue that, in many cancer interventions, the patient can be considered a provider of care along with the oncologist [
Because not all costs apply to all patients due to variations in health insurance benefits and other financial arrangements, the current methods used for collecting and estimating economic cost are not useful to patients. Thus, alternative methods for estimating the economic costs for patients and families are required. In the scientific literature, some studies have counted resources used to treat patients for cancer [
The economic burden on patients and their families for cancer treatment may include the immediate cost of treatment, out-of-pocket expenses (eg, supportive care medication, co-payments, child care), and future costs required for cancer surveillance, follow-up care, and treatment of persistent symptoms (eg, pain, fatigue) [
The availability of economic information can greatly affect health outcomes. For example, a woman choosing between mastectomy and breast-conserving surgery needs to know if she can afford chemotherapy, radiation, and tamoxifen following lumpectomy. She and her family must consider the resources (eg, transportation, time away from work, child care) required to complete radiation and chemotherapy. If she cannot complete the care regimen following lumpectomy because of financial concerns, mastectomy may be a more optimal choice for her long-term survival. On the other hand, if the woman chooses a lumpectomy because of rapid recovery time and lower immediate costs, but later becomes non-adherent to chemotherapy and radiation therapy, she will jeopardize her long-term health. Unfortunately, less than optimal treatment choices are likely to be made by patients who have the fewest resources to rely upon.
Incorporating an economic dimension into cancer care raises deeply rooted ethical concerns and contradicts a notion of cure at any cost. However, ignoring the financial burden of cancer care may jeopardize patient outcomes if patients choose a course of treatment but alter the dose (as they can with oral medications) or prematurely cease treatment. Patients and their families need to consider treatment choices in light of economic costs.
Turning the discussion to work loss, the literature is unequivocal about work loss attributable to cancer. In addition, as more and more working-age individuals are screened for cancer, employed, as opposed to retired individuals, will be treated for cancer. For example, the US Preventive Services Task Force found evidence that annual prostate cancer screening can detect early-stage prostate cancer in men age 50 and over [
Some studies [
Research using data from the Health and Retirement Study examined labor market participation, wages, and earnings of breast cancer survivors relative to a nationally representative non-cancer control group [
Research has found that men who are treated for prostate cancer have substantial complications that may interfere with their activities of daily living including their ability to work [
Few studies have measured absenteeism for those who remain employed while undergoing treatment and who return to their jobs after completing treatment. The Midlife Development in the United States Survey asked respondents questions about how many out of the past 30 days they were either totally unable to work or perform normal activities because of health problems (work loss days), or had to cut back on these activities because of health problems [
Clearly, cancer patients and their caregivers already access and rely upon the Internet for information regarding treatment and advocacy. One study reports that 58% of cancer patients and their companions have access to the Internet from a home computer [
Although there is a plethora of websites that provide cancer treatment information, few websites provide economic data. For example, Kelahan [
A recent online article unfolded a story of rising costs of cancer drugs that extend life for only a few months beyond what can be achieved with standard therapies [
Some websites offer assistance with regard to seeking financial resources. For example, the NCI website lists states that require health plans to cover patient care costs in clinical trials [
Taken together, the websites that broadly address cancer care and cost include information on clinical trials and insurance coverage, lists of organizations that provide financial assistance to patients with cancer, options for uninsured patients, and general guidance for seeking information regarding health insurance coverage. Absent from all of the websites reviewed is information that allows patients to estimate their costs prospectively so that they know and understand prior to seeking treatment the costs that they may incur. Although many patients are overwhelmed with their diagnosis, they require tools (eg, standardized worksheets, organizers) to help them plan for the expenses they may incur and to initiate discussions regarding cost with their providers before choosing a treatment path. Patients also require information on how to identify charges that are unrelated to their care and to alert their health care providers about inappropriate charges. Finally, patients need to be aware that they can negotiate with health care providers regarding payments and scheduling treatments so that the impact on work is lessened.
Brown et al lamented that acquisition of data to operationalize economic measures is far from complete [
Research published in the scientific literature has linked cancer with substantial work loss. Yet, an Internet search of websites that address return-to-work issues for cancer survivors revealed a segmented approach to cancer treatment and returning to work. One site phrased its introduction to work issues as “When you're finally able to concentrate on something besides your cancer treatments, chances are you'll look forward to getting back to a more normal routine—this may mean going back to work” [
Worthy of note is that the general tone of most websites describing the ADA and FMLA is litigious in nature. A legal perspective is partially relevant because many employed patients may be unaware that cancer is a condition covered by the ADA and their employers may inadvertently (or intentionally) violate the rights of these employees. However, a proactive, problem-solving approach to planning time away from work and to job restructuring could potentially be more constructive for patients than guidance on how to seek remediation after a violation has occurred. Patients need assistance with planning time away, negotiating with employers, and remaining in contact with employers and coworkers. Patients need to prepare for time away from work and should have reasonable expectations regarding their work performance while undergoing treatment. Patients who plan ahead may be more effective at negotiating with their employers and securing their jobs during treatment. Information on these topics is largely absent from the Internet—as well as other sources of patient information.
The many websites providing information on treatment, side effects, and methods for managing side effects make no mention of how treatment may interfere with patients' abilities to perform their jobs. Furthermore, many treatments have effects that may influence patients' job performance far into the future. The stimulus for work-related information may need to come from patients, advocacy groups, and government agencies. As cancer becomes a chronic condition, it is unrealistic and perhaps unwise to expect patients to quit their jobs altogether while undergoing treatment or to be unprepared for changes in job performance that extend beyond the active treatment period. Discussion about the integration of work and treatment along with strategies for lessening the burden of cancer and its treatment would be highly beneficial to cancer survivors and their families.
This paper describes two important economic dimensions—medical costs and productivity costs—that are vital to patients diagnosed with cancer and to their families (
Economic information needed by cancer patients
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Inpatient costs | Treatment side-effects specific to job performance |
Outpatient costs | Expected absenteeism |
Provider services | Protective laws and regulations |
Supportive care | Strategies for negotiation with employer |
Comparative treatment costs | Guidance for remaining employed |
Insurance coverage | Guidance for understanding sick leave, vacation, and retirement benefits |
Out-of-pocket costs |
Unfortunately, much of the information that would be helpful to patients does not yet exist, but it may become available in the future as more studies of the economic burden of cancer are sponsored. Nevertheless, intermediate steps can be taken toward providing information that may be very helpful to patients. First, websites containing clinical trial information should also contain cost and payment information. As part of this data, patients should be directed to explore payment options prior to enrolling in a trial or undertaking any treatment that may not be covered by their health insurance.
Second, websites and patient listservs that already provide a forum for patients to exchange information can be expanded to include the cost of care and help patients become more informed consumers (eg, [
Third, a website offering guidance to patients on how to organize their insurance information and charges for health care services by provider and date could be designed. This activity can help patients be more effective advocates for payment and readily address claims for service that have been denied by the health insurance. Charges and payment for health care services can be extraordinarily complicated and daunting under the best of circumstances. However, when faced with a potentially life-threatening disease requiring coordination of care across many providers, the task can be overwhelming for patients who are unprepared or less vigilant about ensuring that payment has been rendered for their health care.
Fourth, patients need information on how treatment may affect their ability to perform their jobs. Side effects of treatment are routinely described; however, the discussion of these side effects needs to be placed in the context of job performance. For example, statements about how fatigue may hinder some patients from performing theirs jobs, particularly if the job involves physical activities such as heavy lifting, walking, and standing for long periods of time, could be valuable to some patients who may not be aware that treatment may affect their job performance.
Fifth, patients require guidance on how much time away from work can be expected and how to proactively discuss absenteeism and job restructuring with their employer. Just as patients are encouraged to seek financial advice prior to initiating treatment, patients need to open communication with employers and coworkers about possible periods of absenteeism.
Finally, patients need to be encouraged to seek information on their sick leave, vacation, health insurance, and retirement benefits prior to initiating treatment. Without this information from their employer, patients may make decisions prematurely that can affect their future as well as their immediate economic well-being. In addition, through discussions with employers, coworkers, and other cancer survivors, patients may discover options for absenteeism and job restructuring that they had not previously considered. These recommendations are summarized in
Summary of recommendations
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Include cost information along with treatment information. Disclose the range of costs that patients may incur. |
Provide a forum for patients to exchange information on medical costs and payment resolution. Capitalize on existing Internet infrastructure (eg, support groups, listservs, and chat rooms). |
Guide patients on how to estimate costs and organize insurance information, provider charges, and payments. |
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Include information on how cancer treatment may affect job performance. |
Offer guidance on expected absenteeism and how to plan and negotiate for time away from work. |
Direct patients to explore health insurance, sick leave, vacation, and retirement benefits prior to initiating treatment. |
Long-range plans for filling the void of economic information require further planning and execution. Some suggestions for how to proceed include the following: (1) formally assess patient needs for economic information; (2) sponsor studies to fill the void in information identified by patients; (3) sponsor the development of a specific site dedicated to economic information; (4) provide an online forum for patients to share their experiences in paying for care, resolving medical bills, and obtaining resources for payments and to share their work experiences, both positive and negative; (5) develop a range of strategies for negotiation with employers and planning time away from work; and (6) take measures to more fully understand and report the impact that cancer treatments have on patients' ability to work.
The President's Cancer Panel 2003 Annual Report identified several issues affecting cancer survivors across the life span [
Americans with Disabilities Act
Family Medical Leave Act
National Cancer Institute