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© 2001 American Society for Clinical Oncology Estimating the Cost of Informal Caregiving for Elderly Patients With CancerByFrom the Department of Radiation Oncology; Division of General Medicine, Department of Medicine; Institute for Social Research; Veterans Affairs Center for Practice Management and Outcomes Research; Consortium for Health Outcomes, Innovation, and Cost-Effectiveness Studies; and Department of Health Management and Policy, School of Public Health, University of Michigan, Ann Arbor, MI; and Ortho Biotech, Raritan, NJ. Address reprint requests to James A. Hayman, MD, MBA, Department of Radiation Oncology, University of Michigan Health System, UH-B2C490, Box 0010, 1500 East Medical Center Dr, Ann Arbor, MI 48109; email: hayman{at}umich.edu
PURPOSE: As the United States population ages, the increasing prevalence of cancer is likely to result in higher direct medical and nonmedical costs. Although estimates of the associated direct medical costs exist, very little information is available regarding the prevalence, time, and cost associated with informal caregiving for elderly cancer patients. MATERIALS AND METHODS: To estimate these costs, we used data from the first wave (1993) of the Asset and Health Dynamics (AHEAD) Study, a nationally representative longitudinal survey of people aged 70 or older. Using a multivariable, two-part regression model to control for differences in health and functional status, social support, and sociodemographics, we estimated the probability of receiving informal care, the average weekly number of caregiving hours, and the average annual caregiving cost per case (assuming an average hourly wage of $8.17) for subjects who reported no history of cancer (NC), having a diagnosis of cancer but not receiving treatment for their cancer in the last year (CNT), and having a diagnosis of cancer and receiving treatment in the last year (CT). RESULTS: Of the 7,443 subjects surveyed, 6,422 (86%) reported NC, 718 (10%) reported CNT, and 303 (4%) reported CT. Whereas the adjusted probability of informal caregiving for those respondents reporting NC and CNT was 26%, it was 34% for those reporting CT (P < .05). Those subjects reporting CT received an average of 10.0 hours of informal caregiving per week, as compared with 6.9 and 6.8 hours for those who reported NC and CNT, respectively (P < .05). Accordingly, cancer treatment was associated with an incremental increase of 3.1 hours per week, which translates into an additional average yearly cost of $1,200 per patient and just over $1 billion nationally. CONCLUSION: Informal caregiving costs are substantial and should be considered when estimating the cost of cancer treatment in the elderly.
CANCER IS A LEADING cause of morbidity and mortality among the elderly. The burden of cancer and its associated treatments on the elderly and their family will likely increase as, with the aging of the population, more elderly patients are diagnosed and treated for cancer. It is estimated that 60% of all incident cancers and 70% of all cancer deaths occur in individuals age 65 and older.1 While heart disease is the most common cause of death in the elderly, cancer is a close second.2 In fact, in individuals between the ages of 65 and 74, cancer is the most common cause of death in women and is roughly equal to heart disease as a cause of death in men. In addition, the proportion of the population that is over 65 is expected to grow significantly over the next three decades. While 34 million, or one in nine, people are currently 65 or older, by 2030 the number will have more than doubled to approximately 70 million, or one in five.1 Accordingly, as the population continues to age, the absolute number of elderly individuals being diagnosed with cancer, undergoing treatment for cancer, having a past history of cancer, and dying of cancer is likely to increase. These increases in the incidence, prevalence, and mortality of cancer among the elderly will result in higher "direct medical" coststhe costs that are directly attributable to the patients cancer, such as those for medications, physician fees, hospitalizations, and office visits.3 It is less obvious but equally true that these increases will also lead to higher so-called "direct nonmedical" costscosts that are still directly attributable to the patients cancer but are not for medical services, such as transportation, dietary supplements, and the labor costs and lost wages associated with family caregiving.3 As more and more cancer care is transferred from the inpatient to the outpatient setting,4 the burden of caring for elderly cancer patients is increasingly falling on their families, and these direct nonmedical costs will continue to grow. A number of studies have estimated the direct medical costs attributable to the care of elderly patients with different types of cancer.5-9 However, the information that is currently available regarding the prevalence of informal caregiving and its associated cost is quite limited. The few studies that have examined this issue have typically used relatively small geographically restricted convenience samples and/or have often focused on certain subgroups of cancer patients.10-14 Nevertheless, it should be noted that almost all of these studies found that informal caregiving costs accounted for a significant proportion of the direct nonmedical costs incurred by cancer patients.11-14 This study was undertaken in an attempt to provide more valid and generalizable information regarding the burden of informal caregiving for elderly patients with cancer. Our objectives were three-fold. First, we wanted to estimate the prevalence of informal caregiving among the elderly with cancer and identify the characteristics of the caregivers. Second, we wanted to estimate the additional number of hours of informal caregiving among the elderly with cancer with and without recent treatment as compared with those without a history of cancer. And finally, we wanted to estimate the annual economic costs associated with family caregiving in the United States.
Survey Data The Asset and Health Dynamics (AHEAD) study is a biennial longitudinal survey of elderly individuals born in 1923 or earlier designed to study health transitions in old age and their impact on individuals, families, and society.15 The initial cohort was selected to be representative of the approximately 21 million individuals age 70 and older living in a noninstitutionalized setting in the community (ie, not in a nursing home) in the United States. The overall response rate to the survey was 80%, resulting in a sample size of 7,443 subjects. The majority of respondents ages 70 to 79 were interviewed by telephone (74%), while most of those age 80 and older were interviewed in person (69%). Approximately 10% of subjects were either unable or unwilling to complete the AHEAD survey by themselves and a proxy respondent, usually a spouse (45%) or daughter (29%), was allowed to complete the survey for them. The baseline AHEAD survey collected data in 1993 on subjects health and functional status, sociodemographic characteristics, living situation, and the costs associated with their health care. Health status information included self-reported diagnoses of cancer, stroke, diabetes, heart disease, hypertension, lung disease, psychiatric problems, and arthritis. In particular, the items related to cancer included the following: (1) Has a doctor ever told you that you have cancer or a malignant tumor, excluding minor skin cancer? (2) If so, in what organ or part of your body did your most recent cancer start? (3) During the last 12 months, what sort of treatment have you received for your cancer? Presence of cognitive impairment consistent with dementia was assessed using a validated cognitive screening instrument.16 Functional status was evaluated based on respondents reported ability to perform activities of daily living (ADLs; eating, transferring, toileting, dressing, bathing, and walking across a room) and instrumental activities of daily living (IADLs; preparing meals, grocery shopping, making phone calls, taking medications, and managing money). This section of the interview also asked respondents to estimate the average number of days per week and the average number of hours per day that they received help with these activities in the prior month and to supply information on who was providing the caregiving. Sociodemographic information collected included subjects age, sex, race, education, marital status, and net worth. In addition to marital status, information was obtained on whether subjects were living alone or with someone else and, if so, whom. Since most respondents were retired, net worth (ie, total household assets minus total household debt), not household income, was used as the measure of their wealth.
Analysis of Data Because a significant percentage of respondents reported receiving no informal care in the month before the survey and the distribution of caregiving hours among recipients was highly skewed, it was necessary to use a two-part multivariable regression model.21,22 In the first part of the model, logistic regression was used to estimate the likelihood of receiving any informal caregiving for those with a history of cancer, with and without recent treatment, while controlling for those factors that have been previously shown to be associated with informal caregiving.18,21,23 These factors include the presence of chronic diseases, limitations in ADLs and IADLs, dementia, living arrangements, and respondents age, sex, race, education, marital status, and net worth. In the second part of the model, ordinary least squares regression was used to examine the association between a history of cancer with and without treatment with the natural logarithm of weekly informal caregiving hours for persons who received any care, again controlling for the same factors previously shown to be associated with informal caregiving. Lastly, the results from each part of the model were combined to obtain an estimate of the unconditional (ie, not conditioned on receipt of care) effect of a history of cancer with and without recent treatment on the weekly hours of informal caregiving.21,22 For ease of interpretation, regression results were retransformed into hours.24
Calculating the Cost of Informal Caregiving
Statistical Considerations
Characteristics of the Sample Of the 7,443 subjects who participated in the baseline AHEAD survey, 6,422 (86%) reported having had no history of cancer, 718 (10%) reported having had a history of cancer but not having received treatment in the last year, and 303 (4%) reported having had a history of cancer and having received treatment in the last year. Of note, when one considers that nursing home residents were not included in the baseline AHEAD sample, the prevalence of cancer in this sample (13,700 cases per 100,000 individuals) is relatively close to the national prevalence of cancer predicted by Surveillance, Epidemiology, and End Results data for all individuals age 70 and older (15,800 cases per 100,000 individuals).27 The characteristics of these three groups are listed in Table 1. Compared with subjects with no history of cancer, those with a history of cancer and recent treatment were more likely to be male and to have a history of heart disease but were less likely to have a history of arthritis (P < .05 for all comparisons).
Among the 1,021 subjects who reported having a history of cancer, the most common primary cancers included genitourinary cancers (26%), breast cancer (22%), gastrointestinal cancers (20%), gynecologic cancers (14%), and head and neck and lung cancers (10%). Among the 303 respondents who reported having received treatment for their cancer in the last year, 36% had received chemotherapy or hormonal therapy, 35% had undergone surgery (including biopsy), 26% had received radiation, and 23% reported having received "other" treatments.
Probability of Informal Caregiving and Characteristics of Caregivers
Among those 2,022 respondents classified as having received informal caregiving, the vast majority of informal caregiving was provided by either their spouses or children (including sons- and daughters-in-law) and not other relatives or unpaid nonrelatives. (Table 3). A significant percentage of subjects also received caregiving from more than one group of caregivers. Those with a history of cancer and recent treatment were more likely to report help from a spouse or child, although this difference was not statistically significant (P = .9).
Weekly Hours and Yearly Cost of Informal Caregiving Using data from both parts of the model, we found a significantly greater number of adjusted weekly hours of informal care among respondents reporting treatment of their cancer in the last year (Table 4). Those subjects who reported having had no history of cancer and a history of cancer but no treatment within the last year received an average of 6.9 and 6.8 hours of informal caregiving per week, respectively. In contrast, those subjects with a history of cancer and recent treatment received an average of 10.0 hours of informal caregiving per week. This difference in caregiving hours was statistically significant when compared with each of the other two groups (P < .05). Using an hourly wage of $8.17, the associated total yearly cost of informal caregiving for the elderly with recent cancer treatment was $4,200 as compared with $3,000 and $2,900 for those individuals without a history of cancer and with a history of cancer but without recent treatment. Accordingly, the additional yearly cost associated with cancer treatment was a minimum of $1,200. When the alternative wage rates for valuing informal caregiver time were used, the additional annual cost ranged from $900 to $1,700 per patient.
On the basis of data from a nationally representative sample, we observed that having a history of cancer and undergoing treatment in 1993 in elderly cancer patients was associated with both an increased probability and intensity of informal caregiving, whereas having only a history of cancer was not. In this population, treatment was associated with an 8% absolute increase in the probability of informal caregiving and an absolute increase of 3.1 in the average number of weekly caregiving hours, relative increases of 31% and 46%, respectively. Possible explanations for this increase in caregiving time in this group include increased morbidity from a cancer which is clinically significant enough to warrant recent treatment, from the treatment itself, or, as is probably the case for most individuals in this group, from some combination of the two. Using the average hourly wage of a home health aid as an estimate of the monetary value of caregiving time, the incremental average annual cost attributable to informal caregiving was $1,200. Assuming our sample is truly representative of the 21 million individuals age 70 and older living in the community in the United States, this translates into an annual cost to society of just over $1 billion. We also found that informal caregivers were almost always unpaid family members. As health care costs continue to spiral upward and the resources available for health care become increasingly constrained, payers and policy makers are becoming more and more interested in whether the benefits of particular health care interventions justify their added costs. Not surprisingly, this has resulted in attempts to better characterize the costs associated with medical interventions. To date, most of the work has focused on obtaining better estimates of the costs that are directly related to interventions (ie, direct medical costs) from the perspective of either the payer or the provider. However, the recent recommendation of the Panel on Cost-Effectiveness in Health and Medicine that cost-effectiveness analyses be performed from the societal perspective has renewed interest in obtaining estimates of the out-of-pocket and time costs (ie, direct nonmedical costs) incurred by patients and their families as a direct result of an intervention.3 Failure to account for such costs will bias cost-effectiveness analyses in favor of treatments that rely disproportionately on informal caregiving. To the best of our knowledge, this is the first study of informal caregiving in cancer patients to use data from a population-based, nationally representative sample. In fact, the data on informal caregiving costs attributable to cancer that are currently available in the literature are quite limited. Almost all of these studies used relatively small convenience samples drawn from either a single institution10,13,28 or state.11,12,14 In addition, many of these studies examined these costs in relatively narrow subgroups of patients. Not surprisingly, given their dependence on their families, many of these studies have focused on pediatric patients.10,13,28 Others have focused solely on patients with a single type of cancer (eg, breast cancer),11 undergoing a particular type of treatment (eg, outpatient chemotherapy),14 or in a particular phase of their illness (eg, terminal care).29-31 Although several of these studies included estimates of lost wages due to caregiving,10,13,14,28 only two have included estimates of the total cost of family caregiving time, which ranged from an average of $2,435 to $3,772 over a 3-month period.11,12 Of note, due to our ability to adjust for other factors that are known to influence the need for and intensity of informal caregiving, our study is the only one to isolate the additional caregiving associated with cancer and its recent treatment. The frequency and intensity with which elderly cancer patients undergoing treatment rely on their families for caregiving is substantial. Often forgotten or ignored, when viewed from both the societal and individual patient perspective, family caregiving is not an insignificant cost. We hope that by providing valid and representative quantitative data on the economic burden of informal caregiving, our study will allow policy makers to better assess the cost and quality trade-offs among the currently available caregiving options (eg, unpaid family care, paid home care, and skilled nursing facilities) for elderly cancer patients undergoing treatment. In addition to the economic cost of the time spent providing care, informal caregiving can also result in other "costs" to caregivers. In several studies, caregiving has been associated with increased levels of psychologic distress and depression,32-36 fatigue,37 and even shortened survival.38 Accordingly, we also hope that the results of our study will make clinicians more aware of the burdens that cancer treatment places on their elderly patients families and motivate them to identify those patients and caregivers in need of additional support. Our study also confirms the findings of many other studies regarding the characteristics of caregivers. As has been reported by others,11,12,14,30 we found that the caregivers of adult patients undergoing cancer treatment are usually spouses, sons and daughters, or sons- and daughters-in-law who are rarely paid. Interestingly, a history of cancer without recent treatment was not associated with an increase in informal care, which suggests that, in a population with other comorbid conditions and limitations in their functional status, the morbidity of a prior cancer and its past treatment does not seem to be severe enough to warrant additional caregiving. As the population ages and as more and more cancer care is transferred from the inpatient to the outpatient setting, interventions targeted at unpaid family caregivers will be needed to ease the economic, psychologic, and physical burdens of caregiving. There are several limitations of the AHEAD survey that likely resulted in an underestimate, rather than an overestimate, of caregiving time and cost. First, the AHEAD survey asked respondents to report the caregiving they received for all limitations in IADLs but only for those limitations in ADLs that they experienced "most of the time." Therefore, time spent providing infrequent help for ADLs was not captured by the AHEAD survey. Second, time spent by caregivers for activities outside of the scope of those covered by ADLs and IADLs (eg, transporting patients back and forth for radiation treatments) was not included in our analysis. Third, given the increasing number of elderly cancer patients and the continued efforts to contain costs by transferring care from the inpatient to the outpatient setting, it is very likely that caregiving time has increased, not decreased, since 1993. Fourth, the AHEAD sample excluded individuals residing in nursing homes whose families often provide unpaid care in addition to the care provided by nursing home staff. It is also important to point out that our analysis includes only the cost of caregiving time and does not include all of the other nonmedical direct costs associated with cancer treatment. For example, it does not include such out-of-pocket costs as those for transportation, nondurable supplies, nutritional supplements, specialized home-health equipment, or for lost wages or missed opportunities for promotion incurred by purposefully unemployed or underemployed caregivers. Because the sampling frame for the AHEAD survey was not restricted to patients with cancer, the numbers of subjects with a particular type of cancer undergoing a particular type of treatment were relatively small, thereby limiting our ability to investigate interactions in caregiving between various cancers and treatments. In addition, because the AHEAD survey included only individuals age 70 and older, our results should be applied with caution to groups of patients who are significantly younger. Finally, the amount of clinical information available regarding respondents history of cancer was relatively limited. Although we knew the primary site of their most recent cancer and the category of treatment they had received within the past year, we did not know their stage, whether they had a history of having more than one cancer and, if so, its primary site, the timing of their diagnosis and treatment relative to when they were surveyed, any of the details of the treatment received, whether the treatment received was primary treatment or was for recurrent or persistent disease, or whether treatment was intended to be curative or palliative. If we had had more subjects with cancer and had known more about their cancers and treatment, we would have been able to better characterize the caregiving needs of certain subgroups of patients. This population-based analysis of informal caregiving in the elderly confirms the significant burden that cancer treatment places on both families and society. These findings underscore the importance, when appropriate, of including valid estimates of the cost of informal caregiving when evaluating the cost-effectiveness of cancer treatments.
Supported by an unrestricted educational grant from Ortho Biotech, Raritan, NJ. During the time this work was completed, J.A.H. also received support from the American Cancer Society through an American Cancer Society Clinical Research Training Grant. The National Institute on Aging provided funding for the Asset and Health Dynamics Study, data from which were used in this analysis.
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Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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