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TREATING THE WHOLE PATIENT WITH CANCER: THE CRITICAL IMPORTANCE OF UNDERSTANDING
AND ADDRESSING THE TRAJECTORY OF MEDICAL FINANCIAL HARDSHIP

K Robin Yabroff, PhD,
K Robin Yabroff, PhD
Surveillance and Health Equity Science, American Cancer Society
, Atlanta, GA,
USA
Correspondence to: K. Robin Yabroff, PhD, American Cancer Society, 3380 Chastain
Meadows Pkwy NW Suite 200, Kennesaw, GA 30144, USA (e-mail:
robin.yabroff@cancer.org).
  https://orcid.org/0000-0003-0644-5572
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Ya-Chen Tina Shih, PhD,
Ya-Chen Tina Shih, PhD
Section of Cancer Economics and Policy, Department of Health Services Research,
University of Texas MD Anderson Cancer Center
, Houston, TX,
USA
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Cathy J Bradley, PhD
Cathy J Bradley, PhD
Colorado School of Public Health Administration, Department of Health Systems,
Management & Policy, University of Colorado Comprehensive Cancer Center
, Aurora, CO,
USA
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JNCI: Journal of the National Cancer Institute, djab211,
https://doi.org/10.1093/jnci/djab211
Published:
04 January 2022
Article history
Received:
29 October 2021
Accepted:
02 November 2021
Published:
04 January 2022

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   K Robin Yabroff, PhD, Ya-Chen Tina Shih, PhD, Cathy J Bradley, PhD, Treating
   the Whole Patient With Cancer: The Critical Importance of Understanding and
   Addressing the Trajectory of Medical Financial Hardship, JNCI: Journal of the
   National Cancer Institute, 2022;, djab211,
   https://doi.org/10.1093/jnci/djab211
   
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Issue Section:
Editorial

The costs of cancer treatment have grown dramatically over the past decades
(1-4). Among patients with health insurance coverage, cost-sharing, including
deductibles, copayments, and coinsurance, has also increased, which resulted in
increases in out-of-pocket burden that outpaced general inflation (1,4). As a
result, patients and their families may need to make trade-offs between paying
for their cancer care and basic household needs, such as food, housing, and
utilities. Patients may also delay or forgo recommended cancer care as well as
other needed medical services because they can no longer afford it. Thus,
screening for and addressing financial hardship prior to and throughout cancer
treatment is important for patients, providers, cancer centers, payers, and
state and federal health policy makers.

To date, most research evaluating financial hardship has been cross-sectional
and conducted in heterogeneous population-based samples of cancer survivors with
different diagnoses, survival times, and treatments or among samples of patients
receiving treatment within single institutions or geographic regions (5).
Studies of long-term cancer survivors are limited for informing interventions to
address financial hardship within cancer care settings.

In this issue of the Journal, the study by Shankaran and colleagues (6) makes a
valuable contribution to our understanding of medical financial hardship among
patients undergoing cancer treatment. The study enrolled a clinically
homogeneous sample of patients with metastatic colorectal cancer initiating
systemic treatment at National Cancer Institute Community Oncology Research
Program (NCORP) sites across the United States. Major financial hardship was
defined as debt accumulation, selling or refinancing a home, borrowing money
from family and/or friends, or 20% or more income decline during the 12 months
following study enrollment. Approximately 25% of patients reported major
financial hardship at 3 months, and by 12 months, nearly three-quarters (71.3%)
of patients reported hardship, highlighting the cumulative nature of this
trajectory. New debt (57.6%), 20% or more income decline (26.6%), and new loans
from family and/or friends (26.0%) were the largest contributors to the summary
measure at 12 months. Patients with annual household incomes of less than $100
000 and with total assets less than $100 000 were more likely to experience
hardship, compared with their counterparts with higher income and assets.

The study also adds to growing literature documenting adverse effects of
financial hardship on health, including worse health-related quality of life
(7,8). Patients who reported hardship at 3 months were more likely to report
lower social functioning and lower overall quality-of-life scores at 6 months,
controlling for these measures at 3 months. To date, few studies have assessed
the association of financial hardship with longer-term health outcomes, such as
recurrence and survival.

Study findings underscore the likelihood of financial hardship, even among
socioeconomically advantaged patients. At least 60% of patients with annual
incomes of $100 000 or more or assets $100 000 or more reported major financial
hardship within 12 months. Median annual income was $57 687 in 2016, the year
enrollment began for this study. Risk of hardship is surely greater for cancer
patients with annual incomes below the median. Furthermore, comprehensive health
insurance coverage is one of the strongest protections against financial
hardship. Yet, nearly all patients in this study had health insurance coverage
and still the vast majority reported major financial hardship, which suggests
having health insurance may no longer be sufficient to protect patients and
families from financial hardship and its adverse health sequelae.

How can findings from this study be used to improve cancer care delivery and
patient outcomes? Screening for medical financial hardship is critically
important. However, many providers and practices, including many NCORP
practices, use uninsurance at a single visit to screen patients (9). This
approach would have missed the majority of the metastatic colorectal cancer
patients who reported hardship in this study. Additionally, because financial
hardship is dynamic and often cumulative, screening should occur routinely. A
one-time screening at 3 months would have only identified 24.9% of patients who
had hardship but missed the additional 46.4% of patients who reported hardship
at 12 months in this study. Assessing “changes from baseline” can offer
additional insights on how hardship changes after the initiation of treatment.
Cancer care provider organizations have emphasized the importance of discussing
the cost of care with patients (10); we recommend routine and comprehensive
screening for financial hardship and social needs (11) using validated
instruments and documentation of referrals in electronic health records (Table
1).

Table 1.

Summary of recommendations for addressing medical financial hardship

Audience . Recommendation . Cancer care providers Conduct routine screening with
validated instruments at all visits Document referrals for financial hardship
and social needs and whether and how they are addressed Cancer centers Require
comprehensive screening throughout cancer treatment and connecting patients to
services Enhance partnerships with community safety net organizations Advocate
for health policies that benefit patients and their families Record reasons
eligible patients decline clinical trial participation and drop out
prematurely Collect information about financial hardship in clinical trials and
consider inclusion in adverse event reporting Health policy Increase options for
comprehensive health insurance coverage Implement caps on patient out-of-pocket
expenses Include financial hardship screening and connection with services as
quality measures Require assessment of patient financial hardship and social
needs as part of evaluation of value-based payment models Research and
surveillance Develop validated financial hardship instruments for use at the
point of care and integration in electronic health records Collect financial
information prior to diagnosis, potentially through data linkages Evaluate
interrelationship of financial hardship and social needs Assess associations of
medical financial hardship and quality of cancer care, including diagnostic and
treatment delays and completion of all recommended treatment and survivorship
care Evaluate short- and long-term health effects of medical financial hardship,
including health-related quality of life, cancer recurrence, and survival
following diagnosis Evaluate the economic, social, and health effects of patient
medical financial hardship on family and informal caregivers Conduct rigorous
evaluation of value-based payment models to inform care delivery and health
policy 

Audience . Recommendation . Cancer care providers Conduct routine screening with
validated instruments at all visits Document referrals for financial hardship
and social needs and whether and how they are addressed Cancer centers Require
comprehensive screening throughout cancer treatment and connecting patients to
services Enhance partnerships with community safety net organizations Advocate
for health policies that benefit patients and their families Record reasons
eligible patients decline clinical trial participation and drop out
prematurely Collect information about financial hardship in clinical trials and
consider inclusion in adverse event reporting Health policy Increase options for
comprehensive health insurance coverage Implement caps on patient out-of-pocket
expenses Include financial hardship screening and connection with services as
quality measures Require assessment of patient financial hardship and social
needs as part of evaluation of value-based payment models Research and
surveillance Develop validated financial hardship instruments for use at the
point of care and integration in electronic health records Collect financial
information prior to diagnosis, potentially through data linkages Evaluate
interrelationship of financial hardship and social needs Assess associations of
medical financial hardship and quality of cancer care, including diagnostic and
treatment delays and completion of all recommended treatment and survivorship
care Evaluate short- and long-term health effects of medical financial hardship,
including health-related quality of life, cancer recurrence, and survival
following diagnosis Evaluate the economic, social, and health effects of patient
medical financial hardship on family and informal caregivers Conduct rigorous
evaluation of value-based payment models to inform care delivery and health
policy 

Open in new tab
Table 1.

Summary of recommendations for addressing medical financial hardship

Audience . Recommendation . Cancer care providers Conduct routine screening with
validated instruments at all visits Document referrals for financial hardship
and social needs and whether and how they are addressed Cancer centers Require
comprehensive screening throughout cancer treatment and connecting patients to
services Enhance partnerships with community safety net organizations Advocate
for health policies that benefit patients and their families Record reasons
eligible patients decline clinical trial participation and drop out
prematurely Collect information about financial hardship in clinical trials and
consider inclusion in adverse event reporting Health policy Increase options for
comprehensive health insurance coverage Implement caps on patient out-of-pocket
expenses Include financial hardship screening and connection with services as
quality measures Require assessment of patient financial hardship and social
needs as part of evaluation of value-based payment models Research and
surveillance Develop validated financial hardship instruments for use at the
point of care and integration in electronic health records Collect financial
information prior to diagnosis, potentially through data linkages Evaluate
interrelationship of financial hardship and social needs Assess associations of
medical financial hardship and quality of cancer care, including diagnostic and
treatment delays and completion of all recommended treatment and survivorship
care Evaluate short- and long-term health effects of medical financial hardship,
including health-related quality of life, cancer recurrence, and survival
following diagnosis Evaluate the economic, social, and health effects of patient
medical financial hardship on family and informal caregivers Conduct rigorous
evaluation of value-based payment models to inform care delivery and health
policy 

Audience . Recommendation . Cancer care providers Conduct routine screening with
validated instruments at all visits Document referrals for financial hardship
and social needs and whether and how they are addressed Cancer centers Require
comprehensive screening throughout cancer treatment and connecting patients to
services Enhance partnerships with community safety net organizations Advocate
for health policies that benefit patients and their families Record reasons
eligible patients decline clinical trial participation and drop out
prematurely Collect information about financial hardship in clinical trials and
consider inclusion in adverse event reporting Health policy Increase options for
comprehensive health insurance coverage Implement caps on patient out-of-pocket
expenses Include financial hardship screening and connection with services as
quality measures Require assessment of patient financial hardship and social
needs as part of evaluation of value-based payment models Research and
surveillance Develop validated financial hardship instruments for use at the
point of care and integration in electronic health records Collect financial
information prior to diagnosis, potentially through data linkages Evaluate
interrelationship of financial hardship and social needs Assess associations of
medical financial hardship and quality of cancer care, including diagnostic and
treatment delays and completion of all recommended treatment and survivorship
care Evaluate short- and long-term health effects of medical financial hardship,
including health-related quality of life, cancer recurrence, and survival
following diagnosis Evaluate the economic, social, and health effects of patient
medical financial hardship on family and informal caregivers Conduct rigorous
evaluation of value-based payment models to inform care delivery and health
policy 

Open in new tab

These practices can be reinforced by cancer centers and community-based NCORP
sites, which can require that all providers conduct comprehensive financial
hardship screening from diagnosis throughout treatment and connect patients to
services when hardship is detected, to help address patient needs. These efforts
need to be consistently documented to allow for evaluation of their
effectiveness and sustainability. Cancer centers can support community
organizations that serve patients diagnosed with cancer and advocate for local
and national policy initiatives to improve patient access to health insurance
coverage and reduce financial exposure, such as caps on out-of-pocket costs.
These actions reduce financial barriers for patients and stabilize local safety
net organizations. Finally, given the critical role of cancer centers in
conducting clinical trials and efforts to ensure equitable trial participation
(12,13), more information about reasons for declining study enrollment or
premature dropout should be recorded. Additionally, with emerging evidence of
financial hardship among trial enrollees (14), financial hardship could be
considered an adverse event in the reporting and evaluation of novel cancer
therapies.

Policy solutions are needed to improve cancer care affordability, including
efforts to limit patient financial burden through more comprehensive health
insurance coverage options, caps on out-of-pocket expenses, and slowing the
growth in cancer treatment costs. Payers, especially state and federal payers,
can require documentation of routine screening of financial hardship and service
referrals as quality measures (15). The Center for Medicare & Medicaid
Innovation has the authority to develop, implement, and test payment models with
the goal of providing better care, better health, and lower cost. We recommend
adding measures of patient out-of-pocket costs and financial hardship to the
list of outcomes that determine the effectiveness of payment models, including
the Oncology Care Model and Medicaid demonstration projects. We also recommend
that private payers assess patient financial hardship and evaluate its effects
when they develop, test, and evaluate models of care.

Study findings also have important implications for research and surveillance.
The patients included in this study were relatively advantaged
socioeconomically, highlighting the need for more research in population-based
samples that also represent socioeconomically disadvantaged patients, as they
are more likely to report medical financial hardship (16,17) and other social
needs (18). Financial hardship and social needs have independent adverse effects
on access to care (19), yet little is known about how households make trade-offs
between health care and other vital needs. Also, little is known about patients’
financial situations prior to cancer diagnosis or their longer-term health
outcomes, including lasting financial effects for informal caregivers and/or
family. This information is critically important for identifying patients who
are financially vulnerable prior to cancer treatment who may need early and
ongoing assistance. Prospective longitudinal data collection with patient
reports and data linkages, such as those with credit report agencies and health
insurance claims data, will be especially useful. Development of validated
instruments, sensitive to changes in financial standing, that can be used at the
point of care and integrated in electronic health records is also needed.

Medical financial hardship following cancer diagnosis and subsequent treatment
is often considered a condition only affecting households without health
insurance coverage or with very low income. This study demonstrates that
financial hardship is widespread and may be experienced by many Americans newly
diagnosed with cancer—approximately 1.9 million people in 2021 alone (20).
Financial hardship will persist and perhaps worsen until it is addressed by
providers, cancer centers, payers, and policy makers. Future interventions and
policy initiatives require rigorous research to assess their effectiveness and
sustainability to ensure that the remarkable advancements in cancer care are
widely accessible without inflicting financial ruin for patients and their
families.


FUNDING

Dr Shih acknowledges funding from the National Cancer Institute (R01CA207216,
R01CA225647) and Health Care Services Corporation/BCBSTX. Dr Bradley received
funding from the University of Colorado Cancer Center Support Grant
(P30CA046934).


NOTES

Role of the funders: The funders had no role in the writing of this editorial or
the decision to submit it for publication.

Disclosures: Y-CTS received consulting fees, travel, and accommodations for
serving on a grants review panel for Pfizer Inc and an advisory board for
AstraZeneca in 2019. KRY serves on the Flatiron Health Equity Advisory Board.
CJB reports no disclosures.

Author contributions: Writing- original draft: KRY. Writing- reviewing and
editing: KRY, CB, Y-CTS.


DATA AVAILABILITY

Not applicable.


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© The Author(s) 2022. Published by Oxford University Press. All rights reserved.
For permissions, please email: journals.permissions@oup.com
This article is published and distributed under the terms of the Oxford
University Press, Standard Journals Publication Model
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SEE ALSO

 * COMPANION ARTICLE
   
   * S1417CD: A Prospective Multicenter Cooperative Group-Led Study of Financial
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