Patient Economic Burden Associated With Cancer Care
This is an excerpt of the publication above, edited by the author of the blog.
JNCI: Journal of the National Cancer Institute
K Robin Yabroff, PhD, Angela Mariotto, PhD, Florence Tangka, PhD, Jingxuan Zhao, MPH, Farhad Islami, MD, PhD, Hyuna Sung, PhD, Recinda L Sherman, PhD, S Jane Henley, MSPH, Ahmedin Jemal, DVM, PhD, Elizabeth M Ward, PhD
Published: 26 October 2021
Key messages (edited by the author of the blog)
National patient economic burden, including out-of-pocket and time costs, associated with cancer care was projected to be $21.1 billion in 2019.
- We found that nationally, time costs represent approximately 23% ($4.9 billion/$21.1 billion) of the patient economic burden.
- For all cancers combined, patient out-of-pocket costs were projected to be $16.22 billion, with highest costs for breast ($3.14 billion), prostate ($2.26 billion), colorectal ($1.46 billion), and lung ($1.35 billion) cancers, reflecting the higher prevalence of these cancers.
- Annual time costs in 2019 were projected to be $4.87 billion for all cancers combined, with breast ($1.11 billion) and prostate ($1.04 billion) cancers accounting for almost one-half of time costs.
- In 2019, the total patient economic burden associated with cancer care was projected to be $21.1 billion.
Across all cancer sites, annualized net out-of-pocket costs for medical services and prescriptions drugs covered through a pharmacy benefit among adults aged 65 years and older were
- highest in the initial ($2200 and $243, respectively) and end-of-life phases ($3823 and $448, respectively) and
- lowest in the continuing phase ($466 and $127, respectively), with substantial variation by cancer site.
- Out-of-pocket costs were generally higher for patients diagnosed with later-stage disease.
- Net annual time costs associated with cancer were $304.3 (95% confidence interval = $257.9 to $350.9)
and $279.1 (95% confidence interval = $215.1 to $343.3) for adults aged 18–64 years and ≥65 years, respectively,
with higher time costs among more recently diagnosed survivors.
We found substantial variation in the pattern and magnitude of net annualized patient out-of-pocket costs by cancer site from the SEER-Medicare data, reflecting differences in treatment intensity and duration and average survival.
- For example, our study shows that Medicare beneficiaries aged 65 years and older, newly diagnosed with CML, might expect more than $4000 in out-of-pocket costs associated with cancer in the first year following diagnosis and
- more than $3000 annually in the following years, due largely to ongoing maintenance therapy.
Medicare beneficiaries with breast cancer might expect out-of-pocket costs associated with cancer closer to $2400 in the first year after diagnosis and approximately $550 annually afterwards.
All cancer survivors would experience net annual time cost burdens of approximately $300.
We found that patient economic burden associated with cancer care is substantial, both nationally and for individual cancer survivors.
Findings reported here can inform patient and provider understanding about expected costs of care.
We found that patient economic burden associated with cancer care is substantial, both nationally and for individual cancer survivors.
Findings reported here can inform patient and provider understanding about expected costs of care.
Abstract
Background
The American Cancer Society, National Cancer Institute, Centers for Disease Control and Prevention, and North American Association of Central Cancer Registries provide annual information about cancer occurrence and trends in the United States.
Part 1 of this annual report focuses on national cancer statistics. This study is part 2, which quantifies patient economic burden associated with cancer care.
Methods
We used complementary data sources, linked Surveillance, Epidemiology, and End Results-Medicare, and the Medical Expenditure Panel Survey to develop comprehensive estimates of patient economic burden, including out-of-pocket and patient time costs, associated with cancer care.
The 2000–2013 Surveillance, Epidemiology, and End Results-Medicare data were used to estimate net patient out-of-pocket costs among adults aged 65 years and older for the initial, continuing, and end-of-life phases of care for all cancer sites combined and separately for the 21 most common cancer sites.
The 2008–2017 Medical Expenditure Panel Survey data were used to calculate out-of-pocket costs and time costs associated with cancer among adults aged 18–64 years and 65 years and older.
Results
Across all cancer sites, annualized net out-of-pocket costs for medical services and prescriptions drugs covered through a pharmacy benefit among adults aged 65 years and older were
- highest in the initial ($2200 and $243, respectively) and end-of-life phases ($3823 and $448, respectively) and
- lowest in the continuing phase ($466 and $127, respectively), with substantial variation by cancer site.
- Out-of-pocket costs were generally higher for patients diagnosed with later-stage disease.
- Net annual time costs associated with cancer were $304.3 (95% confidence interval = $257.9 to $350.9)
and $279.1 (95% confidence interval = $215.1 to $343.3) for adults aged 18–64 years and ≥65 years, respectively,
with higher time costs among more recently diagnosed survivors. - National patient economic burden, including out-of-pocket and time costs, associated with cancer care was projected to be $21.1 billion in 2019.
Conclusions
This comprehensive study found that the patient economic burden associated with cancer care is substantial in the United States at the national and patient levels.
National patient economic burden, including out-of-pocket and time costs, associated with cancer care was projected to be $21.1 billion in 2019.
FULL VERSION
Each year, the American Cancer Society, the National Cancer Institute, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries collaborate to provide updated information about cancer occurrence and trends by cancer site, sex, race and ethnicity , and age in the United States.
Part 1 of this annual report focuses on national cancer statistics and highlights trends in stage-specific survival for melanoma of the skin ( 1). This study is part 2 of the report and addresses patient economic burden associated with cancer in the United States.
Historically, cancer has been one of the most expensive medical conditions to treat (2), and spending has increased in recent years (3) due in part to advances in cancer treatment, including targeted therapies, immunotherapies, advanced imaging, and supportive care; longer treatment durations; and more treatment combinations.
Many people who have received a cancer diagnosis (cancer survivors) receive medical care directly related to their cancer during the initial period after diagnosis and for some, recurrence or new primaries, and at the end-of-life (EOL) (4–6).
Many receive additional medical care as a result of late and lasting effects of disease and its treatment (4–6).
Cancer survivors and their families increasingly face high out-of-pocket costs for their care (3,7,8), including patient cost-sharing through higher deductibles, copayments, and coinsurance (9–11).
In the absence of charity care, families without health insurance or with limited coverage may be responsible for the entire cost of care (12,13).
Medical financial hardship is increasingly common, with many cancer survivors reporting difficulty paying medical bills, high levels of financial distress, and delaying care or forgoing care altogether because of cost (14).
In addition to out-of-pocket expenses, cancer survivors also spend time traveling to and from care and waiting for and receiving care, which represents time not spent pursuing other activities, including work and leisure (15–18).
This time spent receiving medical care (“patient time cost”) is referred to as an opportunity cost by health economists.
Prior research has shown that patient time costs can be substantial (15–17) and can result in additional economic burdens for cancer survivors.
Academic health economists have long recommended including these time costs in cost-effectiveness analyses of medical interventions (19,20).
Estimates of patient out-of-pocket and time costs may also be useful for both providers and patients as part of informed decision-making.
Prior research estimating out-of-pocket costs in cancer survivors was limited by lack of detail on cancer site and stage at diagnosis (21,22).
Similarly, most prior research estimating patient time costs has been limited by a lack of information for adults aged 18–64 years, who are not age-eligible for Medicare coverage (15,16).
In this study, we build on and extend prior research estimating health care costs associated with cancer by phase of care using the Surveillance, Epidemiology, and End Results (SEER) registry data linked with Medicare enrollment and claims data (SEER-Medicare) to provide detailed estimates of out-of-pocket costs (4,6,23,24) by cancer site and stage for adults aged ≥65 years, and the Medical Expenditure Panel Survey (MEPS) data to provide out-of-pocket (21) and patient time costs (17) stratified by age group (18–64 years and ≥65 years), with all insurance coverage types.
These data sources are complementary, and, to the extent possible, we take advantage of the populations included and level of clinical detail to provide comprehensive information about patient economic burden associated with cancer.
Methods
See the original publication
Results
Patient Responsibility and Net Out-of-Pocket Cost Estimates From SEER-Medicare Data
During 2007–2013, more than 800 000 newly diagnosed patients with cancer aged 65 years and older contributed to the initial phase of care, approximately 1 317 000 to the continuing phase, and approximately 437 000 to the EOL phase for medical services (Medicare Part A and Part B) (Table 1).
The number of newly diagnosed patients with cancer and controls contributing to each phase of care by cancer site for prescription drugs covered through a pharmacy benefit was smaller (Supplementary Table 1, available online), because not all Medicare beneficiaries elected to enroll in Part D for prescription drug coverage.
Table 1. — Number of cancer patients aged 65 years and older, with Medicare Fee-for-Service Part A and Part B, SEER-Medicare 2007–2013a
Annualized Net Patient Out-of-PocketCostsby Cancer Site and Phase of Care. Annualized net patient out-of-pocket costs by cancer site and phase of care were calculated from the net patient responsibility estimates reported in Supplementary Table 2 (available online).
Averaged across all cancer sites, out-of-pocket costs associated with cancer for medical services were highest in the initial ($2200) and EOL ($3823) phases and lowest in the continuing phase ($466), following a “U” or “J” shaped curve (Table 2).
By cancer site, out-of-pocket costs for medical services were highest in the initial and end-of life phases for
- acute myeloid leukemia ($6093 and $7039, respectively) and brain cancer ($5751 and $5901, respectively) and
- in the continuing phase for myeloma ($1532), pancreatic cancer ($1083), and acute myeloid leukemia ($1056).
Table 2. — Net annualized patient out-of-pocket costs associated with cancer by phase of care, SEER-Medicare 2007–2013a,b,c
Out-of-pocket costs for prescription medications covered through a pharmacy benefit followed the same pattern overall by phase of care (initial = $243, EOL = $448, and continuing = $127), with some differences by cancer site (Table 2; Supplementary Table 3, available online).
By cancer site, out-of-pocket costs were highest in the initial, continuing, and EOL phases for chronic myeloid leukemia (CML; $2456, $2341, and $946, respectively) and myeloma ($2576, $1593, and $1818, respectively).
Notably, annualized out-of-pocket costs by phase of care for CML and myeloma were less consistent with a “U-shaped” curve by phase of care.
Annualized Net Patient Out-of-Pocket Costs by Cancer Site, Phase of Care, and Stage at Diagnosis. Across all cancer sites, annualized net patient out-of-pocket costs for medical services were lowest for patients originally diagnosed with localized disease compared with regional or distant disease (Table 3; patient responsibility estimates are found in Supplementary Table 4, available online).
In the initial phase of care, annualized costs were $1694, $3194, and $3540 for cancers diagnosed with localized, regional, or distant disease, respectively; differences in out-of-pocket costs between localized and distant stage at diagnosis were greatest for bladder, colorectal, non-small cell lung cancer (NSCLC), oral cavity or pharynx, and stomach cancers.
Table 3. — Net annualized patient out-of-pocket costs for medical services and prescription drugs by phase of care and stage at diagnosis, SEER-Medicare 2007–2013a,b,c
Annualized net patient out-of-pocket costs for medical services for all cancer sites combined were higher in the EOL phase of care than in the initial phase of care within stage at diagnosis: $2868 vs $1694, $3604 vs $3194, and $4526 vs $3540 for cancers diagnosed with localized, regional, or distant disease, respectively (Table 3).
Differences in out-of-pocket costs between localized and distant stage at diagnosis in the EOL phase of care were greatest for bladder cancer, colorectal cancer, NSCLC, and melanoma.
Out-of-pocket costs in the continuing phase were also generally higher among patients diagnosed with later stage disease (Supplementary Table 5, available online).
Annual Net Patient Out-of-Pocket and Time Costs From MEPS Data
Characteristics of cancer survivors and adults without a cancer history from the MEPS are shown in Table 4. Cancer survivors in both age groups (18–64 years and ≥65 years) were more likely to be older, non-Hispanic White, have at least some college education, and have more MEPS priority conditions than adults without a cancer history. The most common cancer diagnoses among survivors were breast and prostate cancers (data not shown). Most cancer survivors were diagnosed 6 or more years before the survey, with fewer cancer survivors diagnosed within 2 years before the survey.
Table 4. — Characteristics of cancer survivors and adults without a cancer history by age group, MEPS, 2008–2017
Net Annual Patient Out-of-PocketCosts. Annual patient out-of-pocket spending for medical services and prescription drugs covered through a pharmacy benefit were higher for cancer survivors than for adults without a cancer history (Table 5).
Net annual out-of-pocket costs (95% confidence interval [CI]) associated with cancer were higher among adults aged 18–64 years than adults aged 65 years and older for medical services ($232.7 [$173.2 to $292.3] vs $97.7 [$11.5 to $184.0]) and prescription drugs ($87.4 [$62.0 to $112.8] vs $67.0 [$31.4 to $102.7]), yielding ratios of 2.38 to 1 and 1.30 to 1, respectively. Overall, net annual out-of-pocket costs were higher in the younger ($327.4, 95% CI = $260.0 to $394.9) than in the older group ($173.4, 95% CI = $72.4 to $274.4).
Table 5. Annual out-of-pocket costs, by cancer history and age group, MEPS, 2008–2017
Net Annual Patient Time Costs. Cancer survivors in both age groups (18–64 years and ≥65 years) were more likely to have overnight hospitalizations, emergency room visits, ambulatory surgeries, provider office-based or hospital outpatient visits, chemotherapy, and radiation therapy than adults without a cancer history (Table 6; Supplementary Table 5, available online).
Among adults with these services, cancer survivors in both age groups also had greater service frequency (Table 6; Supplementary Table 6, available online) and spent more time receiving care than their counterparts without a cancer history (Supplementary Table 7, available online).
Net annual mean time costs associated with cancer (95% CI) were $304.3 ($257.9 to $350.9) for adults aged 18–64 years, and $279.1 ($215.1 to $343.3) for adults aged 65 years and older.
In both age groups, hospitalizations and office visits were the services with the largest contribution to the overall time costs and accounted for the most of the net time costs.
Table 6. — Annual medical service use and patient time costs, by cancer history and age group, MEPS, 2008–2017a,b
Out-of-pocket and patient time costs among cancer survivors from the MEPS stratified by time since diagnosis (ie, ≤2 years, 2–5 years, 6–10 years, >10 years) are shown in Figure 1.
Among cancer survivors in both age groups, out-of-pocket costs and patient time costs were highest among those who were more recently diagnosed and were lowest among those diagnosed 6 years or more before the MEPS survey.
In adults aged 18–64 years, mean annual out-of-pocket costs were $1560 among those diagnosed within 2 years; $1074, diagnosed 2–5 years; $947, diagnosed 6–10 years; and $871, diagnosed more than 10 years before the survey (Figure 1, A). Annual patient time costs followed a similar pattern, with highest costs among those diagnosed within 2 years ($1229), followed by 2–5 years ($566), 6–10 years ($402), and more than 10 years ($432) before the survey (Figure 1, B).
Figure 1
Among the group aged 65 years and older, the highest annual out-of-pocket costs were $1854 among those diagnosed within 2 years and approximately $1600 for all other time since diagnosis categories (Figure 1, C).
Annual patient time costs in the older age group were highest ($1623) among those diagnosed within 2 years of the survey and more similar (approximately $930) in all other years (Figure 1, D).
Net National Patient Economic Burden Associated With Cancer Care in 2019
Net national economic burden associated with cancer care for 2019 for all cancers combined and by selected cancer sites are shown in Table 7. One-year and 5-year relative survival by cancer site and age group are shown in Supplementary Table 8 (available online), and the underlying prevalence projections by cancer site, age group, and phase of care are shown in Supplementary Table 9 (available online).
Prevalence projections were then combined with net out-of-pocket costs for medical services and prescription drugs by site and phase of care from SEER-Medicare (Table 2), with adjustments for greater net out-of-pocket spending in the population younger than 65 years from the MEPS (2.38 and 1.30 for medical services and prescription drugs, respectively; Table 5) and time cost estimates by age group (Table 6).
For example, in the initial phase of care for all cancer sites combined, net annualized out-of-pocket costs were $2200 and $243 for medical services and prescription drugs for patients aged 65 years and older, respectively, and time costs were $279.
Corresponding adjustments to the net out-of-pocket cost estimates for greater spending in the younger population yielded $5240 and $316 for medical services and prescription drugs for patients younger than 65 years, respectively, and time cost estimates of $304.
Table 7 — Net patient economic burden associated with cancer in the United States in 2019
For all cancers combined, patient out-of-pocket costs were projected to be $16.22 billion, with highest costs for breast ($3.14 billion), prostate ($2.26 billion), colorectal ($1.46 billion), and lung ($1.35 billion) cancers, reflecting the higher prevalence of these cancers (Supplementary Table 9, available online).
Annual time costs in 2019 were projected to be $4.87 billion for all cancers combined, with breast ($1.11 billion) and prostate ($1.04 billion) cancers accounting for almost one-half of time costs.
In 2019, the total patient economic burden associated with cancer care was projected to be $21.1 billion.
In 2019, the total patient economic burden associated with cancer care was projected to be $21.1 billion.
Discussion
We found substantial variation in the pattern and magnitude of net annualized patient out-of-pocket costs by cancer site from the SEER-Medicare data, reflecting differences in treatment intensity and duration and average survival.
For example, our study shows that Medicare beneficiaries aged 65 years and older, newly diagnosed with CML, might expect more than $4000 in out-of-pocket costs associated with cancer in the first year following diagnosis and more than $3000 annually in the following years, due largely to ongoing maintenance therapy.
Medicare beneficiaries with breast cancer might expect out-of-pocket costs associated with cancer closer to $2400 in the first year after diagnosis and approximately $550 annually afterwards.
All cancer survivors would experience net annual time cost burdens of approximately $300.
This study is the first, to our knowledge, to report nationally representative estimates from the MEPS for both net annual patient out-of-pocket and time costs associated with cancer-key components of patient economic burden.
We found that nationally, time costs represent approximately 23% ($4.9 billion/$21.1 billion) of the patient economic burden, as shown in Table 7.
… nationally, time costs represent approximately 23% ($4.9 billion/$21.1 billion) of the patient economic burden …
Academic health economists have long recommended that patient time costs be included in cost-effectiveness analyses ( 19, 20), but few studies have included them, in part, because these data are not routinely available.
Exclusion of patient time costs from cost-effectiveness analyses can bias results to interventions that place a greater burden on patients and their families ( 45). Aspects of patient time, including traveling to and from care, may also serve as a barrier to care ( 46).
Detailed data by cancer site and phase of care for adults younger than 65 years are not available from SEER-Medicare, although consistent with our findings from the MEPS reported here, studies conducted in managed care settings suggest that costs of care related to cancer are generally higher among younger patients and survivors than in older populations ( 55–57).
Because of limitations in the availability of comprehensive data for newly diagnosed cancer patients in the younger age group, we could not directly create phase of care-specific estimates for multiple cancer sites for patients and survivors younger than 65 years.
Instead, we used estimates from the MEPS data, which are available for both age groups, to reflect higher out-of-pocket spending in cancer patients and survivors younger than 65 years.
Despite this adjustment, our phase of care and national estimates may understate out-of-pocket costs for adults younger than 65 years.
Additionally, the detailed cost information in SEER-Medicare fee-for-service claims is not available for patients enrolled in Medicare Advantage ( 58), private managed care plans that represented approximately 30% of older Medicare beneficiaries during the study period ( 59).
As encounter data for Medicare Advantage enrollees become available through SEER-Medicare, additional research examining any differences in treatment intensity is warranted.
Medicare Part A and Part B claims contain information about patient responsibility, but patient out-of-pocket costs, a component of patient responsibility, are not reported separately in claims.
We used information from the MEPS to calculate patient out-of-pocket costs as a percentage of patient responsibility and applied this percentage to patient responsibility amounts from SEER-Medicare.
Out-of-pocket costs are available directly from Medicare Part D, however. Additionally, out of-pocket cost estimates from SEER-Medicare are for patients with insurance coverage and may not be generalizable to experiences of adults without health insurance coverage or who are underinsured.
Our estimates of out-of-pocket costs from SEER-Medicare are not treatment specific, and the expected costs of treatment may influence informed decision making, such as the choice of oral vs infusion therapies. The MEPS does not collect information about cancer stage at diagnosis, treatment(s), or other clinical characteristics.
Exact cancer diagnosis date or date of death for adults who died is unavailable in MEPS, and as a result, we could evaluate total out-of-pocket and time costs only by year since diagnosis and not by phase of care. As a result, our MEPS out-of-pocket cost estimates are not directly comparable with SEER-Medicare out-of-pocket estimates by phase of care, although they can both be combined with cancer prevalence in a specific year to estimate annual costs.
There were insufficient numbers of cancer survivors in the MEPS to estimate out-of-pocket and time costs separately for multiple cancer sites; instead, we report summary measures overall, for all cancer survivors.
The majority of cancer survivors in the MEPS are reporting use and spending many years following their cancer diagnosis, and estimates may not fully reflect experiences of new diagnosed patients or those at the end of life when treatment intensity and out-of-pocket spending are higher. Thus, our out-of-pocket and patient time cost estimates from the MEPS likely understate these costs.
Despite these limitations, this article provides the most comprehensive estimates of patient economic burden associated with cancer, including out-of-pocket and time costs, in the United States published to date.
We found that patient economic burden associated with cancer care is substantial, both nationally and for individual cancer survivors. Findings reported here can inform patient and provider understanding about expected costs of care.
Funding
No specific funding was provided for this research.
Notes
Role of the funder: Not applicable.
Disclosures: Authors declare no conflicts of interest.
Author contributions: All authors (KRY, AM, FT, JZ, FI, HS, RLS, JH, AJ, EMW) contributed to the conceptualization of the study and the writing and review of the manuscript. KRY wrote the original draft and KRY and AM made decisions about methodology with the SEER-Medicare data and KRY and JZ made decisions about methodology with the MEPS data.
Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the American Cancer Society, Centers for Disease Control and Prevention, the National Cancer Institute, or the North American Association of Central Cancer Registries.
Data Availability
The linked SEER-Medicare data are available through request from the National Cancer Institute. The Medical Expenditure Panel Survey (MEPS) data are publicly available from the Agency for Healthcare Research and Quality website.
References
See the original publication.
Originally published at https://academic.oup.com.
