SlideShare a Scribd company logo
FOCUS ON QUALITY
originalcontribution
Conversations About Financial Issues in Routine
Oncology Practices: A Multicenter Study
Rahma Warsame, MD1
; Cassie C. Kennedy, MD1
; Ashok Kumbamu, PhD1
; Megan Branda, MS2
; Cara Fernandez1
; Brittany Kimball, MD3
;
Aaron L. Leppin, MD1
; Thomas O’Byrne, MAS1
; Aminah Jatoi, MD1
; Heinz-Josef Lenz, MD4
; and Jon C. Tilburt, MD1
QUESTION ASKED: What are the baseline frequency,
content, dynamics, and patterns of cost conversations
in academic medical oncology across tumor types?
SUMMARY ANSWER: Cost conversations occurred
28% of the time, lasted shorter than 2 minutes on
average, and were verbally acknowledged by the
provider (physician or nurse practitioner) 60% of the
time and acted upon 25% of the time. The major
themes of the content related to the following: insurance
eligibility/process, work insecurity, cost of drugs, cost
used as tool to influence medical decision making,
health care–specific costs, and social determinants of
health. Contingency planning was the most common
strategy used by clinicians to mitigate treatment-related
costs or determine out-of-pocket costs.
WHAT WE DID: We performed qualitative thematic
analysis of 529 unique patient encounters from two
National Cancer Institute–designated cancer centers
and an academic-led county safety-net hospital that
were audio recorded prospectively during a three-site
communication study.
BIAS, CONFOUNDING FACTORS: We did not capture
nonverbal communications, which may have limited
our understanding of the interaction between pro-
viders and their patients and families/caregivers. We
also did not include more than one clinic visit per
patient, so cost may have been addressed before or
after our recorded visit. Incidence of cost discus-
sions may have been underestimated, because prior
conversations may have addressed the cost is-
sue. Although this was a multicenter study, African
Americans or Asians comprised only 10% of the study
population, and different demographic groups may
face different issues. In addition, all three centers were
academic based, where the resources for financial
support may differ compared with community- or
hospital-based practices.
REAL-LIFE IMPLICATIONS: This study included multiple
tumor types and demonstrates the spectrum of cost
issues discussed by patients or families/caregivers with
their clinicians, and the context of those conversations
suggests that opportunities exist to address and improve
discussion of cost in routine oncology practice. The
contingency planning demonstrated by clinicians
showcases the dedication of oncologists in trying to
manage costs for their patients in their hurried practices
and the obscurity of costs altogether. Despite willing-
ness of clinicians and patients to engage in discussions,
a multidisciplinary approach will likely be needed to
systematically address financial issues in practice.
CORRESPONDING AUTHOR
Rahma Warsame, MD, Division of Hematology, Mayo Clinic, 200
First St SW, Rochester, MN 55905; e-mail: warsame.rahma@
mayo.edu.
Author affiliations
and disclosures are
available with the
complete article at
jop.ascopubs.org.
Accepted on April 5,
2019 and published at
jop.ascopubs.org on
June 4, 2019:
DOI https://doi.org/10.
1200/JOP.18.00618
Volume 15, Issue 8 451
FOCUS ON QUALITY
originalcontribution
Conversations About Financial Issues in Routine
Oncology Practices: A Multicenter Study
Rahma Warsame, MD1
; Cassie C. Kennedy, MD1
; Ashok Kumbamu, PhD1
; Megan Branda, MS2
; Cara Fernandez1
; Brittany Kimball, MD3
;
Aaron L. Leppin, MD1
; Thomas O’Byrne, MAS1
; Aminah Jatoi, MD1
; Heinz-Josef Lenz, MD4
; and Jon C. Tilburt, MD1
abstract
PURPOSE To describe the frequency, content, dynamics, and patterns of cost conversations in academic
medical oncology across tumor types.
PATIENTS AND METHODS We reviewed 529 audio recordings between May 3, 2012, to September 23, 2014,
from a prospective three-site communication study in which patients at any stage of management for any solid
tumor malignancy were seen in routine oncology appointments. Recordings were deidentified, transcribed, and
flagged for any mention of cost. We coded encounters and used qualitative thematic analysis.
RESULTS Financial issues were discussed in 151 (28%) of 529 recordings. Conversations lasted shorter than
2 minutes on average. Patients/caregivers raised a majority of discussions (106 of 151), and 40% of cost
concerns raised by patients/caregivers were not verbally acknowledged by clinicians. Social service referrals
were made only six times. Themes from content analysis were related to insurance eligibility/process, work
insecurity, cost of drugs, cost used as tool to influence medical decision making, health care–specific costs, and
basic needs. Financial concerns influenced oncology work processes via test or medication coverage denials,
creating paperwork for clinicians, potentially influencing patient involvement in trials, and leading to medication
self-rationing or similar behaviors. Typically, financial concerns were associated with negative emotions.
CONCLUSION Financial issues were raised in approximately one in four academic oncology visits. These brief
conversations were usually initiated by patients/caregivers, went frequently unaddressed by clinicians, and
seemed to influence medical decision making and work processes and contribute to distress. Themes identified
shed light on the kinds of gaps that must be addressed to help patients with cancer cope with the rising cost
of care.
J Oncol Pract 15:e690-e703. © 2019 by American Society of Clinical Oncology
INTRODUCTION
The cost of cancer care in the United States is pro-
jected to balloon to $157 billion by 2020.1,2
This cost is
transferred to patients, resulting in financial burden,
increased declarations of bankruptcy, decreased ad-
herence to treatment, poorer quality of life, and worse
survival.3,4
Although aware of financial issues, oncol-
ogists feel ill equipped to address them.5-8
In an effort
to aid oncologists in addressing cost, the ASCO Value
Framework highlights the toxicity and quality of life
impact of care costs,9,10
and the National Compre-
hensive Cancer Network (NCCN) evidence blocks now
take cost into consideration.11
Although these initia-
tives may not yet be suited for routine clinical use and
may focus too heavily on comparing costs of two
treatments (ASCO) or on costs of medications (NCCN),
they highlight the need for specificity about how cli-
nicians and patients broach this subject.
Little is known about the actual content of discussions
about costs and other financial issues between pa-
tients and providers in real-world practice. Without this
insight, it is difficult to offer improved training or devise
interventions to adequately address costs in oncology
care. Although the landscape of addressing value and
cost of care in oncology is rapidly evolving, to shed
some light on the broad range of economic stressors in
cancer care and begin to gain insights into what to do
about them, we turned to clinical conversations in real
time. In this study, we sought to describe the baseline
frequency, content, dynamics, and patterns of cost
conversations in diverse academic settings using
qualitative and quantitative methods.
ASSOCIATED
CONTENT
Appendix
Author affiliations
and support
information (if
applicable) appear
at the end of this
article.
Accepted on April 5,
2019 and published at
jop.ascopubs.org on
June 4, 2019:
DOI https://doi.org/10.
1200/JOP.18.00618
e690 Volume 15, Issue 8
PATIENTS AND METHODS
Design
We analyzed audio recordings of clinical interactions from
three different oncology clinics. Recordings were collected
as part of a three-site prospective parent study.12
This study
was approved by the Mayo Clinic and University of
Southern California institutional review boards. Encounters
in the parent study were routine oncology visits between
patients at any stage of the cancer continuum (new di-
agnosis, active therapy, surveillance, or end stage) and
their clinicians. Participants agreed to have their encoun-
ters recorded without knowledge of the hypotheses of the
study (eg, only that this was a communication study). Other
details about the parent study were published previously.12
For this analysis, we characterized communication about
cost operationalized as any discussion of financial issues in
routine oncology encounters between clinicians and their
patients/lay caregivers.
Participants
Clinicians were eligible if they practiced at least once per
week. They were recruited from three different sites: an
Upper Midwest National Cancer Institute–designated
cancer center, a Southern California National Cancer
Institute–designated university cancer center, and a
Southern California county hospital site affiliated with
that cancer center that functions as a safety-net hospital.
Clinicians provided written consent and completed a base-
line survey that included demographic and professional
characteristics.
Patients were eligible if they had a biopsy-proven solid
tumor, were age 18 years or older, and spoke English or
Spanish. They provided written consent. Hospice patients
were excluded. Accompanying family members, lay care-
givers, or companions provided verbal consent. Patients
completed baseline surveys including demographic char-
acteristics and health literacy.13,14
Data Collection
An audio recorder was placed in the clinic room by a study
coordinator at the beginning of the visit and it recorded
throughout; the clinician or patient could stop recording at
any time. Data were collected between May 3, 2012, and
September 23, 2014. Recorders were kept in a Health
Insurance Portability and Accountability Act–approved
locked container and transferred via restricted access
servers or encrypted universal serial bus drives. Pro-
fessional interpreters translated Spanish transcripts into
English.
Qualitative Analysis
Trained study staff screened and time stamped all 529
individual patient recordings for discussions of financial
issues. Any ambiguity in what constituted an instance of
financial issue discussion was resolved in consultation with
the principal investigator (J.C.T.). A coinvestigator (R.W.)
listened to all patient recordings flagged for cost/financial
issues. Each cost conversation/transcript represents a
unique patient. Any mention of cost-related aspects in
transcripts was considered a cost conversation, whether
the conversation was consecutive or intermittent in the
transcript. Total time of a cost conversation was the cu-
mulative time focused on cost during the entire recording.
Qualitative content analysis and descriptive statistics were
used to summarize participant characteristics and con-
versation content. Three investigators (R.W., C.C.K., J.C.T.)
independently read a randomly selected subset of 15
transcripts (five from each site) to identify preliminary
themes. Candidate themes were compared and revised in
person to achieve consensus and were used to create
a preliminary codebook. Two investigators (R.W., C.C.K.)
then independently read and coded all the transcripts to
identify main themes as well as key structural features of
the conversations. For each recording, we identified who
initiated the cost conversation (defined as the person who
explicitly stated any cost-related issue), how long the
conversation lasted, and whether the issue was addressed
by the clinician (defined as verbal acknowledgment of the
issue). Analysis occurred by iterative discussions and
summary memos during coding. All codes were compared,
and consensus was achieved. New themes were added to
the codebook until saturation.
Statistical Analysis
We used descriptive statistics of counts and frequencies for
categorical data and means and standard deviations for
continuous data. Clinician characteristics were compared
by the percentage of encounters where cost was discussed
(, 25%, 25% to 49%, and $ 50%). To test for differences
in frequency with which cost was discussed among groups,
we used the x2
test, unless counts were less than five, in
which case Fisher’s exact test was used. For continuous
outcomes, we used the Kruskal-Wallis test. All analyses
were conducted in SAS software (version 9.4; Cary, NC),
and tests were two sided. P values less than .05 were
considered significant.
RESULTS
Study Population
Patient characteristics are listed in Table 1. Mean age of
patients who raised cost issues was 60 years (range, 22 to
93 years); a majority were female (58%) and non-Hispanic
white (69%). There were no significant differences in sex,
race, ethnicity, tumor location, cancer care continuum,
income, education, or insurance type for patients who did
or did not raise cost issues. Clinician characteristics are
listed in Table 2. Clinical encounters that included cost
conversations were significantly different by sex (P = .043),
occurring with 27% (seven of 26) of female clinicians
versus only 6% (two of 35) for male clinicians. Clinicians
Journal of Oncology Practice e691
Cost Conversations in Cancer
who discussed cost in at least 50% of their encounters also
had fewer years in practice (P = .03).
Cost Conversation Characteristics
Among the 529 audio recordings, there were 151 (28%)
unique patient encounters containing some mention of
cost-related issues. There were 86 (26.3%) of 327 in-
stances at the Upper Midwest site, 20 (26.7%) of 75 at the
Southern California University site, and 45 (35.4%) of 127
at the Southern California county site. Mean duration of any
cost discussion was shorter than 2 minutes (Table 3). Cost
issues were raised by patient or caregiver/companion 70%
of the time (106 of 151) and by clinician 25% of the time
(39 of 151); both clinician and patient raised cost in the
same encounter 5% of the time (six of 151) regarding two
different cost-related issues. When an issue was raised, it
was verbally acknowledged by the clinician 60% of the
time. A specific action to address the cost issue was
mentioned in 25% of instances. Six of the 151 conversa-
tions resulted in social worker referral.
Conversation Themes
We identified six overarching themes that emerged from
analyzing transcripts containing cost conversations: at-
tentiveness to insurance eligibility/coverage; work concerns
and employment issues; cost of drugs; cost as a tool to
influence decision making; cost of specific tests, visits, or
equipment; and social determinants of health.
Here we illustrate these overlapping themes with excerpts
from transcripts (C, P, and L represent clinician, patient,
and lay caregiver, respectively). Additional excerpts high-
lighting these themes are listed in Appendix Table A1
(online only).
Attentiveness to insurance eligibility/coverage. Patients and
caregivers were attuned to and concerned about insurance
eligibility and how it would affect their care options, often
developing insurance expertise they would use to inform
TABLE 1. Patient Characteristics by Whether Cost Was Discussed
(N = 529)
Characteristic
No. (%)
P
Discussed
(n = 151)
Not
Discussed
(n = 378)
Age, years .07*
Mean 57.6 59.6
SD 13.7 13.1
Sex .49†
Male 67 (44.4) 154 (40.7)
Female 84 (55.6) 224 (59.3)
Race/ethnicity .68‡
Non-Hispanic white 103 (68.7) 262 (70.4)
Non-Hispanic black 2 (1.3) 7 (1.9)
Non-Hispanic Asian 8 (5.3) 13 (3.5)
Non-Hispanic other 1 (0.7) 7 (1.9)
Hispanic 36 (24.0) 83 (22.3)
Highest education level .24‡
Less than high school 20 (13.5) 49 (13.3)
High school graduate 28 (18.9) 100 (27.1)
Some college/technical 47 (31.8) 87 (23.6)
College graduate 24 (16.2) 53 (14.4)
Postgraduate 27 (18.2) 70 (19.0)
Other 2 (1.4) 10 (2.7)
Annual household income, US$ .45‡
, 10,000 22 (16.3) 55 (15.8)
10,000 to , 20,000 15 (11.1) 46 (13.2)
20,000 to , 35,000 24 (17.8) 41 (11.8)
35,000 to , 50,000 20 (14.8) 52 (14.9)
50,000 to , 75,000 10 (7.4) 41 (11.8)
. 75,000 44 (32.6) 113 (32.5)
Primary insurance .26‡
Private only 56 (37.1) 138 (36.5)
Government 6 private 91 (60.3) 237 (62.7)
No coverage 4 (2.6) 3 (0.8)
Tumor location .33†
Breast 37 (24.5) 116 (30.7)
GI 62 (41.1) 136 (36.0)
Other§ 52 (34.4) 126 (33.3)
Cancer care continuum .81†
Initial diagnosis 8 (5.3) 22 (5.9)
Early initial treatment 14 (9.3) 29 (7.7)
Mid initial treatment 33 (21.9) 79 (21.1)
Post-treatment, survivorship, or
remission
46 (30.5) 136 (36.3)
(continued in next column)
TABLE 1. Patient Characteristics by Whether Cost Was Discussed
(N = 529) (continued)
Characteristic
No. (%)
P
Discussed
(n = 151)
Not
Discussed
(n = 378)
Recurrence; undergoing
treatment
44 (29.1) 93 (24.8)
End-stage disease 6 (4.0) 16 (4.3)
NOTE. Not all numbers add up to 529 because of missing values.
Abbreviations: SD, standard deviation; US$, United States dollars.
*Kruskal-Wallis test.
†x2
test.
‡Fisher’s exact test
§Other: brain (n = 17), genitourinary (n = 39), gynecologic (n = 25),
head and neck (n = 14), lung (n = 35), melanoma (n = 21), sarcoma
(n = 23) and miscellaneous (n = 4).
e692 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8
Warsame et al
their clinicians. Pertinent topics included insurance ap-
proval, anticipated denials, and appeal writing to minimize
treatment delays. Insurance complexities were entangled
with emotional distress and frustration.
C: So don’t be worried. And, you know, it’s frustrating,
to sometimes hear stories like that you know, the
preauthorization and anxiety…
P: Yeah, that is enough, I was a basket case and
[insurance provider] were probably like “what is she
freaking out, crying?”
C: I’m really sorry. I wish our health care system
would be different.
For many, the payers influenced the timing and number of
clinician visits and test ordering or treatment regimens.
TABLE 2. Clinician Characteristics by Frequency of Encounters With Cost Conversations
Characteristic
No. (%)
P
Frequency (%)
Total
(n = 61)
< 25
(n = 18)
25-49
(n = 34)
‡ 50
(n = 9)
Sex .043*
Male 13 (72.2) 20 (58.8) 2 (22.2) 35 (57.4)
Female 5 (27.8) 14 (41.2) 7 (77.8) 26 (42.6)
Age, years .11†
Mean 41.3 42.1 34.2 40.7
SD 10.4 10.5 4.1 10.0
Median 38.5 38 33 38
Range 28-67 29-66 29-40 28-67
Race/ethnicity .38*
Non-Hispanic white 13 (72.2) 23 (67.6) 3 (33.3) 39 (63.9)
Non-Hispanic black 0 (0.0) 1 (2.9) 0 (0.0) 1 (1.6)
Non-Hispanic Asian 4 (22.2) 7 (20.6) 4 (44.4) 15 (24.6)
Non-Hispanic other 0 (0.0) 2 (5.9) 1 (11.1) 3 (4.9)
Hispanic 1 (5.6) 1 (2.9) 1 (11.1) 3 (4.9)
Type .27*
MD consultant 11 (61.1) 16 (47.1) 2 (22.2) 29 (47.5)
MD fellow 6 (33.3) 12 (35.3) 4 (44.4) 22 (36.1)
NP 1 (5.6) 6 (17.6) 3 (33.3) 10 (16.4)
Formal training/coursework in cancer communication .46*
Yes 3 (16.7) 11 (32.4) 3 (33.3) 17 (27.9)
No 15 (83.3) 23 (67.6) 6 (66.7) 44 (72.1)
Years in practice .03†
Mean 14.9 13.7 6.3 13.0
SD 10.8 10.0 4.7 10.0
Median 10.5 10.5 4.0 10.0
Range 3-41 0-33 2-16 0-41
Encounters per clinician .22†
Mean 8.6 9.2 6.8 8.7
SD 3.6 3.0 3.8 3.4
Median 9 8 5 8
Range 1-15 3-15 2-14 1-15
Abbreviations: MD, medical doctor; NP, nurse practitioner; SD, standard deviation.
*Fisher’s exact test.
†Kruskal-Wallis test.
Journal of Oncology Practice e693
Cost Conversations in Cancer
P: Yesterday I got here and [state health maintenance
organization] weren’t going to let me have a CT
[computed tomography] scan; they weren’t going to
let me have my appointment today because they
informed me it is the patient’s responsibility to obtain
the prior authorization from my doctor.
Given the obscurity of associated costs, a frequent but
peculiar practice involved sending a so-called test order as
a technique to figure out cost and/or coverage for a given
intervention being contemplated. If that test resulted in
a prohibitive price tag (discoverable only after it had been
ordered), they might repeat with a different intervention
order or appeal the original test ordered with telephone calls
or letters. This form of workaround to ascertain the out-of-
pocket cost of a test was common.
Work concerns and employment issues. Work concerns
included current employability (not being able to perform
one’s current work), early termination, work restriction/
accommodation, ability to get time off for medical visits,
timing of disability application, and fears regarding future
employability (not being able to obtain future work when
healthy). Younger patients expressed suspicions of em-
ployers’ terminating workers with high health care costs or
those viewed as a liability in the workplace.
P: They’re trying to get rid of all of us at work that have
health-related problems.
A preponderance of conversation excerpts in this theme
focused on assuring that paperwork was signed or dis-
ability eligibility considerations were addressed. Because
of the US insurance system, work security concerns
were enmeshed with fears of losing insurance coverage
altogether.
P: I’m afraid of losing my job and not having health
insurance since no one else (insurance company)
will take someone with a later stage cancer unless the
national health care plan comes into effect. Um if I’m
on disability. Would I even qualify for disability at this
stage?
Discussion about medical leave also precipitated conver-
sations about retirement or disability. Early retirement was
common but not necessarily viewed negatively, because
some patients welcomed the opportunity to have more time
to spend with loved ones and coordinate their care, not-
withstanding the untimely and tragic circumstances.
P: Yeah, I was getting kind of burnt out in my job. It
was getting pretty stressful. So this is kind of a strange
little retirement, but I’m okay with it.
Cost of drugs. Costs of cancer drugs, supportive care
medications, and even over-the-counter medications
posed challenges. Patients and clinicians discussed high
costs, copays, and unpredictable coverage. When cost of
drugs was raised by clinicians, it was frequently done to
caution patients about the potential copays or delays in
obtaining treatment. Clinicians frequently encouraged pa-
tients to contact their insurance providers before filling
the prescriptions to find out how much it would affect
them.
C: This issue becomes…it’s…it’s incredibly expen-
sive and sometimes, if you have a copay or things like
that, it’s just not feasible to pay for months and
months of this.
P: The shot. So what does it cost?
C: So, everybody’s different. It depends on your copay.
Similar to ordering tests or other interventions, there was
a general sense of frustration on the part of the clinicians
about the obscurity of medication costs and coverage in-
formation. In one instance with an anticoagulant, two so-
called test prescriptions for low molecular weight heparin
were given, along with one test prescription for warfarin, to
see which was affordable. These workarounds involving
TABLE 3. Duration of Discussions
Characteristic
No. (%)
Upper Midwest
(n = 86)
Southern California
(n = 20)
Southern California County
(n = 45)
Length of encounter, minutes
Mean 29.7 15.2 14.9
SD 14.1 10.4 8.1
Cost conversation length, minutes
Mean 1.8 1.2 1.5
SD 1.8 0.9 1.1
Clinician initiated 28 (33) 1 (5) 10 (22)
Patient or caregiver initiated 54 (64) 18 (90) 34 (76)
Both patient and caregiver initiated 3 (3) 1 (5) 1 (2)
Abbreviation: SD, standard deviation.
e694 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8
Warsame et al
multiple prescriptions for medications and elaborate con-
tingency planning for treatment recommendations on the
basis of cost information were commonly used to address
issues (if they were addressed), potentially causing con-
fusion for patients.
Patients displayed a spectrum of reactions to the cost of
medications, from not wanting to hear the cost, because
that would put a price tag on their life, to wanting to limit the
number of pills filled at the pharmacy to avoid paying for
unused medications.
P: Well, I ain’t gonna pay no 30 days if I’ll be dead by
that time.
One patient rationed and stockpiled targeted chemother-
apeutic agents in hopes of bartering them for other drugs.
Patients frequently asked for less than a 30-day supply,
especially with as-needed supportive medications, to get by
on the minimum required.
Cost used as a tool to influence decision making.
Clinicians used cost of cancer treatments as a negotiating
tool (ie, a means to convince patients of recommenda-
tions). For instance, when a clinician thought cheaper
chemotherapy was better than newer targeted agents, the
price tag helped persuade patients.
C: The thing is, is because a pill is, um, like $20,000
a month or $10,000 a month, um, and chemotherapy
is cheaper, they might not approve it. So your only
choice might be the chemotherapy.
P: Well, let’s try it.
Clinical trials and research participation were also rec-
ommended as cost-saving mechanisms for patients. It
would be a win-win to obtain treatment that was otherwise
unavailable and generally at no additional cost for the
experimental regimen.
P: And would it be a study?
C: It’ll be a study, and then it will be free because I’m
raising dollars. You know, I’m beggin’ Tom, Dick, and
Harry multiple times to give me money to do that.
Clinicians also invoked cost to discuss hospice, because
medications, hospitalizations, and support could be cov-
ered, generally be at little or no additional expense (Ap-
pendix Table A1).
Cost of specific cancer treatment–related interventions. It
was common to have specific interventions or even the cost
of parking be discussed. There were times when patients
would become emotional about the cost of imaging or why
computed tomography was performed instead of positron
emission tomography/computed tomography, fearing that
they were undergoing an inferior scan because of the
expense associated with the positron emission tomography,
which insurance would sometimes refuse to cover.
C: The other thing is the, uh, cost. You know, some
patients say that you know my—I’ve got a big copay,
and the PET [positron emission tomography] scan is
much more expensive than a, a CT [computed
tomography] scan.
P: Well, that hasn’t killed me so far.
In this quote the clinician seems to be delicately
approaching the out-of-pocket cost associated with an
intervention, hypothetically to gauge the patient’s reaction.
Concern regarding health care costs was not limited to
scans; laboratory testing, consultations, parking, handicap
stickers, and medical devices were all mentioned. Cranial
prostheses (wigs) were frequently discussed, as were the
associated expenses. Even with insurance subsidizing wigs
through prescription, the cost of wigs could be prohibitive.
Patients also commonly mentioned avoiding certain addi-
tional consultative services like genetic counseling, di-
eticians, and physical therapy/rehabilitation because of the
associated expenses.
Social determinants of health. The most challenging situ-
ations we observed occurred when essential costs of basic
needs (food, shelter, and clothing) were mentioned. When
patients were uninsured and already struggling to meet the
most basic needs, a cancer diagnosis was even more
devastating. For instance, one young man struggling to find
a place to sleep or even shower who underwent emergent
lifesaving surgery subsequently received a bill he felt was
impossible to pay. Homeless patients obtaining chemo-
therapy through Medicaid still need to pay for supportive
care. Other complexities related to basic needs include
questions like whether a peripheral catheter is feasible in
a shelter.
P: I really need the help, you know…
C: Yeah.
P: …like you know, with funds, you know, honestly,
and you know help me to, to you know, I, I try to go to
these places where you know to go in and, and uh
and what do you call it? And, and go and get a warm
meal and, and take a shower and go to sleep there
and everything.
These conversations were associated with the most emo-
tional distress.
DISCUSSION
In this study, clinicians and patients described in their own
words how they navigate financial matters. We found that
cost discussions were not infrequent; the issue of cost was
most often raised by patients/caregivers, but it often went
unaddressed when raised. The average duration of a cost
conversation was brief. Patients who brought up cost were
similar to the entire cohort, suggesting the likely ubiquity of
financial concerns. Clinicians who did bring up cost were
more likely to be female and have fewer years in practice.
Journal of Oncology Practice e695
Cost Conversations in Cancer
Cost conversations that did occur demonstrated atten-
tiveness to insurance eligibility processes, work security
and employment issues, cost of medications or health care
specifics, influence on decision making or a clinical care
plan, and threats to basic needs.
Discussing money or any socioeconomic constraint on care
is rarely easy for clinicians, especially while simultaneously
trying to address clinical challenges. Balancing the emo-
tions of the patient and family/caregiver can be difficult and
require care and skill. However, the cost of cancer care is
a topic that seems unavoidable in contemporary oncology
practice. This may explain why younger clinicians were
more likely to discuss these topics, because the current
health care climate is inextricably linked to finances. Similar
to our study, the study by Hunter et al15
assessed cost
conversations in 677 breast cancer clinic visits with phy-
sicians and found cost was mentioned in one in five clinic
visits; these conversations were short, lasting less than
1 minute, and focused on cost-reducing strategies. How-
ever, in contrast to that study, we found that clinicians
raised cost issues much less commonly than patients (30%
v 59% in the Hunter et al15
study). In addition, providers
were less likely to address cost-related issues (only 25% of
the time v nearly 40% in the Hunter et al15
study). This
discordance could be a result of some important differ-
ences between our study and that by Hunter et al.15
Our
study occurred predominantly at academic sites, included
all cancer types, had a higher rate of uninsured patients
(3.2% v 0.004% in the Hunter et al15
study), and included
advanced-practice provider visits in addition to physician
visits. Moreover, our study goes into depth to characterize
the content of discussions between patients with cancer,
caregivers, and providers; our study also included patients
with multiple tumor types, making it relevant for patients
with cancer in general. Other single-center studies have
demonstrated financial issues are broached between 14%
and 58% of the time.6-8
In contrast, patient opinion studies
have suggested that patients want cost to be included in
oncology visits more (52% to 96%).6,7,16-18
Therefore, there
seems to be a disconnect between oncologists’ desire to
address cost, patient expectations, and actual occurrence
of these discussions.
Our data demonstrate significant concern across care
contexts and clinical populations about the impact of
a cancer diagnosis on overall financial stability and so-
cioeconomic well-being of patients and families. How to
afford care manifests as several financial issues in con-
versations. Emotional distress associated with these con-
cerns was frequently evident.
Most clinicians feel they have some responsibility in dis-
cussing and containing costs of care.19,20
Although gen-
erally sympathetic, clinicians frequently did not take direct
action in response. Clinicians addressed cost if it directly
influenced their decision making or played into their per-
suasive strategy (eg, clinical trial recruitment or therapy
choice). There seems to be an intricate and delicate game
that occurs when clinicians address financial matters,
creating workarounds to address patient needs. There were
several instances when insurance coverage was unknown
for an intervention, and a variety of scenarios played out to
determine coverage. Although issues were only acted upon
25% of the time, the most common way to address or
preempt cost issues was contingency planning, either with
a multiple parallel plans approach or via sequential so-
called test orders. This shows there is dedication to miti-
gating financial issues when direction of clinical manage-
ment is affected. The exhausting clinical burden of this type
of contingency care planning needs to be acknowledged
and could adversely influence adherence and treatment
response. Our data support a growing concern that barriers
exist for patients and clinicians robustly and routinely en-
gaging in conversations about financial matters in cancer
care that result in concrete help.
Barriers may include lack of time, lack of training on the
topic, and unknown strategies to address financial issues if
asked. In our study, when financial issues were raised,
direct action was taken in only 25% of cases, and 40% of
the time, no verbal acknowledgment was given. Good
communication and reflexive listening where patients are
acknowledged and validated are simple but powerful
strategies to help validate financial concerns and be
supportive of patients’ struggles even when a resolution is
not offered. Evidence in physician and patient communi-
cation supports this strategy, as do our recordings.21,22
Clinicians must be aware of the general costs of care
that they prescribe to prepare patients for potential out-of-
pocket expenses.22
Verbal support and validation without
action by clinicians suggests discomfort or unfamiliarity
with resources to address concerns, as has been similarly
reported in other studies.6,23
It is also possible that clini-
cians may have a fundamental issue with how to appro-
priately manage fiduciary responsibility toward patients’
best interests and take into consideration the cost of care.24
Communication skills can be improved and empower cli-
nicians to address an array of psychosocial behaviors.25
Therefore, ASCO has released a guideline on the cost of
cancer care, intended to help physicians navigate these
complex and intricate discussions.26,27
Additional recom-
mendations to address financial concerns from the litera-
ture and our audio recordings include referral to social
services, which can help patients with counseling and
coping strategies as well as benefits assessment for in-
surance and disability paperwork, pharmacy consultations
to manage medications and drug interactions and find
equivalent generics, and referral to patient navigators, such
as the American Cancer Society, which can help identify
resources to support patients, including grants and funding
that can be used to mitigate costs.22,28,29
There has also
been increased focus on and recognition of the challenge of
cancer care financially for patients and society in the last
e696 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8
Warsame et al
5 years. Recently, there have been several societal de-
velopments to help clinicians address the cost of cancer
care, such as the ASCO Value Framework, which provides
the relative value of various cancer treatments compared
with clinical trial data; the NCCN evidence blocks, which
include consideration of cost in treatment choices; and the
Choosing Wisely campaigns, which recommend ways to
minimize waste in various specialties, including hematology
and oncology.11,25,26
These campaigns highlight the in-
creasing attention on addressing the cost of cancer care
and supporting clinicians who undoubtedly are involved in
helping patients navigate these situations but may not be
best equipped to tackle them. Moreover, physicians may
not be the ideal people to mitigate costs; there is evidence
that use of financial navigators can help patients manage
out-of-pocket expenses.29,30
There is opportunity for con-
tinued improvement in tackling financial costs in cancer
care, and multiple stakeholders in addition to physicians
will be necessary to adequately address this issue.
This multicenter study with a large number of observations
nevertheless has limitations. The recorded conversations in
this study were completed by September 23, 2014. It is
possible that some aspects of cost conversations between
patients and clinicians have changed since our data col-
lection. However, examining temporal changes in how
conversations occur, particularly in the wake of emerging
policy discussions, could shed additional light on how those
policy initiatives are playing out in practice. Our conver-
sations were limited to those between a patient and his or
her clinician. We did not capture duration of patients’
treatment or any conversations between patients and fi-
nancial counselors, pharmacists, or social workers. Anal-
ysis was performed independently and in duplicate and
included a content expert and a clinician noncontent expert
to increase trustworthiness of our inferences; however,
qualitative analyses are not generalizable to an entire
population. Moreover, although our sample included 25%
Hispanic/Latino participants, African Americans or Asians
comprised less than 10% of patients. Different demographic
subgroups may face different financial barriers. In ad-
dition, we did not capture nonverbal communication
behaviors. Last, we captured one clinic visit per patient;
cost issues may have been addressed before or after
this visit.
In conclusion, our findings add to a growing body of lit-
erature on financial toxicities in oncology and broaden the
categories that inform that literature. The frequency with
which financial issues were raised and the context of those
conversations suggest opportunities to improve discussion
of cost in routine oncology practice. High-quality conver-
sations that include cost are essential in choosing treat-
ments, calibrating care to the life of the patient.
AFFILIATIONS
1
Mayo Clinic, Rochester, MN
2
University of Colorado, Denver, CO
3
University of Minnesota, Minneapolis, MN
4
University of Southern California, Los Angeles, CA
CORRESPONDING AUTHOR
Rahma Warsame, MD, Division of Hematology, Mayo Clinic, 200 First St
SW, Rochester, MN 55905; e-mail: warsame.rahma@mayo.edu.
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
AND DATA AVAILABILITY STATEMENT
Disclosures provided by the authors and data availability statement (if
applicable) are available with this article at DOI https://doi.org/10.1200/
JOP.18.00618.
AUTHOR CONTRIBUTIONS
Conception and design: Rahma Warsame, Aminah Jatoi, Jon C. Tilburt
Collection and assembly of data: Rahma Warsame, Ashok Kumbamu, Cara
Fernandez, Aminah Jatoi
Data analysis and interpretation: Cassie C. Kennedy, Ashok Kumbamu,
Megan Branda, Aaron L. Leppin, Brittany Kimball, Thomas O’Byrne,
Aminah Jatoi, Heinz-Josef Lenz, Jon C. Tilburt
Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors
ACKNOWLEDGMENT
Supported by National Institutes of Complementary and Integrative
Health Grant No. R01 AT06515 (J.C.T.); the Robert D. and Patricia E.
Kern Center for the Science of Health Care Delivery, Mayo Clinic (R.W.,
C.C.K.); Grant No. K23 HL128859 from the National Heart Blood
Institute, National Institutes of Health (NIH; C.C.K.); and by Clinical and
Translational Science Award No. UL1 TR000135 from the National
Center for Advancing Translational Science. The contents are solely the
responsibility of the authors and do not necessarily represent the official
views of the NIH.
REFERENCES
1. Mariotto AB, Yabroff KR, Shao Y, et al: Projections of the cost of cancer care in the United States: 2010-2020. J Natl Cancer Inst 103:117-128, 2011
2. Levit LA, Balogh EP, Nass SJ, et al (eds): Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC, National
Academies Press, 2013
3. Dusetzina SB, Winn AN, Abel GA, et al: Cost sharing and adherence to tyrosine kinase inhibitors for patients with chronic myeloid leukemia. J Clin Oncol 32:
306-311, 2014
4. Ramsey S, Blough D, Kirchhoff A, et al: Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis.
Health Aff (Millwood) 32:1143-1152, 2013
Journal of Oncology Practice e697
Cost Conversations in Cancer
5. Schrag D, Hanger M: Medical oncologists’ views on communicating with patients about chemotherapy costs: A pilot survey. J Clin Oncol 25:233-237, 2007
6. Altomare I, Irwin B, Zafar SY, et al: Physician experience and attitudes toward addressing the cost of cancer care. J Oncol Pract 12:e281-e288, 247-248, 2016
7. Kelly RJ, Forde PM, Elnahal SM, et al: Patients and physicians can discuss costs of cancer treatment in the clinic. J Oncol Pract 11:308-312, 2015
8. Zafar SY, Chino F, Ubel PA, et al: The utility of cost discussions between patients with cancer and oncologists. Am J Manag Care 21:607-615, 2015
9. Shields AL, Hao Y, Krohe M, et al: Patient-reported outcomes in oncology drug labeling in the United States : A framework for navigating early challenges. Am
Health Drug Benefits 9:188-197, 2016
10. Schnipper LE: ASCO task force on the cost of cancer care. J Oncol Pract 5:218-219, 2009
11. National Comprehensive Cancer Network: NCCN Evidence Blocks. https://www.nccn.org/evidenceblocks/
12. Kimball BC, James KM, Yost KJ, et al: Listening in on difficult conversations: An observational, multi-center investigation of real-time conversations in medical
oncology. BMC Cancer 13:455, 2013
13. Dyer N, Sorra JS, Smith SA, et al: Psychometric properties of the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group
Adult Visit Survey. Med Care 50:S28-S34, 2012 (suppl)
14. Locke DEC, Decker PA, Sloan JA, et al: Validation of single-item linear analog scale assessment of quality of life in neuro-oncology patients. J Pain Symptom
Manage 34:628-638, 2009
15. Hunter WG, Zafar SY, Hesson A, et al: Discussing health care expenses in the oncology clinic: Analysis of cost conversations in outpatient encounters. J Oncol
Pract 13:e944-e956, 2017
16. Bestvina CM, Zullig LL, Rushing C, et al: Patient-oncologist cost communication, financial distress, and medication adherence. J Oncol Pract 10:162-167, 2014
17. Kaser E, Shaw J, Marven M, et al: Communication about high-cost drugs in oncology: The patient view. Ann Oncol 21:1910-1914, 2010
18. Meisenberg BR, Varner A, Ellis E, et al: Patient attitudes regarding the cost of illness in cancer care. Oncologist 20:1199-1204, 2015
19. Tilburt JC, Wynia MK, Sheeler RD, et al: Views of US physicians about controlling health care costs. JAMA 310:380-388, 2013
20. Patel MR, Shah KS, Shallcross ML: A qualitative study of physician perspectives of cost-related communication and patients’ financial burden with managing
chronic disease. BMC Health Serv Res 15:518, 2015
21. Ranjan P, Kumari A, Chakrawarty A: How can doctors improve their communication skills? J Clin Diagn Res 9:JE01-JE04, 2015
22. Zafar SY, Newcomer LN, McCarthy J, et al: How should we intervene on the financial toxicity of cancer care? One shot, four perspectives. Am Soc Clin Oncol
Educ Book 37:35-39, 2017
23. Berry SR, Bell CM, Ubel PA, et al: Continental divide? The attitudes of US and Canadian oncologists on the costs, cost-effectiveness, and health policies
associated with new cancer drugs. J Clin Oncol 28:4149-4153, 2010
24. de Kort SJ, Kenny N, van Dijk P, et al: Cost issues in new disease-modifying treatments for advanced cancer: In-depth interviews with physicians. Eur J Cancer
43:1983-1989, 2007
25. Gilligan T, Coyle N, Frankel RM, et al: Patient-clinician communication: American Society of Clinical Oncology consensus guideline. J Clin Oncol 35:3618-3632,
2017
26. Meropol NJ, Schrag D, Smith TJ, et al: American Society of Clinical Oncology guidance statement: The cost of cancer care. J Clin Oncol 27:3868-3874, 2009
27. Schnipper LE, Davidson NE, Wollins DS, et al: Updating the American Society of Clinical Oncology Value Framework: Revisions and reflections in response to
comments received. J Clin Oncol 34:2925-2934, 2016
28. Kopolovic I, Conter HJ, Hicks LK: ‘Choosing Wisely’ campaigns from ASCO and ASH: A review for clinicians in hematology and oncology. https://
www.gotoper.com/publications/ajho/2015/2015dec/choosing-wisely-campaigns-from-asco-and-ash-a-review-for-clinicians-in-haematology-and-oncology
29. Simon S: Patient navigators help cancer patients manage care. https://www.cancer.org/latest-news/navigators-help-cancer-patients-manage-their-care.html
30. Yezefski T, Steelquist J, Watabayashi K, et al: Impact of trained oncology financial navigators on patient out-of-pocket spending. Am J Manag Care 24(5 Suppl):
S74-S79, 2018
n n n
e698 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8
Warsame et al
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
Conversations About Financial Issues in Routine Oncology Practices: A Multicenter Study
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held
unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about
ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.
Heinz-Josef Lenz
Honoraria: Merck Serono, Roche, Bayer HealthCare Pharmaceuticals,
Boehringer Ingelheim
Consulting or Advisory Role: Merck Serono, Roche, Pfizer
Travel, Accommodations, Expenses: Merck Serono, Bayer HealthCare
Pharmaceuticals, Roche
No other potential conflicts of interest were reported.
Journal of Oncology Practice e699
Cost Conversations in Cancer
APPENDIX
TABLE A1. Representative Quotes Based on Different Themes
Topic Quote
Heightened awareness/
attentiveness to
insurance eligibility
and process
Precertification C: We will likely need a cat [CT] scan anyway, so let’s get a cat [CT] scan.
P: Whatever we need to do we need to make sure it is precertified. So I do not get into any trouble.
C: I’ll order that up and then have somebody talk to you about the certification stuff.
Insurance approval/
appeal
C: Enzalutamide is the next step but it is not FDA approved for patients before chemo[therapy]. We want to do this medication
because you are not a candidate for chemotherapy. When are you seeing your local oncologist?
P: Next week Tuesday.
C: We will tell him to put this in his note when he gives you the prescription. Also you should call your insurance. 9/10 times we
are pretty successful in convincing the insurance companies to go with this reasoning. If the insurance company says no,
tell your oncologist to call us. He should appeal, we can send articles and support as to why it should be used.
Prior authorization P: Okay. Well, I have a scan…I had a scan here, this time, but I was actually quite worried yesterday because with the
insurance I have, I have the state insurance, but I’m not from this state. So with the HMO that I had to have when I was
seeing the other cancer center, they made me switch to another HMO. That clinician is not up here and so my original
oncologist had told me that he had done the preauthorization and that we should be good to go…la, dah, da. Well, now,
finally … but long story short, yesterday I got here and weren’t going to let me have a CT scan; they weren’t going to let me
have my appointment today because they informed me it is the patient’s responsibility to obtain the prior authorization from
my doctor, which I was never, ever told that and it is like, well, I don’t get papers or anything, how am I to do this? Well, so
then I was talking to my mom about this; maybe it would be easier if I did have my CT scan and my blood work there and
then come up here for my appointment.
C: Perfectly fine.
Insurance eligibility C: So don’t be worried. And, you know, it’s frustrating, to sometimes hear stories like that you know, the preauthorization and
anxiety…
P: Oh, yeah, because we were literally…we were in the parking ramp already.
C: On top of your having to deal with this disease.
P: Yeah, that is enough, I was a basket case and they were probably like what is she freaking out crying? It is because you have
no idea, like, had I not known until I talked to you right now, I don’t know what my status is.
C: I’m really sorry. I wish our health care system would be different.
Time intensive C: Oh, listen. Today I spent no less than 2 hours trying to explain to an insurance company in California to do the right thing
and they still would not do it.
Preexisting condition P: Having just gone through that because we were on Cobra insurance in the middle of my cancer and it expired, and had to
find new insurance, which is really hard when you are in the middle of a cancer experience, and it was really hard because
nobody wants you. We were able to find one and it is fine and we can afford it but it is not cheap, having breast cancer and
being uninsured is a whole lot worse than the premiums.
Fear of insurance loss P: Because that also becomes on the record. I worry about insurance, that whether that will complicate either my nieces’
getting insurance, or my son or his daughter.
Uncertainty of coverage
timing
L: We won’t know till after they’re done whether they’ll be paid for though.
P: Oh, we hate that.
C: Oh, I love how that works.… It’s kinda like the mortgage industry.
P: Yeah
C: Oh! Don’t you worry. You wanna buy a house that you can’t afford? No problem.
P: I know, yeah.
C: Then, bam!
L: We can see how that went.
(continued on following page)
e700 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8
Warsame et al
TABLE A1. Representative Quotes Based on Different Themes (continued)
Topic Quote
Work insecurity
FMLA L: Is there any way you could help me out with the—a form so I can go back to work just in case—I, I just started my job.
C: Of course. Yeah.
L: My manager was cool but, you know, I just don’t wanna show up empty handed.
C: No problem. Just say that you’re here with your father.
Unemployment from
illness
P: I call my boss and I say, “Can I go back to work?” And he’s like, “As long as I get a paper.” This was in December. So he’s
seen me and he goes, “Oh, my God.” He goes, “Just go home. Do something, I don’t want you to fall right here.”
C: Yeah.
P: And he’s like, “You don’t,” he goes, “I don’t want you to fall in here,” and he goes, “I’ll give you a cup of water, but in the
parking. Go home.”
Disability qualifications P: I have to work without pay. Benefits suck. My short-term disabilities there. I can’t use it. I can’t stop treatment, so I have to
meet with HR today.
C: Figure out what to do .
P: Uh-huh, yeah.
C: What’s the reason behind that they’re not giving you disability or short term now?
P: Cuz it ran out and I went back to work.
C: Sure, then all this happened.
P: Yeah and I didn’t qualify for long-term disability. I used to be so proud working for, but in a situation like, I’m not.
Suspicion of job loss P: They’re trying to get rid of all of us at work that have health-related problems.
Fear of job loss P: I’m afraid of losing my job and not having health insurance since no one else will take someone with a later stage cancer
unless the national health care plan comes into effect.… Um, if I’m on disability I can get on that. Would I even qualify for
disability at this stage?
C: Not to my knowledge. I couldn’t sign something and I do not know.
P: Okay, it doesn’t, unless my cancer comes back.
C: Yeah, which we don’t want it to come back.
P: I gotta figure something out.
C: Okay
P: Yeah, they are really trying to downsize. So we’ll see what happens.
Early retirement P: Yeah, I was getting kind of burnt out in my job. It was getting pretty stressful. So this is kind of a strange little retirement, but
I’m okay with it.
C: Okay…well, good. Wonderful. What a beautiful perspective, you know!
Cost of drugs
Cost of medication L: So how much money would this be?
C: Well, it could be a lot of money.… But it could be $20,000 per month. I mean that kind of thing. This ain’t—this ain’t cheap.
P: That makes you think.
Saving medications to
barter
L: I was wondering, we have a lot of Sutent.
C: You’re on it, right? The Sutent.
L: Yes, I was wondering if we could switch over to Avastin cuz that was what the doctor originally wanted, if somebody had it.
He said you could trade. There’s a bartering system somehow…
L: Stockpile it just in case they started.
P: To trade it.
(continued on following page)
Journal of Oncology Practice e701
Cost Conversations in Cancer
TABLE A1. Representative Quotes Based on Different Themes (continued)
Topic Quote
Contingency planning
with medications
C: So how about I give you one for a week’s worth?
P: Okay.
C: And then give you this one for a month.
P: Okay, that’s fine.
C: And if you meet with the blood clotting specialist and they feel strongly you should stay on the shot one.
P: Okay.
C: Then we’ll fill the…the month one. Does that make sense?
Cost of drugs L: Well, by the time they get it, we’ll order it and stuff, it’ll probably take a little bit.
P: Well, I ain’t gonna pay no 30 days. I’ll be dead by that time.
Caution about
prescription cost
C: This issue becomes…it’s…it’s incredibly expensive and sometimes, if you have a copay or things like that, its just not
feasible to pay for months and months of this.
P: The shot. So what does it cost?
C: So, everybody’s different. It depends on your copay. I know you have a different insurance, but I mean, it’s on the orders of
thousands of dollars a…you know, a month. It’s, it’s very expensive.
L: Thousands a month?
Cost of drugs P: So can we do the treatments.
C: Yep.
L: We won’t know till after they’re done whether they’ll be paid for though.
C: I love how that works…Oh! Don’t worry, you wanna buy a house that you can’t afford? No problem.
Cost as tool to influence
decision making
Hospice costs C: Well, if the—the thing is, is because a pill is, um, like 20,000 dollars a month or 10,000 dollars a month, um, and
chemotherapy is cheaper, they might not approve it. So your only choice might be the chemotherapy.
P: Well, let’s try it. If they don’t, then I’ll come back and ha, ha, don’t have no choice.
C: Why do you think we’re gonna try and talk you into hospice for our benefit?
P: Didn’t necessarily say it’s for your benefit, but it’s just—I just—I don’t think I really need it. I don’t think it’s a cost I really
need to—
C: Is that—
P: …Undertake.
C: Is cost an issue?… They, they will respect your wishes and that’s what I, I wanna emphasize. They’re not gonna tell you what
to do. They’re gonna help you in doing what you want to do.
Recommending clinical
trial with cost as
incentive
P: And would it be a study?
C: It’ll be a study, and then it will be free because I’m raising dollars. You know, I’m beggin Tom, Dick, and Harry multiple
times to give me money to do that.… You know I’m not pushing at all cuz it’s—it’s a tricky situation. Uh, we don’t have—I
don’t wanna wait until then to try this.
Clinical trial cost savings L: So the—the only difference is, with the clinical trial, is you would mix the drugs in the pharmacy?
C: Exactly. I’d mix the drugs in the pharmacy, and it would be free for you. There would be no costs involved in it because I’d—
you know, I’d provide all of this for free.
Cost of health care–specific
needs
Scan cost C: If you don’t mind the time. The other thing is the, uh, cost. You know, some patients say that you know my—I’ve got a big
copay, and the PET scan is much more expensive that a, a CT scan.
P: Well, that hasn’t euthanized me so far.
Wig cost P: I know that there’s, like with our insurance, up to $400 I can get a wig there.
C: Okay.
(continued on following page)
e702 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8
Warsame et al
TABLE A1. Representative Quotes Based on Different Themes (continued)
Topic Quote
PET scan v CT C: But your insurance company denied the PET scan. Um, insurance companies are doing this more and more. They said,
“Why are you doing a PET scan? There’s nothing suspicious on the CAT [CT] scan.” So we had to drop it or else you had to
pay a few thousand dollars, so we said forget it.
P: All right.
C: What we’ll do is we’ll repeat another CAT [CT] scan in 3 months. You’ll bet CAT [CT]—you’ll have a CAT [CT] scan every
3 months for a year with blood work, and then we’ll go to 6 months, and then eventually to a year. And for the first year, it’ll
be—you’ll be scanned every 3 months.
P: All right. Will you try again for a PET scan?
Cost of basic needs
Homeless P: I really need the help, you know, like, you know—
C: Yeah.
P: …Like you know, with funds, you know, honestly, and you know help me to, to you know, I, I try to go to these places where
you know to go in and, and uh and what do you call it? And, and go and get a warm meal and, and take a shower and go to
sleep there and everything.
C: Uh huh.
P: I’m gonna be honest with you, that’s not a place for me. You know. I, I, I shower every single day and believe it or not, I
shower, you know, even with the water hose as cold as it is right now, I shower like that. I’m just like, you know…
Transportation P: Sure. Okay. And, um, am I able to drive here for the chemo[therapy] or should I have the American Cancer Society?
C: I mean, you can—if you can drive here, you know, if you feel good you can drive, but if—but also, chemotherapy I cannot
give you any guarantees because if you feel bad after that, I—
P: I see. Okay.
C: I’m not sure if you can drive back home on your own.
P: I see. Okay. So, okay.
Shelter living and
chemotherapy
L: The other question is does it make sense to have this outpatient or inpatient, because of his living environment. Should he
receive chemotherapy in the hospital?
C: This is something we do inpatient, sorry I mean outpatient.
L: Right, I mean him having a line in the shelter, the shelter director my not allow it.
C: I mean, he is going to have to have the line for months.
Abbreviations: C, clinician; CT, computed tomography; FDA, US Food and Drug Administration; FMLA, Family and Medical Leave Act; HMO, health
maintenance organization; HR, human resources; L, lay caregiver; P, patient; PET, positron emission tomography.
Journal of Oncology Practice e703
Cost Conversations in Cancer
Used with permission. Copyright © American Society of Clinical Oncology 2019. All rights
reserved.

More Related Content

PPTX
Balance etween quality and cost
DOCX
A Review of Literature Addressing the Use of APRN Run Clinics to Decrease Cro...
PDF
Patient Related Barriers Associated with Under Enrollment in Hospice: A Review
PDF
Colorectal Cancer Screening
PDF
HSRPP 2015 IJPP pain
PDF
Bridging the diversity gap in Clinical Trials
PDF
Conducting behavioral-intervention-research-rural-communities-nhc-16-101
PDF
Evaluation of Patient Satisfaction in Relation to Patient Factors in Surgical...
Balance etween quality and cost
A Review of Literature Addressing the Use of APRN Run Clinics to Decrease Cro...
Patient Related Barriers Associated with Under Enrollment in Hospice: A Review
Colorectal Cancer Screening
HSRPP 2015 IJPP pain
Bridging the diversity gap in Clinical Trials
Conducting behavioral-intervention-research-rural-communities-nhc-16-101
Evaluation of Patient Satisfaction in Relation to Patient Factors in Surgical...

What's hot (20)

PDF
2010 Oncology Nursing Society Congress
PDF
NPAF Clinical Pathways White Paper July 2015
PDF
Time for Quality Measures to Get Personal
PDF
Update in hospice_and_palliative_care
PDF
s12913-015-0927-8
PDF
Transplant White Paper Final
PDF
Health System and Beneficiary Costs Associated With Intensive End-of-Life Med...
PDF
Multidisciplinary Approach to Prostate Cancer and Changes in Treatment Decisi...
PPT
Weitzman 2013 Relative patient benefits of a hospital-PCMH collaboration with...
PPTX
FCCC Multi-Year Study Poster Presentation
DOCX
BSCThesis_11324066
PDF
manajemen rumah sakit 5
PDF
acm%2E2014%2E0041
PDF
Is complementary and alternative medicine (CAM) cost-effective? a systematic ...
PDF
Academic doctors' views of complementary and alternative medicine (CAM) and i...
PDF
CMT update winter 2014
PDF
Racism as Experienced by Physicians of Color in the Health Care Setting
PDF
Designed this online educational booklet for Association of Community Cancer ...
PPTX
Survivorship Care and Care Plans: Transforming Challenges into Opportunities
2010 Oncology Nursing Society Congress
NPAF Clinical Pathways White Paper July 2015
Time for Quality Measures to Get Personal
Update in hospice_and_palliative_care
s12913-015-0927-8
Transplant White Paper Final
Health System and Beneficiary Costs Associated With Intensive End-of-Life Med...
Multidisciplinary Approach to Prostate Cancer and Changes in Treatment Decisi...
Weitzman 2013 Relative patient benefits of a hospital-PCMH collaboration with...
FCCC Multi-Year Study Poster Presentation
BSCThesis_11324066
manajemen rumah sakit 5
acm%2E2014%2E0041
Is complementary and alternative medicine (CAM) cost-effective? a systematic ...
Academic doctors' views of complementary and alternative medicine (CAM) and i...
CMT update winter 2014
Racism as Experienced by Physicians of Color in the Health Care Setting
Designed this online educational booklet for Association of Community Cancer ...
Survivorship Care and Care Plans: Transforming Challenges into Opportunities
Ad

Similar to Conversations About Financial Issues in Routine Oncology Practices: A Multicenter Study (20)

DOCX
Copyright 2014 American Medical Association. All rights reserv.docx
DOCX
#35773 Topic PROBLEM STATEMENT AND LIT REVIEW FOR END OF LIFE CAR.docx
PDF
humanastatinarticle
PPT
SLC CME- Evidence based medicine 07/27/2007
PDF
Can Decision Trees Improve the Informed Consent Process
PDF
journal research paper
PDF
ugc carelist journals
PDF
journals to publish paper
PDF
published research
PDF
scopus database journal
PDF
Advocacy and the cancer patient viewpoint
PDF
Patients' satisfaction towards doctors treatment
PDF
Patients' satisfaction towards doctors treatment
PDF
The Financial Burden.pdf
PDF
{79718629-3ee8-46c6-97ac-40acfe150694}_4549_Aligning_Cost_with_Value_Whitepaper
DOC
Physician-Patient Communication: A Dyadic Approach To C.C. Amd P.S.
PDF
Time for Quality Measures to Get Personal
DOCX
Evidence TableEvidence TablePICOT Question[Insert here]APA Sourc
DOCX
STUDY PROTOCOL Open AccessValues and options in cancer car.docx
Copyright 2014 American Medical Association. All rights reserv.docx
#35773 Topic PROBLEM STATEMENT AND LIT REVIEW FOR END OF LIFE CAR.docx
humanastatinarticle
SLC CME- Evidence based medicine 07/27/2007
Can Decision Trees Improve the Informed Consent Process
journal research paper
ugc carelist journals
journals to publish paper
published research
scopus database journal
Advocacy and the cancer patient viewpoint
Patients' satisfaction towards doctors treatment
Patients' satisfaction towards doctors treatment
The Financial Burden.pdf
{79718629-3ee8-46c6-97ac-40acfe150694}_4549_Aligning_Cost_with_Value_Whitepaper
Physician-Patient Communication: A Dyadic Approach To C.C. Amd P.S.
Time for Quality Measures to Get Personal
Evidence TableEvidence TablePICOT Question[Insert here]APA Sourc
STUDY PROTOCOL Open AccessValues and options in cancer car.docx
Ad

More from Melissa Paige (9)

PDF
Medicaid letter
PDF
Know Yourself First - Kenneth R. White, PhD, RN, FACHE
PDF
Cigna HealthSpring Rx (PDP)
PDF
What is Six Sigma? - Donald P. Lynch, Ph.D.
PDF
Cigna Limited Distribution Drugs with Reimbursement Restriction
PPTX
Medicare Patient Access Barriers
PDF
Real world suggestions
PDF
Insights from 2017 Industry Leaders: Patient Assistance and Access Programs
PPTX
CBI 2017 Coupon & Copay: Mapping the Copay Journey in Pharmacy and Medical Be...
Medicaid letter
Know Yourself First - Kenneth R. White, PhD, RN, FACHE
Cigna HealthSpring Rx (PDP)
What is Six Sigma? - Donald P. Lynch, Ph.D.
Cigna Limited Distribution Drugs with Reimbursement Restriction
Medicare Patient Access Barriers
Real world suggestions
Insights from 2017 Industry Leaders: Patient Assistance and Access Programs
CBI 2017 Coupon & Copay: Mapping the Copay Journey in Pharmacy and Medical Be...

Recently uploaded (20)

PPTX
Human Reproduction: Anatomy, Physiology & Clinical Insights.pptx
PPT
Rheumatology Member of Royal College of Physicians.ppt
PDF
B C German Homoeopathy Medicineby Dr Brij Mohan Prasad
PPTX
IMAGING EQUIPMENiiiiìiiiiiTpptxeiuueueur
PPT
nephrology MRCP - Member of Royal College of Physicians ppt
PPTX
HYPERSENSITIVITY REACTIONS - Pathophysiology Notes for Second Year Pharm D St...
PDF
Pharmaceutical Regulation -2024.pdf20205939
PDF
Comparison of Swim-Up and Microfluidic Sperm Sorting.pdf
PPTX
Effects of lipid metabolism 22 asfelagi.pptx
PPTX
Medical Law and Ethics powerpoint presen
PPTX
Epidemiology of diptheria, pertusis and tetanus with their prevention
PPTX
Electrolyte Disturbance in Paediatric - Nitthi.pptx
PDF
Lecture 8- Cornea and Sclera .pdf 5tg year
PDF
OSCE SERIES - Set 7 ( Questions & Answers ).pdf
PPTX
y4d nutrition and diet in pregnancy and postpartum
PPTX
Reading between the Rings: Imaging in Brain Infections
PDF
Lecture on Anesthesia for ENT surgery 2025pptx.pdf
PPTX
Enteric duplication cyst, etiology and management
PPTX
Radiation Dose Management for Patients in Medical Imaging- Avinesh Shrestha
PPTX
Neonate anatomy and physiology presentation
Human Reproduction: Anatomy, Physiology & Clinical Insights.pptx
Rheumatology Member of Royal College of Physicians.ppt
B C German Homoeopathy Medicineby Dr Brij Mohan Prasad
IMAGING EQUIPMENiiiiìiiiiiTpptxeiuueueur
nephrology MRCP - Member of Royal College of Physicians ppt
HYPERSENSITIVITY REACTIONS - Pathophysiology Notes for Second Year Pharm D St...
Pharmaceutical Regulation -2024.pdf20205939
Comparison of Swim-Up and Microfluidic Sperm Sorting.pdf
Effects of lipid metabolism 22 asfelagi.pptx
Medical Law and Ethics powerpoint presen
Epidemiology of diptheria, pertusis and tetanus with their prevention
Electrolyte Disturbance in Paediatric - Nitthi.pptx
Lecture 8- Cornea and Sclera .pdf 5tg year
OSCE SERIES - Set 7 ( Questions & Answers ).pdf
y4d nutrition and diet in pregnancy and postpartum
Reading between the Rings: Imaging in Brain Infections
Lecture on Anesthesia for ENT surgery 2025pptx.pdf
Enteric duplication cyst, etiology and management
Radiation Dose Management for Patients in Medical Imaging- Avinesh Shrestha
Neonate anatomy and physiology presentation

Conversations About Financial Issues in Routine Oncology Practices: A Multicenter Study

  • 1. FOCUS ON QUALITY originalcontribution Conversations About Financial Issues in Routine Oncology Practices: A Multicenter Study Rahma Warsame, MD1 ; Cassie C. Kennedy, MD1 ; Ashok Kumbamu, PhD1 ; Megan Branda, MS2 ; Cara Fernandez1 ; Brittany Kimball, MD3 ; Aaron L. Leppin, MD1 ; Thomas O’Byrne, MAS1 ; Aminah Jatoi, MD1 ; Heinz-Josef Lenz, MD4 ; and Jon C. Tilburt, MD1 QUESTION ASKED: What are the baseline frequency, content, dynamics, and patterns of cost conversations in academic medical oncology across tumor types? SUMMARY ANSWER: Cost conversations occurred 28% of the time, lasted shorter than 2 minutes on average, and were verbally acknowledged by the provider (physician or nurse practitioner) 60% of the time and acted upon 25% of the time. The major themes of the content related to the following: insurance eligibility/process, work insecurity, cost of drugs, cost used as tool to influence medical decision making, health care–specific costs, and social determinants of health. Contingency planning was the most common strategy used by clinicians to mitigate treatment-related costs or determine out-of-pocket costs. WHAT WE DID: We performed qualitative thematic analysis of 529 unique patient encounters from two National Cancer Institute–designated cancer centers and an academic-led county safety-net hospital that were audio recorded prospectively during a three-site communication study. BIAS, CONFOUNDING FACTORS: We did not capture nonverbal communications, which may have limited our understanding of the interaction between pro- viders and their patients and families/caregivers. We also did not include more than one clinic visit per patient, so cost may have been addressed before or after our recorded visit. Incidence of cost discus- sions may have been underestimated, because prior conversations may have addressed the cost is- sue. Although this was a multicenter study, African Americans or Asians comprised only 10% of the study population, and different demographic groups may face different issues. In addition, all three centers were academic based, where the resources for financial support may differ compared with community- or hospital-based practices. REAL-LIFE IMPLICATIONS: This study included multiple tumor types and demonstrates the spectrum of cost issues discussed by patients or families/caregivers with their clinicians, and the context of those conversations suggests that opportunities exist to address and improve discussion of cost in routine oncology practice. The contingency planning demonstrated by clinicians showcases the dedication of oncologists in trying to manage costs for their patients in their hurried practices and the obscurity of costs altogether. Despite willing- ness of clinicians and patients to engage in discussions, a multidisciplinary approach will likely be needed to systematically address financial issues in practice. CORRESPONDING AUTHOR Rahma Warsame, MD, Division of Hematology, Mayo Clinic, 200 First St SW, Rochester, MN 55905; e-mail: warsame.rahma@ mayo.edu. Author affiliations and disclosures are available with the complete article at jop.ascopubs.org. Accepted on April 5, 2019 and published at jop.ascopubs.org on June 4, 2019: DOI https://doi.org/10. 1200/JOP.18.00618 Volume 15, Issue 8 451
  • 2. FOCUS ON QUALITY originalcontribution Conversations About Financial Issues in Routine Oncology Practices: A Multicenter Study Rahma Warsame, MD1 ; Cassie C. Kennedy, MD1 ; Ashok Kumbamu, PhD1 ; Megan Branda, MS2 ; Cara Fernandez1 ; Brittany Kimball, MD3 ; Aaron L. Leppin, MD1 ; Thomas O’Byrne, MAS1 ; Aminah Jatoi, MD1 ; Heinz-Josef Lenz, MD4 ; and Jon C. Tilburt, MD1 abstract PURPOSE To describe the frequency, content, dynamics, and patterns of cost conversations in academic medical oncology across tumor types. PATIENTS AND METHODS We reviewed 529 audio recordings between May 3, 2012, to September 23, 2014, from a prospective three-site communication study in which patients at any stage of management for any solid tumor malignancy were seen in routine oncology appointments. Recordings were deidentified, transcribed, and flagged for any mention of cost. We coded encounters and used qualitative thematic analysis. RESULTS Financial issues were discussed in 151 (28%) of 529 recordings. Conversations lasted shorter than 2 minutes on average. Patients/caregivers raised a majority of discussions (106 of 151), and 40% of cost concerns raised by patients/caregivers were not verbally acknowledged by clinicians. Social service referrals were made only six times. Themes from content analysis were related to insurance eligibility/process, work insecurity, cost of drugs, cost used as tool to influence medical decision making, health care–specific costs, and basic needs. Financial concerns influenced oncology work processes via test or medication coverage denials, creating paperwork for clinicians, potentially influencing patient involvement in trials, and leading to medication self-rationing or similar behaviors. Typically, financial concerns were associated with negative emotions. CONCLUSION Financial issues were raised in approximately one in four academic oncology visits. These brief conversations were usually initiated by patients/caregivers, went frequently unaddressed by clinicians, and seemed to influence medical decision making and work processes and contribute to distress. Themes identified shed light on the kinds of gaps that must be addressed to help patients with cancer cope with the rising cost of care. J Oncol Pract 15:e690-e703. © 2019 by American Society of Clinical Oncology INTRODUCTION The cost of cancer care in the United States is pro- jected to balloon to $157 billion by 2020.1,2 This cost is transferred to patients, resulting in financial burden, increased declarations of bankruptcy, decreased ad- herence to treatment, poorer quality of life, and worse survival.3,4 Although aware of financial issues, oncol- ogists feel ill equipped to address them.5-8 In an effort to aid oncologists in addressing cost, the ASCO Value Framework highlights the toxicity and quality of life impact of care costs,9,10 and the National Compre- hensive Cancer Network (NCCN) evidence blocks now take cost into consideration.11 Although these initia- tives may not yet be suited for routine clinical use and may focus too heavily on comparing costs of two treatments (ASCO) or on costs of medications (NCCN), they highlight the need for specificity about how cli- nicians and patients broach this subject. Little is known about the actual content of discussions about costs and other financial issues between pa- tients and providers in real-world practice. Without this insight, it is difficult to offer improved training or devise interventions to adequately address costs in oncology care. Although the landscape of addressing value and cost of care in oncology is rapidly evolving, to shed some light on the broad range of economic stressors in cancer care and begin to gain insights into what to do about them, we turned to clinical conversations in real time. In this study, we sought to describe the baseline frequency, content, dynamics, and patterns of cost conversations in diverse academic settings using qualitative and quantitative methods. ASSOCIATED CONTENT Appendix Author affiliations and support information (if applicable) appear at the end of this article. Accepted on April 5, 2019 and published at jop.ascopubs.org on June 4, 2019: DOI https://doi.org/10. 1200/JOP.18.00618 e690 Volume 15, Issue 8
  • 3. PATIENTS AND METHODS Design We analyzed audio recordings of clinical interactions from three different oncology clinics. Recordings were collected as part of a three-site prospective parent study.12 This study was approved by the Mayo Clinic and University of Southern California institutional review boards. Encounters in the parent study were routine oncology visits between patients at any stage of the cancer continuum (new di- agnosis, active therapy, surveillance, or end stage) and their clinicians. Participants agreed to have their encoun- ters recorded without knowledge of the hypotheses of the study (eg, only that this was a communication study). Other details about the parent study were published previously.12 For this analysis, we characterized communication about cost operationalized as any discussion of financial issues in routine oncology encounters between clinicians and their patients/lay caregivers. Participants Clinicians were eligible if they practiced at least once per week. They were recruited from three different sites: an Upper Midwest National Cancer Institute–designated cancer center, a Southern California National Cancer Institute–designated university cancer center, and a Southern California county hospital site affiliated with that cancer center that functions as a safety-net hospital. Clinicians provided written consent and completed a base- line survey that included demographic and professional characteristics. Patients were eligible if they had a biopsy-proven solid tumor, were age 18 years or older, and spoke English or Spanish. They provided written consent. Hospice patients were excluded. Accompanying family members, lay care- givers, or companions provided verbal consent. Patients completed baseline surveys including demographic char- acteristics and health literacy.13,14 Data Collection An audio recorder was placed in the clinic room by a study coordinator at the beginning of the visit and it recorded throughout; the clinician or patient could stop recording at any time. Data were collected between May 3, 2012, and September 23, 2014. Recorders were kept in a Health Insurance Portability and Accountability Act–approved locked container and transferred via restricted access servers or encrypted universal serial bus drives. Pro- fessional interpreters translated Spanish transcripts into English. Qualitative Analysis Trained study staff screened and time stamped all 529 individual patient recordings for discussions of financial issues. Any ambiguity in what constituted an instance of financial issue discussion was resolved in consultation with the principal investigator (J.C.T.). A coinvestigator (R.W.) listened to all patient recordings flagged for cost/financial issues. Each cost conversation/transcript represents a unique patient. Any mention of cost-related aspects in transcripts was considered a cost conversation, whether the conversation was consecutive or intermittent in the transcript. Total time of a cost conversation was the cu- mulative time focused on cost during the entire recording. Qualitative content analysis and descriptive statistics were used to summarize participant characteristics and con- versation content. Three investigators (R.W., C.C.K., J.C.T.) independently read a randomly selected subset of 15 transcripts (five from each site) to identify preliminary themes. Candidate themes were compared and revised in person to achieve consensus and were used to create a preliminary codebook. Two investigators (R.W., C.C.K.) then independently read and coded all the transcripts to identify main themes as well as key structural features of the conversations. For each recording, we identified who initiated the cost conversation (defined as the person who explicitly stated any cost-related issue), how long the conversation lasted, and whether the issue was addressed by the clinician (defined as verbal acknowledgment of the issue). Analysis occurred by iterative discussions and summary memos during coding. All codes were compared, and consensus was achieved. New themes were added to the codebook until saturation. Statistical Analysis We used descriptive statistics of counts and frequencies for categorical data and means and standard deviations for continuous data. Clinician characteristics were compared by the percentage of encounters where cost was discussed (, 25%, 25% to 49%, and $ 50%). To test for differences in frequency with which cost was discussed among groups, we used the x2 test, unless counts were less than five, in which case Fisher’s exact test was used. For continuous outcomes, we used the Kruskal-Wallis test. All analyses were conducted in SAS software (version 9.4; Cary, NC), and tests were two sided. P values less than .05 were considered significant. RESULTS Study Population Patient characteristics are listed in Table 1. Mean age of patients who raised cost issues was 60 years (range, 22 to 93 years); a majority were female (58%) and non-Hispanic white (69%). There were no significant differences in sex, race, ethnicity, tumor location, cancer care continuum, income, education, or insurance type for patients who did or did not raise cost issues. Clinician characteristics are listed in Table 2. Clinical encounters that included cost conversations were significantly different by sex (P = .043), occurring with 27% (seven of 26) of female clinicians versus only 6% (two of 35) for male clinicians. Clinicians Journal of Oncology Practice e691 Cost Conversations in Cancer
  • 4. who discussed cost in at least 50% of their encounters also had fewer years in practice (P = .03). Cost Conversation Characteristics Among the 529 audio recordings, there were 151 (28%) unique patient encounters containing some mention of cost-related issues. There were 86 (26.3%) of 327 in- stances at the Upper Midwest site, 20 (26.7%) of 75 at the Southern California University site, and 45 (35.4%) of 127 at the Southern California county site. Mean duration of any cost discussion was shorter than 2 minutes (Table 3). Cost issues were raised by patient or caregiver/companion 70% of the time (106 of 151) and by clinician 25% of the time (39 of 151); both clinician and patient raised cost in the same encounter 5% of the time (six of 151) regarding two different cost-related issues. When an issue was raised, it was verbally acknowledged by the clinician 60% of the time. A specific action to address the cost issue was mentioned in 25% of instances. Six of the 151 conversa- tions resulted in social worker referral. Conversation Themes We identified six overarching themes that emerged from analyzing transcripts containing cost conversations: at- tentiveness to insurance eligibility/coverage; work concerns and employment issues; cost of drugs; cost as a tool to influence decision making; cost of specific tests, visits, or equipment; and social determinants of health. Here we illustrate these overlapping themes with excerpts from transcripts (C, P, and L represent clinician, patient, and lay caregiver, respectively). Additional excerpts high- lighting these themes are listed in Appendix Table A1 (online only). Attentiveness to insurance eligibility/coverage. Patients and caregivers were attuned to and concerned about insurance eligibility and how it would affect their care options, often developing insurance expertise they would use to inform TABLE 1. Patient Characteristics by Whether Cost Was Discussed (N = 529) Characteristic No. (%) P Discussed (n = 151) Not Discussed (n = 378) Age, years .07* Mean 57.6 59.6 SD 13.7 13.1 Sex .49† Male 67 (44.4) 154 (40.7) Female 84 (55.6) 224 (59.3) Race/ethnicity .68‡ Non-Hispanic white 103 (68.7) 262 (70.4) Non-Hispanic black 2 (1.3) 7 (1.9) Non-Hispanic Asian 8 (5.3) 13 (3.5) Non-Hispanic other 1 (0.7) 7 (1.9) Hispanic 36 (24.0) 83 (22.3) Highest education level .24‡ Less than high school 20 (13.5) 49 (13.3) High school graduate 28 (18.9) 100 (27.1) Some college/technical 47 (31.8) 87 (23.6) College graduate 24 (16.2) 53 (14.4) Postgraduate 27 (18.2) 70 (19.0) Other 2 (1.4) 10 (2.7) Annual household income, US$ .45‡ , 10,000 22 (16.3) 55 (15.8) 10,000 to , 20,000 15 (11.1) 46 (13.2) 20,000 to , 35,000 24 (17.8) 41 (11.8) 35,000 to , 50,000 20 (14.8) 52 (14.9) 50,000 to , 75,000 10 (7.4) 41 (11.8) . 75,000 44 (32.6) 113 (32.5) Primary insurance .26‡ Private only 56 (37.1) 138 (36.5) Government 6 private 91 (60.3) 237 (62.7) No coverage 4 (2.6) 3 (0.8) Tumor location .33† Breast 37 (24.5) 116 (30.7) GI 62 (41.1) 136 (36.0) Other§ 52 (34.4) 126 (33.3) Cancer care continuum .81† Initial diagnosis 8 (5.3) 22 (5.9) Early initial treatment 14 (9.3) 29 (7.7) Mid initial treatment 33 (21.9) 79 (21.1) Post-treatment, survivorship, or remission 46 (30.5) 136 (36.3) (continued in next column) TABLE 1. Patient Characteristics by Whether Cost Was Discussed (N = 529) (continued) Characteristic No. (%) P Discussed (n = 151) Not Discussed (n = 378) Recurrence; undergoing treatment 44 (29.1) 93 (24.8) End-stage disease 6 (4.0) 16 (4.3) NOTE. Not all numbers add up to 529 because of missing values. Abbreviations: SD, standard deviation; US$, United States dollars. *Kruskal-Wallis test. †x2 test. ‡Fisher’s exact test §Other: brain (n = 17), genitourinary (n = 39), gynecologic (n = 25), head and neck (n = 14), lung (n = 35), melanoma (n = 21), sarcoma (n = 23) and miscellaneous (n = 4). e692 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8 Warsame et al
  • 5. their clinicians. Pertinent topics included insurance ap- proval, anticipated denials, and appeal writing to minimize treatment delays. Insurance complexities were entangled with emotional distress and frustration. C: So don’t be worried. And, you know, it’s frustrating, to sometimes hear stories like that you know, the preauthorization and anxiety… P: Yeah, that is enough, I was a basket case and [insurance provider] were probably like “what is she freaking out, crying?” C: I’m really sorry. I wish our health care system would be different. For many, the payers influenced the timing and number of clinician visits and test ordering or treatment regimens. TABLE 2. Clinician Characteristics by Frequency of Encounters With Cost Conversations Characteristic No. (%) P Frequency (%) Total (n = 61) < 25 (n = 18) 25-49 (n = 34) ‡ 50 (n = 9) Sex .043* Male 13 (72.2) 20 (58.8) 2 (22.2) 35 (57.4) Female 5 (27.8) 14 (41.2) 7 (77.8) 26 (42.6) Age, years .11† Mean 41.3 42.1 34.2 40.7 SD 10.4 10.5 4.1 10.0 Median 38.5 38 33 38 Range 28-67 29-66 29-40 28-67 Race/ethnicity .38* Non-Hispanic white 13 (72.2) 23 (67.6) 3 (33.3) 39 (63.9) Non-Hispanic black 0 (0.0) 1 (2.9) 0 (0.0) 1 (1.6) Non-Hispanic Asian 4 (22.2) 7 (20.6) 4 (44.4) 15 (24.6) Non-Hispanic other 0 (0.0) 2 (5.9) 1 (11.1) 3 (4.9) Hispanic 1 (5.6) 1 (2.9) 1 (11.1) 3 (4.9) Type .27* MD consultant 11 (61.1) 16 (47.1) 2 (22.2) 29 (47.5) MD fellow 6 (33.3) 12 (35.3) 4 (44.4) 22 (36.1) NP 1 (5.6) 6 (17.6) 3 (33.3) 10 (16.4) Formal training/coursework in cancer communication .46* Yes 3 (16.7) 11 (32.4) 3 (33.3) 17 (27.9) No 15 (83.3) 23 (67.6) 6 (66.7) 44 (72.1) Years in practice .03† Mean 14.9 13.7 6.3 13.0 SD 10.8 10.0 4.7 10.0 Median 10.5 10.5 4.0 10.0 Range 3-41 0-33 2-16 0-41 Encounters per clinician .22† Mean 8.6 9.2 6.8 8.7 SD 3.6 3.0 3.8 3.4 Median 9 8 5 8 Range 1-15 3-15 2-14 1-15 Abbreviations: MD, medical doctor; NP, nurse practitioner; SD, standard deviation. *Fisher’s exact test. †Kruskal-Wallis test. Journal of Oncology Practice e693 Cost Conversations in Cancer
  • 6. P: Yesterday I got here and [state health maintenance organization] weren’t going to let me have a CT [computed tomography] scan; they weren’t going to let me have my appointment today because they informed me it is the patient’s responsibility to obtain the prior authorization from my doctor. Given the obscurity of associated costs, a frequent but peculiar practice involved sending a so-called test order as a technique to figure out cost and/or coverage for a given intervention being contemplated. If that test resulted in a prohibitive price tag (discoverable only after it had been ordered), they might repeat with a different intervention order or appeal the original test ordered with telephone calls or letters. This form of workaround to ascertain the out-of- pocket cost of a test was common. Work concerns and employment issues. Work concerns included current employability (not being able to perform one’s current work), early termination, work restriction/ accommodation, ability to get time off for medical visits, timing of disability application, and fears regarding future employability (not being able to obtain future work when healthy). Younger patients expressed suspicions of em- ployers’ terminating workers with high health care costs or those viewed as a liability in the workplace. P: They’re trying to get rid of all of us at work that have health-related problems. A preponderance of conversation excerpts in this theme focused on assuring that paperwork was signed or dis- ability eligibility considerations were addressed. Because of the US insurance system, work security concerns were enmeshed with fears of losing insurance coverage altogether. P: I’m afraid of losing my job and not having health insurance since no one else (insurance company) will take someone with a later stage cancer unless the national health care plan comes into effect. Um if I’m on disability. Would I even qualify for disability at this stage? Discussion about medical leave also precipitated conver- sations about retirement or disability. Early retirement was common but not necessarily viewed negatively, because some patients welcomed the opportunity to have more time to spend with loved ones and coordinate their care, not- withstanding the untimely and tragic circumstances. P: Yeah, I was getting kind of burnt out in my job. It was getting pretty stressful. So this is kind of a strange little retirement, but I’m okay with it. Cost of drugs. Costs of cancer drugs, supportive care medications, and even over-the-counter medications posed challenges. Patients and clinicians discussed high costs, copays, and unpredictable coverage. When cost of drugs was raised by clinicians, it was frequently done to caution patients about the potential copays or delays in obtaining treatment. Clinicians frequently encouraged pa- tients to contact their insurance providers before filling the prescriptions to find out how much it would affect them. C: This issue becomes…it’s…it’s incredibly expen- sive and sometimes, if you have a copay or things like that, it’s just not feasible to pay for months and months of this. P: The shot. So what does it cost? C: So, everybody’s different. It depends on your copay. Similar to ordering tests or other interventions, there was a general sense of frustration on the part of the clinicians about the obscurity of medication costs and coverage in- formation. In one instance with an anticoagulant, two so- called test prescriptions for low molecular weight heparin were given, along with one test prescription for warfarin, to see which was affordable. These workarounds involving TABLE 3. Duration of Discussions Characteristic No. (%) Upper Midwest (n = 86) Southern California (n = 20) Southern California County (n = 45) Length of encounter, minutes Mean 29.7 15.2 14.9 SD 14.1 10.4 8.1 Cost conversation length, minutes Mean 1.8 1.2 1.5 SD 1.8 0.9 1.1 Clinician initiated 28 (33) 1 (5) 10 (22) Patient or caregiver initiated 54 (64) 18 (90) 34 (76) Both patient and caregiver initiated 3 (3) 1 (5) 1 (2) Abbreviation: SD, standard deviation. e694 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8 Warsame et al
  • 7. multiple prescriptions for medications and elaborate con- tingency planning for treatment recommendations on the basis of cost information were commonly used to address issues (if they were addressed), potentially causing con- fusion for patients. Patients displayed a spectrum of reactions to the cost of medications, from not wanting to hear the cost, because that would put a price tag on their life, to wanting to limit the number of pills filled at the pharmacy to avoid paying for unused medications. P: Well, I ain’t gonna pay no 30 days if I’ll be dead by that time. One patient rationed and stockpiled targeted chemother- apeutic agents in hopes of bartering them for other drugs. Patients frequently asked for less than a 30-day supply, especially with as-needed supportive medications, to get by on the minimum required. Cost used as a tool to influence decision making. Clinicians used cost of cancer treatments as a negotiating tool (ie, a means to convince patients of recommenda- tions). For instance, when a clinician thought cheaper chemotherapy was better than newer targeted agents, the price tag helped persuade patients. C: The thing is, is because a pill is, um, like $20,000 a month or $10,000 a month, um, and chemotherapy is cheaper, they might not approve it. So your only choice might be the chemotherapy. P: Well, let’s try it. Clinical trials and research participation were also rec- ommended as cost-saving mechanisms for patients. It would be a win-win to obtain treatment that was otherwise unavailable and generally at no additional cost for the experimental regimen. P: And would it be a study? C: It’ll be a study, and then it will be free because I’m raising dollars. You know, I’m beggin’ Tom, Dick, and Harry multiple times to give me money to do that. Clinicians also invoked cost to discuss hospice, because medications, hospitalizations, and support could be cov- ered, generally be at little or no additional expense (Ap- pendix Table A1). Cost of specific cancer treatment–related interventions. It was common to have specific interventions or even the cost of parking be discussed. There were times when patients would become emotional about the cost of imaging or why computed tomography was performed instead of positron emission tomography/computed tomography, fearing that they were undergoing an inferior scan because of the expense associated with the positron emission tomography, which insurance would sometimes refuse to cover. C: The other thing is the, uh, cost. You know, some patients say that you know my—I’ve got a big copay, and the PET [positron emission tomography] scan is much more expensive than a, a CT [computed tomography] scan. P: Well, that hasn’t killed me so far. In this quote the clinician seems to be delicately approaching the out-of-pocket cost associated with an intervention, hypothetically to gauge the patient’s reaction. Concern regarding health care costs was not limited to scans; laboratory testing, consultations, parking, handicap stickers, and medical devices were all mentioned. Cranial prostheses (wigs) were frequently discussed, as were the associated expenses. Even with insurance subsidizing wigs through prescription, the cost of wigs could be prohibitive. Patients also commonly mentioned avoiding certain addi- tional consultative services like genetic counseling, di- eticians, and physical therapy/rehabilitation because of the associated expenses. Social determinants of health. The most challenging situ- ations we observed occurred when essential costs of basic needs (food, shelter, and clothing) were mentioned. When patients were uninsured and already struggling to meet the most basic needs, a cancer diagnosis was even more devastating. For instance, one young man struggling to find a place to sleep or even shower who underwent emergent lifesaving surgery subsequently received a bill he felt was impossible to pay. Homeless patients obtaining chemo- therapy through Medicaid still need to pay for supportive care. Other complexities related to basic needs include questions like whether a peripheral catheter is feasible in a shelter. P: I really need the help, you know… C: Yeah. P: …like you know, with funds, you know, honestly, and you know help me to, to you know, I, I try to go to these places where you know to go in and, and uh and what do you call it? And, and go and get a warm meal and, and take a shower and go to sleep there and everything. These conversations were associated with the most emo- tional distress. DISCUSSION In this study, clinicians and patients described in their own words how they navigate financial matters. We found that cost discussions were not infrequent; the issue of cost was most often raised by patients/caregivers, but it often went unaddressed when raised. The average duration of a cost conversation was brief. Patients who brought up cost were similar to the entire cohort, suggesting the likely ubiquity of financial concerns. Clinicians who did bring up cost were more likely to be female and have fewer years in practice. Journal of Oncology Practice e695 Cost Conversations in Cancer
  • 8. Cost conversations that did occur demonstrated atten- tiveness to insurance eligibility processes, work security and employment issues, cost of medications or health care specifics, influence on decision making or a clinical care plan, and threats to basic needs. Discussing money or any socioeconomic constraint on care is rarely easy for clinicians, especially while simultaneously trying to address clinical challenges. Balancing the emo- tions of the patient and family/caregiver can be difficult and require care and skill. However, the cost of cancer care is a topic that seems unavoidable in contemporary oncology practice. This may explain why younger clinicians were more likely to discuss these topics, because the current health care climate is inextricably linked to finances. Similar to our study, the study by Hunter et al15 assessed cost conversations in 677 breast cancer clinic visits with phy- sicians and found cost was mentioned in one in five clinic visits; these conversations were short, lasting less than 1 minute, and focused on cost-reducing strategies. How- ever, in contrast to that study, we found that clinicians raised cost issues much less commonly than patients (30% v 59% in the Hunter et al15 study). In addition, providers were less likely to address cost-related issues (only 25% of the time v nearly 40% in the Hunter et al15 study). This discordance could be a result of some important differ- ences between our study and that by Hunter et al.15 Our study occurred predominantly at academic sites, included all cancer types, had a higher rate of uninsured patients (3.2% v 0.004% in the Hunter et al15 study), and included advanced-practice provider visits in addition to physician visits. Moreover, our study goes into depth to characterize the content of discussions between patients with cancer, caregivers, and providers; our study also included patients with multiple tumor types, making it relevant for patients with cancer in general. Other single-center studies have demonstrated financial issues are broached between 14% and 58% of the time.6-8 In contrast, patient opinion studies have suggested that patients want cost to be included in oncology visits more (52% to 96%).6,7,16-18 Therefore, there seems to be a disconnect between oncologists’ desire to address cost, patient expectations, and actual occurrence of these discussions. Our data demonstrate significant concern across care contexts and clinical populations about the impact of a cancer diagnosis on overall financial stability and so- cioeconomic well-being of patients and families. How to afford care manifests as several financial issues in con- versations. Emotional distress associated with these con- cerns was frequently evident. Most clinicians feel they have some responsibility in dis- cussing and containing costs of care.19,20 Although gen- erally sympathetic, clinicians frequently did not take direct action in response. Clinicians addressed cost if it directly influenced their decision making or played into their per- suasive strategy (eg, clinical trial recruitment or therapy choice). There seems to be an intricate and delicate game that occurs when clinicians address financial matters, creating workarounds to address patient needs. There were several instances when insurance coverage was unknown for an intervention, and a variety of scenarios played out to determine coverage. Although issues were only acted upon 25% of the time, the most common way to address or preempt cost issues was contingency planning, either with a multiple parallel plans approach or via sequential so- called test orders. This shows there is dedication to miti- gating financial issues when direction of clinical manage- ment is affected. The exhausting clinical burden of this type of contingency care planning needs to be acknowledged and could adversely influence adherence and treatment response. Our data support a growing concern that barriers exist for patients and clinicians robustly and routinely en- gaging in conversations about financial matters in cancer care that result in concrete help. Barriers may include lack of time, lack of training on the topic, and unknown strategies to address financial issues if asked. In our study, when financial issues were raised, direct action was taken in only 25% of cases, and 40% of the time, no verbal acknowledgment was given. Good communication and reflexive listening where patients are acknowledged and validated are simple but powerful strategies to help validate financial concerns and be supportive of patients’ struggles even when a resolution is not offered. Evidence in physician and patient communi- cation supports this strategy, as do our recordings.21,22 Clinicians must be aware of the general costs of care that they prescribe to prepare patients for potential out-of- pocket expenses.22 Verbal support and validation without action by clinicians suggests discomfort or unfamiliarity with resources to address concerns, as has been similarly reported in other studies.6,23 It is also possible that clini- cians may have a fundamental issue with how to appro- priately manage fiduciary responsibility toward patients’ best interests and take into consideration the cost of care.24 Communication skills can be improved and empower cli- nicians to address an array of psychosocial behaviors.25 Therefore, ASCO has released a guideline on the cost of cancer care, intended to help physicians navigate these complex and intricate discussions.26,27 Additional recom- mendations to address financial concerns from the litera- ture and our audio recordings include referral to social services, which can help patients with counseling and coping strategies as well as benefits assessment for in- surance and disability paperwork, pharmacy consultations to manage medications and drug interactions and find equivalent generics, and referral to patient navigators, such as the American Cancer Society, which can help identify resources to support patients, including grants and funding that can be used to mitigate costs.22,28,29 There has also been increased focus on and recognition of the challenge of cancer care financially for patients and society in the last e696 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8 Warsame et al
  • 9. 5 years. Recently, there have been several societal de- velopments to help clinicians address the cost of cancer care, such as the ASCO Value Framework, which provides the relative value of various cancer treatments compared with clinical trial data; the NCCN evidence blocks, which include consideration of cost in treatment choices; and the Choosing Wisely campaigns, which recommend ways to minimize waste in various specialties, including hematology and oncology.11,25,26 These campaigns highlight the in- creasing attention on addressing the cost of cancer care and supporting clinicians who undoubtedly are involved in helping patients navigate these situations but may not be best equipped to tackle them. Moreover, physicians may not be the ideal people to mitigate costs; there is evidence that use of financial navigators can help patients manage out-of-pocket expenses.29,30 There is opportunity for con- tinued improvement in tackling financial costs in cancer care, and multiple stakeholders in addition to physicians will be necessary to adequately address this issue. This multicenter study with a large number of observations nevertheless has limitations. The recorded conversations in this study were completed by September 23, 2014. It is possible that some aspects of cost conversations between patients and clinicians have changed since our data col- lection. However, examining temporal changes in how conversations occur, particularly in the wake of emerging policy discussions, could shed additional light on how those policy initiatives are playing out in practice. Our conver- sations were limited to those between a patient and his or her clinician. We did not capture duration of patients’ treatment or any conversations between patients and fi- nancial counselors, pharmacists, or social workers. Anal- ysis was performed independently and in duplicate and included a content expert and a clinician noncontent expert to increase trustworthiness of our inferences; however, qualitative analyses are not generalizable to an entire population. Moreover, although our sample included 25% Hispanic/Latino participants, African Americans or Asians comprised less than 10% of patients. Different demographic subgroups may face different financial barriers. In ad- dition, we did not capture nonverbal communication behaviors. Last, we captured one clinic visit per patient; cost issues may have been addressed before or after this visit. In conclusion, our findings add to a growing body of lit- erature on financial toxicities in oncology and broaden the categories that inform that literature. The frequency with which financial issues were raised and the context of those conversations suggest opportunities to improve discussion of cost in routine oncology practice. High-quality conver- sations that include cost are essential in choosing treat- ments, calibrating care to the life of the patient. AFFILIATIONS 1 Mayo Clinic, Rochester, MN 2 University of Colorado, Denver, CO 3 University of Minnesota, Minneapolis, MN 4 University of Southern California, Los Angeles, CA CORRESPONDING AUTHOR Rahma Warsame, MD, Division of Hematology, Mayo Clinic, 200 First St SW, Rochester, MN 55905; e-mail: warsame.rahma@mayo.edu. AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST AND DATA AVAILABILITY STATEMENT Disclosures provided by the authors and data availability statement (if applicable) are available with this article at DOI https://doi.org/10.1200/ JOP.18.00618. AUTHOR CONTRIBUTIONS Conception and design: Rahma Warsame, Aminah Jatoi, Jon C. Tilburt Collection and assembly of data: Rahma Warsame, Ashok Kumbamu, Cara Fernandez, Aminah Jatoi Data analysis and interpretation: Cassie C. Kennedy, Ashok Kumbamu, Megan Branda, Aaron L. Leppin, Brittany Kimball, Thomas O’Byrne, Aminah Jatoi, Heinz-Josef Lenz, Jon C. Tilburt Manuscript writing: All authors Final approval of manuscript: All authors Accountable for all aspects of the work: All authors ACKNOWLEDGMENT Supported by National Institutes of Complementary and Integrative Health Grant No. R01 AT06515 (J.C.T.); the Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic (R.W., C.C.K.); Grant No. K23 HL128859 from the National Heart Blood Institute, National Institutes of Health (NIH; C.C.K.); and by Clinical and Translational Science Award No. UL1 TR000135 from the National Center for Advancing Translational Science. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH. REFERENCES 1. Mariotto AB, Yabroff KR, Shao Y, et al: Projections of the cost of cancer care in the United States: 2010-2020. J Natl Cancer Inst 103:117-128, 2011 2. Levit LA, Balogh EP, Nass SJ, et al (eds): Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC, National Academies Press, 2013 3. Dusetzina SB, Winn AN, Abel GA, et al: Cost sharing and adherence to tyrosine kinase inhibitors for patients with chronic myeloid leukemia. J Clin Oncol 32: 306-311, 2014 4. Ramsey S, Blough D, Kirchhoff A, et al: Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff (Millwood) 32:1143-1152, 2013 Journal of Oncology Practice e697 Cost Conversations in Cancer
  • 10. 5. Schrag D, Hanger M: Medical oncologists’ views on communicating with patients about chemotherapy costs: A pilot survey. J Clin Oncol 25:233-237, 2007 6. Altomare I, Irwin B, Zafar SY, et al: Physician experience and attitudes toward addressing the cost of cancer care. J Oncol Pract 12:e281-e288, 247-248, 2016 7. Kelly RJ, Forde PM, Elnahal SM, et al: Patients and physicians can discuss costs of cancer treatment in the clinic. J Oncol Pract 11:308-312, 2015 8. Zafar SY, Chino F, Ubel PA, et al: The utility of cost discussions between patients with cancer and oncologists. Am J Manag Care 21:607-615, 2015 9. Shields AL, Hao Y, Krohe M, et al: Patient-reported outcomes in oncology drug labeling in the United States : A framework for navigating early challenges. Am Health Drug Benefits 9:188-197, 2016 10. Schnipper LE: ASCO task force on the cost of cancer care. J Oncol Pract 5:218-219, 2009 11. National Comprehensive Cancer Network: NCCN Evidence Blocks. https://www.nccn.org/evidenceblocks/ 12. Kimball BC, James KM, Yost KJ, et al: Listening in on difficult conversations: An observational, multi-center investigation of real-time conversations in medical oncology. BMC Cancer 13:455, 2013 13. Dyer N, Sorra JS, Smith SA, et al: Psychometric properties of the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Adult Visit Survey. Med Care 50:S28-S34, 2012 (suppl) 14. Locke DEC, Decker PA, Sloan JA, et al: Validation of single-item linear analog scale assessment of quality of life in neuro-oncology patients. J Pain Symptom Manage 34:628-638, 2009 15. Hunter WG, Zafar SY, Hesson A, et al: Discussing health care expenses in the oncology clinic: Analysis of cost conversations in outpatient encounters. J Oncol Pract 13:e944-e956, 2017 16. Bestvina CM, Zullig LL, Rushing C, et al: Patient-oncologist cost communication, financial distress, and medication adherence. J Oncol Pract 10:162-167, 2014 17. Kaser E, Shaw J, Marven M, et al: Communication about high-cost drugs in oncology: The patient view. Ann Oncol 21:1910-1914, 2010 18. Meisenberg BR, Varner A, Ellis E, et al: Patient attitudes regarding the cost of illness in cancer care. Oncologist 20:1199-1204, 2015 19. Tilburt JC, Wynia MK, Sheeler RD, et al: Views of US physicians about controlling health care costs. JAMA 310:380-388, 2013 20. Patel MR, Shah KS, Shallcross ML: A qualitative study of physician perspectives of cost-related communication and patients’ financial burden with managing chronic disease. BMC Health Serv Res 15:518, 2015 21. Ranjan P, Kumari A, Chakrawarty A: How can doctors improve their communication skills? J Clin Diagn Res 9:JE01-JE04, 2015 22. Zafar SY, Newcomer LN, McCarthy J, et al: How should we intervene on the financial toxicity of cancer care? One shot, four perspectives. Am Soc Clin Oncol Educ Book 37:35-39, 2017 23. Berry SR, Bell CM, Ubel PA, et al: Continental divide? The attitudes of US and Canadian oncologists on the costs, cost-effectiveness, and health policies associated with new cancer drugs. J Clin Oncol 28:4149-4153, 2010 24. de Kort SJ, Kenny N, van Dijk P, et al: Cost issues in new disease-modifying treatments for advanced cancer: In-depth interviews with physicians. Eur J Cancer 43:1983-1989, 2007 25. Gilligan T, Coyle N, Frankel RM, et al: Patient-clinician communication: American Society of Clinical Oncology consensus guideline. J Clin Oncol 35:3618-3632, 2017 26. Meropol NJ, Schrag D, Smith TJ, et al: American Society of Clinical Oncology guidance statement: The cost of cancer care. J Clin Oncol 27:3868-3874, 2009 27. Schnipper LE, Davidson NE, Wollins DS, et al: Updating the American Society of Clinical Oncology Value Framework: Revisions and reflections in response to comments received. J Clin Oncol 34:2925-2934, 2016 28. Kopolovic I, Conter HJ, Hicks LK: ‘Choosing Wisely’ campaigns from ASCO and ASH: A review for clinicians in hematology and oncology. https:// www.gotoper.com/publications/ajho/2015/2015dec/choosing-wisely-campaigns-from-asco-and-ash-a-review-for-clinicians-in-haematology-and-oncology 29. Simon S: Patient navigators help cancer patients manage care. https://www.cancer.org/latest-news/navigators-help-cancer-patients-manage-their-care.html 30. Yezefski T, Steelquist J, Watabayashi K, et al: Impact of trained oncology financial navigators on patient out-of-pocket spending. Am J Manag Care 24(5 Suppl): S74-S79, 2018 n n n e698 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8 Warsame et al
  • 11. AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST Conversations About Financial Issues in Routine Oncology Practices: A Multicenter Study The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html. Heinz-Josef Lenz Honoraria: Merck Serono, Roche, Bayer HealthCare Pharmaceuticals, Boehringer Ingelheim Consulting or Advisory Role: Merck Serono, Roche, Pfizer Travel, Accommodations, Expenses: Merck Serono, Bayer HealthCare Pharmaceuticals, Roche No other potential conflicts of interest were reported. Journal of Oncology Practice e699 Cost Conversations in Cancer
  • 12. APPENDIX TABLE A1. Representative Quotes Based on Different Themes Topic Quote Heightened awareness/ attentiveness to insurance eligibility and process Precertification C: We will likely need a cat [CT] scan anyway, so let’s get a cat [CT] scan. P: Whatever we need to do we need to make sure it is precertified. So I do not get into any trouble. C: I’ll order that up and then have somebody talk to you about the certification stuff. Insurance approval/ appeal C: Enzalutamide is the next step but it is not FDA approved for patients before chemo[therapy]. We want to do this medication because you are not a candidate for chemotherapy. When are you seeing your local oncologist? P: Next week Tuesday. C: We will tell him to put this in his note when he gives you the prescription. Also you should call your insurance. 9/10 times we are pretty successful in convincing the insurance companies to go with this reasoning. If the insurance company says no, tell your oncologist to call us. He should appeal, we can send articles and support as to why it should be used. Prior authorization P: Okay. Well, I have a scan…I had a scan here, this time, but I was actually quite worried yesterday because with the insurance I have, I have the state insurance, but I’m not from this state. So with the HMO that I had to have when I was seeing the other cancer center, they made me switch to another HMO. That clinician is not up here and so my original oncologist had told me that he had done the preauthorization and that we should be good to go…la, dah, da. Well, now, finally … but long story short, yesterday I got here and weren’t going to let me have a CT scan; they weren’t going to let me have my appointment today because they informed me it is the patient’s responsibility to obtain the prior authorization from my doctor, which I was never, ever told that and it is like, well, I don’t get papers or anything, how am I to do this? Well, so then I was talking to my mom about this; maybe it would be easier if I did have my CT scan and my blood work there and then come up here for my appointment. C: Perfectly fine. Insurance eligibility C: So don’t be worried. And, you know, it’s frustrating, to sometimes hear stories like that you know, the preauthorization and anxiety… P: Oh, yeah, because we were literally…we were in the parking ramp already. C: On top of your having to deal with this disease. P: Yeah, that is enough, I was a basket case and they were probably like what is she freaking out crying? It is because you have no idea, like, had I not known until I talked to you right now, I don’t know what my status is. C: I’m really sorry. I wish our health care system would be different. Time intensive C: Oh, listen. Today I spent no less than 2 hours trying to explain to an insurance company in California to do the right thing and they still would not do it. Preexisting condition P: Having just gone through that because we were on Cobra insurance in the middle of my cancer and it expired, and had to find new insurance, which is really hard when you are in the middle of a cancer experience, and it was really hard because nobody wants you. We were able to find one and it is fine and we can afford it but it is not cheap, having breast cancer and being uninsured is a whole lot worse than the premiums. Fear of insurance loss P: Because that also becomes on the record. I worry about insurance, that whether that will complicate either my nieces’ getting insurance, or my son or his daughter. Uncertainty of coverage timing L: We won’t know till after they’re done whether they’ll be paid for though. P: Oh, we hate that. C: Oh, I love how that works.… It’s kinda like the mortgage industry. P: Yeah C: Oh! Don’t you worry. You wanna buy a house that you can’t afford? No problem. P: I know, yeah. C: Then, bam! L: We can see how that went. (continued on following page) e700 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8 Warsame et al
  • 13. TABLE A1. Representative Quotes Based on Different Themes (continued) Topic Quote Work insecurity FMLA L: Is there any way you could help me out with the—a form so I can go back to work just in case—I, I just started my job. C: Of course. Yeah. L: My manager was cool but, you know, I just don’t wanna show up empty handed. C: No problem. Just say that you’re here with your father. Unemployment from illness P: I call my boss and I say, “Can I go back to work?” And he’s like, “As long as I get a paper.” This was in December. So he’s seen me and he goes, “Oh, my God.” He goes, “Just go home. Do something, I don’t want you to fall right here.” C: Yeah. P: And he’s like, “You don’t,” he goes, “I don’t want you to fall in here,” and he goes, “I’ll give you a cup of water, but in the parking. Go home.” Disability qualifications P: I have to work without pay. Benefits suck. My short-term disabilities there. I can’t use it. I can’t stop treatment, so I have to meet with HR today. C: Figure out what to do . P: Uh-huh, yeah. C: What’s the reason behind that they’re not giving you disability or short term now? P: Cuz it ran out and I went back to work. C: Sure, then all this happened. P: Yeah and I didn’t qualify for long-term disability. I used to be so proud working for, but in a situation like, I’m not. Suspicion of job loss P: They’re trying to get rid of all of us at work that have health-related problems. Fear of job loss P: I’m afraid of losing my job and not having health insurance since no one else will take someone with a later stage cancer unless the national health care plan comes into effect.… Um, if I’m on disability I can get on that. Would I even qualify for disability at this stage? C: Not to my knowledge. I couldn’t sign something and I do not know. P: Okay, it doesn’t, unless my cancer comes back. C: Yeah, which we don’t want it to come back. P: I gotta figure something out. C: Okay P: Yeah, they are really trying to downsize. So we’ll see what happens. Early retirement P: Yeah, I was getting kind of burnt out in my job. It was getting pretty stressful. So this is kind of a strange little retirement, but I’m okay with it. C: Okay…well, good. Wonderful. What a beautiful perspective, you know! Cost of drugs Cost of medication L: So how much money would this be? C: Well, it could be a lot of money.… But it could be $20,000 per month. I mean that kind of thing. This ain’t—this ain’t cheap. P: That makes you think. Saving medications to barter L: I was wondering, we have a lot of Sutent. C: You’re on it, right? The Sutent. L: Yes, I was wondering if we could switch over to Avastin cuz that was what the doctor originally wanted, if somebody had it. He said you could trade. There’s a bartering system somehow… L: Stockpile it just in case they started. P: To trade it. (continued on following page) Journal of Oncology Practice e701 Cost Conversations in Cancer
  • 14. TABLE A1. Representative Quotes Based on Different Themes (continued) Topic Quote Contingency planning with medications C: So how about I give you one for a week’s worth? P: Okay. C: And then give you this one for a month. P: Okay, that’s fine. C: And if you meet with the blood clotting specialist and they feel strongly you should stay on the shot one. P: Okay. C: Then we’ll fill the…the month one. Does that make sense? Cost of drugs L: Well, by the time they get it, we’ll order it and stuff, it’ll probably take a little bit. P: Well, I ain’t gonna pay no 30 days. I’ll be dead by that time. Caution about prescription cost C: This issue becomes…it’s…it’s incredibly expensive and sometimes, if you have a copay or things like that, its just not feasible to pay for months and months of this. P: The shot. So what does it cost? C: So, everybody’s different. It depends on your copay. I know you have a different insurance, but I mean, it’s on the orders of thousands of dollars a…you know, a month. It’s, it’s very expensive. L: Thousands a month? Cost of drugs P: So can we do the treatments. C: Yep. L: We won’t know till after they’re done whether they’ll be paid for though. C: I love how that works…Oh! Don’t worry, you wanna buy a house that you can’t afford? No problem. Cost as tool to influence decision making Hospice costs C: Well, if the—the thing is, is because a pill is, um, like 20,000 dollars a month or 10,000 dollars a month, um, and chemotherapy is cheaper, they might not approve it. So your only choice might be the chemotherapy. P: Well, let’s try it. If they don’t, then I’ll come back and ha, ha, don’t have no choice. C: Why do you think we’re gonna try and talk you into hospice for our benefit? P: Didn’t necessarily say it’s for your benefit, but it’s just—I just—I don’t think I really need it. I don’t think it’s a cost I really need to— C: Is that— P: …Undertake. C: Is cost an issue?… They, they will respect your wishes and that’s what I, I wanna emphasize. They’re not gonna tell you what to do. They’re gonna help you in doing what you want to do. Recommending clinical trial with cost as incentive P: And would it be a study? C: It’ll be a study, and then it will be free because I’m raising dollars. You know, I’m beggin Tom, Dick, and Harry multiple times to give me money to do that.… You know I’m not pushing at all cuz it’s—it’s a tricky situation. Uh, we don’t have—I don’t wanna wait until then to try this. Clinical trial cost savings L: So the—the only difference is, with the clinical trial, is you would mix the drugs in the pharmacy? C: Exactly. I’d mix the drugs in the pharmacy, and it would be free for you. There would be no costs involved in it because I’d— you know, I’d provide all of this for free. Cost of health care–specific needs Scan cost C: If you don’t mind the time. The other thing is the, uh, cost. You know, some patients say that you know my—I’ve got a big copay, and the PET scan is much more expensive that a, a CT scan. P: Well, that hasn’t euthanized me so far. Wig cost P: I know that there’s, like with our insurance, up to $400 I can get a wig there. C: Okay. (continued on following page) e702 © 2019 by American Society of Clinical Oncology Volume 15, Issue 8 Warsame et al
  • 15. TABLE A1. Representative Quotes Based on Different Themes (continued) Topic Quote PET scan v CT C: But your insurance company denied the PET scan. Um, insurance companies are doing this more and more. They said, “Why are you doing a PET scan? There’s nothing suspicious on the CAT [CT] scan.” So we had to drop it or else you had to pay a few thousand dollars, so we said forget it. P: All right. C: What we’ll do is we’ll repeat another CAT [CT] scan in 3 months. You’ll bet CAT [CT]—you’ll have a CAT [CT] scan every 3 months for a year with blood work, and then we’ll go to 6 months, and then eventually to a year. And for the first year, it’ll be—you’ll be scanned every 3 months. P: All right. Will you try again for a PET scan? Cost of basic needs Homeless P: I really need the help, you know, like, you know— C: Yeah. P: …Like you know, with funds, you know, honestly, and you know help me to, to you know, I, I try to go to these places where you know to go in and, and uh and what do you call it? And, and go and get a warm meal and, and take a shower and go to sleep there and everything. C: Uh huh. P: I’m gonna be honest with you, that’s not a place for me. You know. I, I, I shower every single day and believe it or not, I shower, you know, even with the water hose as cold as it is right now, I shower like that. I’m just like, you know… Transportation P: Sure. Okay. And, um, am I able to drive here for the chemo[therapy] or should I have the American Cancer Society? C: I mean, you can—if you can drive here, you know, if you feel good you can drive, but if—but also, chemotherapy I cannot give you any guarantees because if you feel bad after that, I— P: I see. Okay. C: I’m not sure if you can drive back home on your own. P: I see. Okay. So, okay. Shelter living and chemotherapy L: The other question is does it make sense to have this outpatient or inpatient, because of his living environment. Should he receive chemotherapy in the hospital? C: This is something we do inpatient, sorry I mean outpatient. L: Right, I mean him having a line in the shelter, the shelter director my not allow it. C: I mean, he is going to have to have the line for months. Abbreviations: C, clinician; CT, computed tomography; FDA, US Food and Drug Administration; FMLA, Family and Medical Leave Act; HMO, health maintenance organization; HR, human resources; L, lay caregiver; P, patient; PET, positron emission tomography. Journal of Oncology Practice e703 Cost Conversations in Cancer
  • 16. Used with permission. Copyright © American Society of Clinical Oncology 2019. All rights reserved.