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Qualitative Inquiries


The ultimate goal of gaining understanding and knowledge for use in caring guides the

conduct any nursing research (Grove, Burns, & Gray, 2013). Evaluation of this type of evidence-

based research enables nurses to use the results to establish best practice for the nursing

profession in all care settings applications.

This type of inquiry is well suited to formulation of hypotheses and theories about areas

in which little is known. It serves evidence-based practice by discovering new aspects of human

behavior, patterns, and practices which might not be detected or well understood by quantitative


Criteria for evaluating this type of research vary from quantitative methods It also varies

between several approaches of qualitative inquiry but inductive reasoning and holistic practices

characterize all qualitative research. The inquiry should move from design, data collection, and

analysis toward hypothesis and theory formulation. There are several philosophical approaches

practiced. Concern for meaning and observation of human activities by using the researcher as

the instrument for assessing data is a characteristic which all approaches share. Interpretation

of data is based on identification of feelings, ideas, concepts, and events which have influenced

the lives of subjects in a variety of situations (Polit & Beck, 2014; Waltz, Strickland, & Lenz,


Assessment of Researcher Qualifications

Examination of criteria for evaluation of qualitative work begins with assessment of the

qualification of the researchers. In qualitative research the researcher needs to have a firm base

of understanding of the method which they plan to use including the underlying philosophy


which justifies and governs its use. Therefore, qualifications of the research team needs to be

clearly assessed (Cobb & Hagemaster, 1987).

Appropriateness of Title and Abstract

These aspects of any study should be included. The title should inform the potential

reader as to the focus of interest and approach of the inquiry. An abstract will briefly and

succinctly review essential aspects of the study making it possible or a reader to understand and

assess usefulness and applicability of the study.

Problem Statement

Statement of the problem should explain the author’s connection and access to the target

population. This might be personal or professional experience. For example, nurses

participating in outreach programs to assess incidence of iron deficiency among infants might

identify a problem in interaction patterns between parents and their infants who suffer from

colic. A nurse on an oncology ward might wish to explore the experience of grief experienced

by caregivers. The important point is that the inquiry will be structured in a way which will

begin without hypotheses about causes or other aspects of the problem but will attempt to form

conclusions about the data which will then be organized to form a conceptual framework. This

may be used to formulate hypotheses and theory.

Justification for conducting this inquiry should be discussed by the researchers. The

research gap should be explained. Lack of information about this aspect of human behavior and

beliefs and the suitability of the qualitative approach should be supported based on the nature of

the problem, the approach used, and needs in the target population. Support may come from a

review of the state of knowledge in this area. Questions about the topic under study should be

proposed (Grove, 2013) and justifiable based on the stated aims of the project (CASP, 2010)


Review of Literature

There are conflicting opinions about when the review of the literature should be done by

the qualitative researcher. In order to identify the research gap and to familiarize the reader with

the problem some qualitative approaches justify placing a review of literature at the beginning of

the work. Explanation for the study protocol by way of identifying the theoretical method – i.e.

grounded, phenomenological, or ethnographic and explanation of the significance of the problem

may be cited as a reason for placing the review at the beginning. However, other investigators

who practice this type of research object to reviewing previous evidence-based research on the

basis that it will prejudice the researcher and influence how the research will be conducted and

interpretation of data (Ryan, Coughlan, & Cronin, 2007).

There is no well-established rule for placement of the review of literature but the content

should be similar wherever it is situated. It should justify conducting the study (Sandelowski, &

Barroso, 2003). Strauss is credited for advising review of literature early in the study because it

stimulates theoretical receptivity, helps to pose questions, and adds validity to the

appropriateness of using the chosen method (McGhee, Marland, Atkinson, 2008). Previous

work should be cited, discussed, and evaluated for similarities and differences between present

and past studies, and analysis of the methods employed (School of Human Ecology –University

of Wisconsin, 2014).

Materials cited in the review should meet evidence based criteria. While important

contribution from classic literature and primary sources may be cited, most of the material

should have been published within the last 5 years. Information should be available concerning

descriptors and sources used for the search.


Philosophical Foundation

The researcher should specify the governing philosophical basis (Grove, 2013) because it

will effect evaluation of the inquiry. There are procedural differences between thinkers in

several of the qualitative approaches of inquiry. This aspect of qualitative research should be

mentioned and the position of the planned inquiry specified – for example Straussian Grounded

Theory as opposed to Glaser (Waltz, Stickland, & Lenz, 2010).

Sampling, Sample, and Ethical Considerations

Identification of the population, reason and method of selection (Chesnay, 2015),

inclusion and exclusion criteria, size, attrition rate, and relevant demographic characteristics

should be included in information about the sample (Grove, Burns, & Gray, 2013). The reader

should be informed about how the sample was accessed by the researcher. Adherence to ethical

procedures as specified by Federal Law 45 CFR 46 should be explained including justice,

respect, and beneficence in the practices used in the study (Cornell University, Undated).

Data Collection

Depending on which approach has been selected by the researcher, data collection

methods will differ. However, the specific steps of the collection procedure should be carefully

explained. The type of data, location, form and format, number and type of contacts with

subjects, method of collection, and data preservation method should be discussed. Details about

preservation of confidentiality and privacy are part of this section. Some approaches to

qualitative inquiry vary number of contacts with subjects and sample size based on emerging

data (Glaser & Strauss, 1967) in an iterative process which explores new themes as they emerge

(Frankel, 1999). This process should be discussed carefully.


Data Analysis

The reader should be advised of the complete process of data analysis. Although this

process will be different depending on which approach is being used, it should be carefully and

meticulously explained.

A portion of this section should include some discussion of the research qualifications of

the investigator and use of mechanical methods of analysis if any (De Chesnay, 2015). How data

analysis will sort categories and themes should be discussed. If computer software is being

employed it should be identified.

Another portion of data analysis should address reliability and validity. Lincoln and

Guba discussed dependability, confirmability, credibility, transferability, and authenticity as a

group of concepts known as trustworthiness (Polit & Beck, 2014). These are concepts related to

rigor or validity. Measures which specifically address these concepts depend on the particular

philosophical approach used (Cohen & Crabtree, 2008). Overall significance, relevance, impact

and utility form another set of assessment criteria formulated for measuring the value of

qualitative research (Morse, et al., 2002). Therefore the reviewer needs to become familiar with

the specific requirements of the stated philosophical approach.

The reader should be advised of methods of improving quality of the data such as

triangulation, audio-recording, reflexivity, intercoder checking, thick description, member

checking, and use of peers, expert consultants, or mentors (Morse, 2002) . Other steps which

are sometimes used are: looking for negative cases, examination of alternative explanations, and

audit of the data trail (Cohen & Crabtree, 2008; De Chesnay, 2015).


Findings, Discussion, and Implications for Best Practice

Themes, emerging concepts, hypotheses, and theories should be discussed. These

products should be exemplified by narrative from subjects in their own words (Grove, 2013).

While not commonly used, frequency data which reports how often themes are reported by

subjects will assist the reader in interpreting the data.

At this point the researcher should return to or present the review of literature.

Connections and comparisons should be drawn between past work and the present. Lessons

learned should be clearly explained. Suggestions for further research, recommended action, and

implications for best practice are discussed here.

In summary, readers need to be advised of the sound judgement of the investigators in

data analysis. Of major concern should be the way the data has been organized, how it has been

synthesized, formed into a congruent whole, and how well that is described and supported by

narrative and explanation of emerging themes, hypotheses, and theories through careful use of

their chosen philosophical approach (Polit & Beck, 2014).

Statement Related to Conflict of Interest

This statement was not found.



Critical Appraisal Skills Programme. (2010). Making sense of evidence about clinical effectiveness –

10 questions to help you make sense of qualitative research. Retrieved from:http:..www.casp-

Cobb, A. & Hagemaster, J. (1987). Ten Criteria for Evaluating Qualitative Research Proposals.

Journal of Nursing Education. 26 (4), 138-143.

Cohen, D. & Crabtree, B. (2008). Evaluaative Criteria for Qualitative Reserch in Health Care:

Controversies and Recommendations. Annals of Family Medicine. 6 (4), 331-339.


Cornell University. (Undated). 45 CFR 46.103 – Assuring compliance with this policy – research

conducted or supported by any Federal Department or Agency. Retrieved from:

De Chesnay, M. (2015). Nursing Research Using Phenomenology – Qualitative Designs and Methods

in Nursing. Springer: New York, NY

Frankel, RM. (1999). “Standards of Qualitative Research.” In BF Crabtree and WL Miller (Eds.) Doing

Qualitative Research (2nd edition) p. 341. Sage Publications: Thousand Oaks, CA Retrieved


Glaser, B. & Strauss, A. (1967). The Discovery of Grounded Theory: Strategies for Qualitative

Research. Aldine Publishing: Chicago, IL Retrieved from:


Grove, S., Burns, N., Gray, J. (2013). The Practice of Nursing Research –Appraisal, Synthesis, and

Generation of New Evidence, Seventh Edition. Elsevier: St. Louis, MO.

McGee, G., Marland, G., & Atkinson, J. (2008). Grounded theory research: literature reviewing and

reflexivity. Journal of Advanced Nursing. 60 (3), 334-342. Retrieved from:

Morse, J., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification strategies for

establishing reliability and validity in qualitative research. International Journal of Qualitative

Methods. 1 (2). Retrieved from:

Munhall, P. & Chenail, R. (2008). Qualitative Research Proposals and Reports – A Guide, Third

Edition. Jones and Bartlett: Sudbury, MA

Polit, D. & Beck, C. (2014). Essentials of Nursing Research – Appraising Evidence for Nursing

Practice, Eighth Edition. Wolters Kluwer: Philadelphia, PA.

Portland State University. (Undated). Research Paradigm. Retrieved from:

Ryan, F., Coughlan, M., & Cronin, P. (2007). Step-by-step guide to critiquing research. Part 2:

qualitative research. British Journal of Nursing. 16 (12), 738-744.

Sandelowski, M. & Barroso, J. (2003). Writing the Proposal for a Qualitative Research Methodology

Project. Qualitative Health Research. 13(6), 781-807. DOI:10.1177/1049732303255474


School of Human Ecology – University of Wisconsin. (2014). Guidelines for proposals: Qualitative

research. Retrieved


Waltz, C., Strickland, O., & Lenz, E. (2010). Measurement in Nursing and Health Research, Fourth

Edition. Springer: New York, NY.

Does Race Influence Decision Making for Advanced Heart Failure
Khadijah Breathett, MD, MS; Erika Yee, BS; Natalie Pool, PhD, RN; Megan Hebdon, DNP, RN; Janice D. Crist, PhD, RN; Shannon Knapp,
PhD; Ashley Larsen, MS; Sade Solola, MD; Luis Luy; Kathryn Herrera-Theut, BS; Leanne Zabala, MD; Jeff Stone, PhD; Marylyn M. McEwen,
PhD, RN; Elizabeth Calhoun, PhD; Nancy K. Sweitzer, MD, PhD

Background-—Race influences medical decision making, but its impact on advanced heart failure therapy allocation is unknown.
We sought to determine whether patient race influences allocation of advanced heart failure therapies.

Methods and Results-—Members of a national heart failure organization were randomized to clinical vignettes that varied by
patient race (black or white man) and were blinded to study objectives. Participants (N=422) completed Likert scale surveys rating
factors for advanced therapy allocation and think-aloud interviews (n=44). Survey results were analyzed by least absolute
shrinkage and selection operator and multivariable regression to identify factors influencing advanced therapy allocation, including
interactions with vignette race and participant demographics. Interviews were analyzed using grounded theory. Surveys revealed
no differences in overall racial ratings for advanced therapies. Least absolute shrinkage and selection operator regression selected
no interactions between vignette race and clinical factors as important in allocation. However, interactions between participants
aged ≥40 years and black vignette negatively influenced heart transplant allocation modestly (�0.58; 95% CI, �1.15 to �0.0002),
with adherence and social history the most influential factors. Interviews revealed sequential decision making: forming overall
impression, identifying urgency, evaluating prior care appropriateness, anticipating challenges, and evaluating trust while making
recommendations. Race influenced each step: avoiding discussing race, believing photographs may contribute to racial bias,
believing the black man was sicker compared with the white man, developing greater concern for trust and adherence with the
black man, and ultimately offering the white man transplantation and the black man ventricular assist device implantation.

Conclusions-—Black race modestly influenced decision making for heart transplant, particularly during conversations. Because
advanced therapy selection meetings are conversations rather than surveys, allocation may be vulnerable to racial bias. (J Am
Heart Assoc. 2019;8:e013592. DOI: 10.1161/JAHA.119.013592.)

Key Words: decision making • healthcare delivery • healthcare disparities • heart failure • heart transplant

Racial disparities persist in heart failure (HF).
1 Blacks

have the highest rates of HF and greatest mortality
compared with other ethnicities.1 Compared with whites,
blacks are less likely to receive HF medications2 and device
therapies3 and less likely to receive care by a cardiologist.4

Insurance broadening has contributed to increased access
to heart transplants among blacks but has not fully
eliminated disparities.5 Ventricular assist device (VAD)

implantation rates also remain below expected rates for

Healthcare professionals’ decision-making processes may
contribute to racial disparities in HF. A recent meta-synthesis of
medical qualitative studies concluded that physicians’ clinical
decisions were influenced by patient ethnicity.7 However, the
role of race in the decision-making process for advanced HF
therapies, such as heart transplants and VAD, is unknown.

From the Division of Cardiovascular Medicine, Department of Medicine, Sarver Heart Center (K.B., N.S.), Sarver Heart Center, Clinical Research Office (E.Y, A.L.), College of
Nursing (N.P., M.H., J.D.C., M.M.M.), Statistics Consulting Lab, Bio5 Institute (S.K.), Departments of Medicine (S.S.) and Psychology (J.S.), and Center for Population Health
Sciences (E.C.), University of Arizona, Tucson, AZ; University of Rochester, Rochester, New York, U.S. (L.L.); and University of Arizona Medical School, Tucson, AZ (K.H.-T., L.Z.).

Accompanying Tables S1 through S4 and Figure S1 are available at

This work was presented at the American Heart Association Scientific Sessions, November 16–18, 2019, in Philadelphia, PA.

Correspondence to: Khadijah Breathett, MD, MS, Sarver Heart Center, University of Arizona, 1501 N Campbell Ave, PO Box 245046, Tucson, AZ 85724. E-mail:
[email protected]

Received June 12, 2019; accepted August 9, 2019.

ª 2019 The Authors. Published on behalf of the American Heart Association, Inc., by Wiley. This is an open access article under the terms of the Creative Commons
Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-
commercial and no modifications or adaptations are made.

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The decision-making process for advanced therapies for HF
is complex. Healthcare professionals must determine the best
therapy for patients while also carefully assessing for con-
traindications for advanced HF therapies. Most contraindica-
tions to advanced therapies exist on a spectrum, and the point
at which advanced therapies should not be pursued is
subjective.8,9 Subjectivity at these decision points creates
vulnerability for racial bias.10

We sought to determine whether race influences the
decision-making process for advanced HF therapies. Quanti-
tative surveys and qualitative think-aloud interviews were
performed to understand the following: (1) general decision
process, (2) how race influences the decision process, and (3)
which factors have the greatest influence on the decision
process when considering patients of black and white race.


Study Design, Sample, and Recruitment
A simultaneous mixed-methods approach was performed from
September 2018 to February 2019 among members of the
Heart Failure Society of America, a national organization of HF
professionals, including postdoctoral trainees, nurses, phar-
macists, pharmaceutical representatives, nurse practitioners,
and physicians. Eligible members (N=1432) included all
healthcare professionals who participate in the decision-
making process for advanced HF therapies in adults in the
United States. Participants were identified through member-
ship directory (N=1929), but advanced therapy allocation roles
were not available and exclusion estimates may be underes-
timated. Self-report during consent (n=180), inaccurate e-mail
address (n=49), and electronic search (n=268) identified a total

of 497 ineligible participants. A census approach was used, in
which electronic surveys were e-mailed to all members in
repeated waves through Qualtrics. Among invitations, 422
participated (29% response rate), which is consistent with
survey responses for healthcare professionals11,12 and higher
than cardiovascular society survey response rates.13 This would
also provide a priori 99% power to detect 0.9-unit difference in
scores (1–10) with 1-unit SD for supporting advanced therapies
in black versus white men.14 Simultaneously, in-person or
videoconference think-aloud interviews were performed with
surveying among a purposeful sample of members representing
diverse ethnicities, sexes, position, and geographic institution.
Snowball sampling was used to help identify 44 professionals
for interviews.15 Trained research assistants (E.Y., A.L.)
performed, audio recorded, and collected field notes for all
interviews. Study participants provided verbal consent and
received incentives worth $10 (US dollars). This study was
approved by the University of Arizona Institutional Review
Board. The data that support the findings of this study are
available from the corresponding author on reasonable request.
To minimize the possibility of unintentionally sharing informa-
tion that can be used to reidentify private information, only a
subset of data will be available.

Participants were blinded to study objectives until participation
was complete and were randomized 1:1 to white man or black
man. Race was indicated using text, photograph, and ethnic-
sounding names.16 Photographs were selected from a normal-
ization study conducted by the primary investigator’s (K.B.)
team (S.S., L.L., K.H.T., L.Z.). The 2 study photographs differed
only by race, having similar hairstyle, clothing, and physical
build; they were similarly rated for age, attraction, intelligence,
health, facial expression, and trustworthiness (Table S1). The
vignettes were identical with the exception of race. The vignette
described a patient with end-stage HF with a complex history,
including multiple relative contraindications for advanced
therapies, such as reduced social support, reduced treatment
adherence, financial instability, and history of remote drug use,
obesity, and mild levels of diabetes mellitus, kidney dysfunc-
tion, and peripheral vascular disease (Table S2).

Survey Instrument
Participants were asked to rate on a Likert scale (1–10,
strongly disagree to strongly agree) how well individual factors
make the patient suitable for advanced HF therapies
(Figure 1). Final recommendations for heart transplant, bridge
to transplant VAD (future candidate for transplant), destina-
tion VAD (not a candidate for transplant), and no advanced
therapies were individually elicited on a Likert scale. Write-in

Clinical Perspective

What Is New?

• Interviews revealed that the decision-making process was
based on medical appropriateness, comorbidities, and
strength of the social and emotional support system.

• Compared with the white man, black race negatively
influenced the allocation of heart transplant modestly.

• The racial differences in the decision-making process for
heart transplant were more pronounced during interviews
than during surveys.

What Are the Clinical Implications?

• Race modestly influences the decision-making process for
advanced heart failure therapies.

• Further investigation should address tactics to reduce racial
bias in decision making for advanced heart failure therapies.

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responses were invited to describe key reasons for final
decisions and additional pertinent comments. Demographic
information was also collected.

Interview Guide
Think aloud, a form of cognitive interviewing, is an established
method of qualitatively evaluating the decision-making pro-
cess.17,18 The interview guide was framed on the cognitive

interview guide by Shafer and Lohse, which includes probes to
assist with thinking aloud.19 Participants were prompted
about thoughts on patient candidacy for advanced therapies
as they read through each section of the vignette (Figure 1).
Participants were asked for a final recommendation for type
of advanced therapy and about whether the participant
trusted the patient. Participants were also asked to detail how
the vignette compared with patient presentations during their
own selection meetings.

Figure 1. Interview guide and survey questions. Warm-up questions and helping participant with think
aloud were from Shafer and Lohse instructions on cognitive interviewing.19

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Statistical Analysis

Surveys were considered complete if all 18 survey factor
variables plus need for additional testing (Figure 1) and 4
outcome variables (heart transplant, bridge to transplant VAD,
destination therapy VAD, and no advanced therapies) were
given. The exception was for the paper surveys from interview
subjects for which only the 4 outcome variables were required
for inclusion (excluded 5 participants). Simple imputation
(median values) was used for missing values from the factor
variables (7 values from 5 participants). Multiple imputation
was used for missing values for participant-demographic
questions (57 missing values from 21 participants). Predictive
mean matching was used with the R package “mice.”20 For all
analyses, ordinary least squares regression was used on a
transformed response variable to account for nonnormality.
The t-test was used to compare 4 outcome results by vignette
race. A 2-stage approach was used to analyze the survey data.
This was performed in the interest of avoiding overparame-
terization with the large number of variables, as well as
because of the use of multiple imputation on the participant
demographics. First, least absolute shrinkage and selection
operator (LASSO)21 was used to perform variable selection on
the 19 factors and the interaction of each of those factors
with vignette race (a total of 38 parameters) for each
response variable. The tuning parameter for LASSO (k) was
selected via 10-fold cross validation. For each response
variable, the value of k giving mean-squared error within 1 SD
of the minimum was used. The R package “glmnet” was used
for the LASSO analysis.22 Last, once a baseline model of
important factors was established for each response, all
demographic variables and the interactions of all demographic
variables with vignette race were added. Model estimates and
SEs were based on pooled values from 20 imputations.

Think-aloud interviews underwent thematic analysis using
grounded theory while blinded to the vignette patient’s race.
Then, results were unblinded and categories were compared
according to race. The stepwise process included the
following: (1) open coding: identifying themes (patterns) until
reaching saturation (absence of new themes that designates
appropriate sample size23), (2) central phenomenon: exploring
themes to arrive at a central category, (3) axial coding:
connecting categories, and (4) selective coding: generating a
model representing the decision-making process.24 Rigor was
established through credibility (validation of interview
response with survey response), transferability (debrief with
advanced HF cardiologist [N.S.]), and confirmability (including
trained interviewers [E.Y., A.L.] and 2 independent analysts
[N.P., M.H.] who performed the entire qualitative analyses
with differences arbitrated by an independent qualitative
expert [J.C.] and the primary investigator [K.B.]).25 An audit
trail and codebook were maintained throughout the study.

Participants were randomized to white (N=204 survey, n=22
interview) and black (N=218 survey, n=22 interview) man
patient vignettes similarly across demographics (Table 1,
Table S3). Half or more of participants who completed surveys
and interviews were aged ≥40 years, men, non-Hispanic white,
cardiologist or cardiothoracic surgeons, with <11 years past
training. Participants were dispersed similarly throughout the
United Network for Organ Sharing regions (Figure S1), with the
exception of interview participants missing from region 6.

Survey Results
The favorability for heart transplant (mean rating: white, 7.08
[95% CI, 6.74–7.43]; black, 7.28 [95% CI, 6.97–7.58]), bridge
to transplant VAD (white, 7.61 [95% CI, 7.28–7.93]; black,
7.74 [95% CI, 7.44–8.05]), destination VAD (white, 6.84 [95%
CI, 6.47–7.21]; black, 7.17 [95% CI, 6.82–7.53]), and no
advanced HF therapies (white, 2.39 [95% CI, 2.15–2.63];
black, 2.23 [95% CI, 1.99–2.47]) was similar for white and
black man vignettes. Results for interview participants were
also quantitatively similar for the white and black man
vignettes (Table S4). Variables selected via LASSO for heart
transplant that had a positive effect on allocation included the
following (in order of greatest to least magnitude): adherence,
social history, other medical and surgical history, laboratory
tests, history of present illness, and cardiac diagnostic testing
(Table 2). Need for additional testing or consultation had a
negative effect on transplant allocation. Variables selected via
LASSO for bridge to transplant VAD only had a positive effect
on allocation. In order of greatest to least magnitude, these
included the following: social history, other medical and
surgical history, laboratory tests, adherence, and cardiac
diagnostic testing. For destination therapy VAD, no factors
were selected as important by LASSO. For allocation to no
advanced therapy, the LASSO selected factors included the
following: need for additional testing or consultation as a
positive effect (supporting no advanced therapies) and the
following factors as negative effects on allocation (supporting
advanced therapy): history of present illness, adherence,
other medical or surgical history, laboratory tests, cardiac
diagnostic testing, social history, and height/weight/body
mass index. The interactions with vignette race and each
survey factor were not selected as important in the LASSO

After LASSO and multivariable regression, significant
participant demographic factors negatively influenced alloca-
tion to heart transplant, including ≥11 years of past training
(�0.49 [95% CI, �0.92 to �0.06]) and interaction of age
≥40 years by black vignette (�0.58 [95% CI, �1.15 to
�0.0002]). Overall among healthcare professionals aged

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≥40 years, the white vignette trended more favorably for
transplant over the black vignette but was not significantly
different (white vignette, 0.39 [95% CI, �0.04 to 0.83]; black

vignette, �0.18 [95% CI, �0.56 to 0.19]). Bridge to transplant
VAD was negatively influenced by ≥11 years of past training
(�0.51 [95% CI, �0.96 to �0.07]). No participant demo-
graphic factors significantly influenced the decision for
destination therapy VAD. Advising against candidacy for
advanced therapies was positively influenced by ≥11 years of
past training (0.49 [95% CI, 0.10-0.88]).

Think-Aloud Interview Results
Using grounded theory, a 3-pronged central phenomenon
guiding decision making for advanced HF therapies emerged:
Is the heart sick enough? Is the body well enough? Is there
enough social/emotional support to make it through the
process? The decision-making process was sequentially
directed by 5 themes, with 2 themes occurring simultane-
ously: (1) forming an overall impression, (2) identifying
urgency, (3a) evaluating the appropriateness of prior care,
(3b) anticipating challenges, and (4) evaluating trust and
making the ultimate recommendation (Table 3, Figure 2).
Themes were further characterized by 12 subthemes describ-
ing racial similarities and differences affecting the decision-
making process. Exemplar quotes illustrate the descriptions
of the 5 major themes in the following section.

Forming an overall impression

Participants developed an overall impression of the patient
from the photograph. Some participants suggested the
photograph contributed to negative bias about race and
socioeconomic position for both the white and black
vignettes. Others felt that the photograph had little impact
on their decisions and found race irrelevant with the
exception of making decisions about genotyping. Several
participants found the photographs to be more detrimental
toward the white than the black vignette.

“. . .a few times a staff member has given the presentation and

decided to actually put the photo [in], and I decided that that was

not good, because you have an opinion that is now not based on

facts on paper, but whether you thought the person was lovely or

not.” (white participant/white vignette)

Identifying urgency

The second step in decision making included figuring out the
patient’s severity of illness and need for advanced HF
therapies. All participants surmised that both the white and
black vignette patients had end-stage HF on the basis of the
history of present illness. Participants believed that develop-
ing consensus for urgency was an important step in the
decision-making process. However, participants displayed
more consistent concern for higher illness acuity within the
black than the white vignette.

Table 1. Participant Demographics


White Man Black Man

P Value*


Age, y 0.76

<40 82 (40.2) 82 (37.6)

40 119 (58.3) 129 (59.2)

Unknown 3 (1.5) 7 (3.2)

Sex 0.34

Men 107 (52.5) 125 (57.3)

Women 92 (45.1) 87 (39.9)

Unknown 5 (2.5) 6 (2.8)

Ethnicity 0.83

Minority 59 (28.9) 67 (30.7)

Non-Hispanic white 137 (67.2) 145 (66.5)

Unknown 8 (3.9) 6 (2.8)

Position 0.83

Noncardiologist 59 (28.9) 65 (29.8)

Cardiologist or

142 (69.6) 146 (67.0)

Unknown 3 (1.5) 7 (3.2)

Past training, y 0.95

<11 113 (55.4) 118 (54.1)

11 89 (43.6) 90 (41.3)

Unknown 2 (1.0) 10 (4.6)

UNOS region

1 14 (6.9) 13 (6.0) 0.30†

2 21 (10.3) 21 (9.6)

3 13 (6.4) 13 (6.0)

4 16 (7.8) 12 (5.5)

5 33 (16.2) 34 (15.6)

6 3 (1.5) 7 (3.2)

7 29 (14.2) 25 (11.5)

8 16 (7.8) 12 (5.5)

9 14 (6.9) 13 (6.0)

10 25 (12.3) 22 (10.1)

11 17 (8.3) 39 (17.9)

Unknown 3 (1.5) 7 (3.2)

Data are given as number (percentage). Interviewed participants meeting exclusion
criteria for survey analysis because of missing values for therapy allocation are not
included in this table (white man vignette n=2, black man vignette n=3). UNOS indicates
United Network for Organ Sharing.
*The v2 test for P value excludes unknowns because small values of unknown provide
inaccurate approximation.
†The UNOS region P value approximation may be inaccurate.

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Table 2. Factors Influencing Decision Making for Advanced Therapies From Stage 1 LASSO and Stage 2 Multivariable Regression

Stage 1 LASSO Regression Model


Heart Transplant BTT VAD DT VAD Not Candidate

HPI 0.032 ��� ��� �0.074
Age ��� ��� ��� ���
Race or ethnicity ��� ��� ��� ���
Sex ��� ��� ��� ���
Height/weight/BMI ��� ��� ��� �0.0003
Insurance ��� ��� ��� ���
Blood type and PRA class ��� ��� ��� ���
Cardiac history ��� ��� ��� ���
NYHA functional class and vital signs ��� ��� ��� ���
Medications ��� ��� ��� ���
Other medical history and surgical history 0.058 0.080 ��� �0.047
Social history 0.085 0.137 ��� �0.016
Adherence 0.123 0.020 ��� �0.055
Cardiac diagnostic testing 0.027 0.009 ��� �0.031
Pulmonary studies ��� ��� ��� ���
Laboratory tests 0.054 0.040 ��� �0.043
Infectious disease ��� ��� ��� ���
Cancer screening ��� ��� ��� ���
Additional testing/consultation needed �0.003 ��� ��� 0.003
Black vignette ��� ��� ��� ���
Stage 2 Demographic
Factors’ Multivariable
Regression Model

Estimate (95% CI) P Value

Estimate (95% CI) P Value

Estimate (95% CI) P Value

Estimate (95% CI) P Value

White non-Hispanic �0.13 (�0.47 to 0.21) 0.44 0.18 (�0.18 to 0.55) 0.32 0.49 (�0.02 to 1.00) 0.06 �0.22 (�0.53 to 0.10) 0.18
Women 0.09 (�0.29 to 0.46) 0.65 0.19 (�0.20 to 0.58) 0.34 0.27 (�0.27 to 0.82) 0.33 0.06 (�0.29 to 0.40) 0.75
Aged ≥40 y 0.39 (�0.04 to 0.83) 0.08 0.25 (�0.20 to 0.71) 0.27 0.03 (�0.62 to 0.68) 0.93 �0.17 (�0.57 to 0.23) 0.40
≥11 y Past training �0.49 (�0.92 to �0.06)* 0.02 �0.51 (�0.96 to �0.07)* 0.03 0.12 (�0.52 to 0.77) 0.71 0.49 (0.10 to 0.88)* 0.01
Cardiologist 0.04 (�0.37 to 0.46) 0.84 0.12 (�0.31 to 0.55) 0.58 0.01 (�0.59 to 0.61) 0.98 �0.16 (�0.54 to 0.22) 0.41
Black vignette 0.20 (�0.53 to 0.93) 0.58 0.15 (�0.61 to 0.92) 0.69 0.76 (�0.33 to 1.86) 0.17 �0.05 (�0.74 to 0.64) 0.89
White non-Hispanic
and black vignette

�0.04 (�0.51 to 0.42) 0.86 �0.35 (�0.84 to 0.15) 0.17 �0.46 (�1.17 to 0.26) 0.21 0.42 (�0.03 to 0.86) 0.06

Women and black
vignette interaction

0.00 (�0.50 to 0.50) 0.99 0.10 (�0.42 to 0.62) 0.71 �0.19 (�0.94 to 0.55) 0.61 �0.24 (�0.71 to 0.23) 0.32

Aged ≥40 y and
black vignette

�0.58 (�1.15 to �0.0002)* 0.0499 �0.25 (�0.85 to 0.36) 0.42 0.28 (�0.59 to 1.15) 0.53 �0.06 (�0.62 to 0.49) 0.83

≥11 y Past training
and black vignette

0.52 (�0.05 to 1.09) 0.08 0.50 (�0.10 to 1.10) 0.10 �0.35 (�1.21 to 0.51) 0.42 �0.19 (�0.74 to 0.36) 0.49

Cardiologist and
black vignette

�0.14 (�0.69 to 0.41) 0.61 �0.11 (�0.69 to 0.46) 0.70 �0.27 (�1.10 to 0.55) 0.52 �0.09 (�0.61 to 0.44) 0.74

Positive values denote support for decision, and negative values denote disapproval for decision; ellipses indicate 0 coefficient and no influence on decision making. Each factor was also
included as an interaction with black vignette. These interactions were zero coefficients in stage 1 of LASSO regression and do not include participant demographics. Stage 2 multivariable
model included factors with nonzero coefficient from LASSO model to determine influence of participant demographics. BMI indicates body mass index; BTT, bridge to transplant; DT,
destination therapy; HPI, history of present illness; LASSO, least absolute shrinkage and selection operator; NYHA, New York Heart Association; PRA, panel reactive antibody; VAD,
ventricular assist device.
*Multivariable regression P value factors with significance <0.05.

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Table 3. Themes and Subthemes With Illustrative Quotations

Central Phenomenon: Is the Heart Sick Enough? Is the Body Well Enough? Is There Enough Social/Emotional Support to Make It Through the Process?


Illustrative Quotations (Participant Race)Subthemes Vignette Type

Forming an overall impression

Black “. . .he looks clean and well groomed. You can tell that his beard has been combed. He is of
darker skin so non-Caucasian; I think it’s actually difficult to tell what ethnicity this patient is
based on the picture anyhow. . . That’s about all I notice about the gentleman.” (white)

“Because they look well-kept, it gives me a sense that they may be compliant with medical
therapy. Since they take the time to trim their beard, they probably are detail-oriented. That’s
my initial impression” (minority)

White “It looks like a middle-aged man. He is not smiling, and he’s bald. . . He’s got a goatee, well-
trimmed. Hard to tell what his teeth look like. . .for me, a big part of the physical exam is always
the oral exam. . ..I would not lean one way or another just based on how he looks.” (minority)

“He doesn’t look that sick when I look at him. He’s not heavy and I don’t see any JVD standing up so
he’s got good fill-out of his face and temple area and stuff. Looks young. Lots of options, just
looking at him” (white)

Avoiding explicitly discussing race,
except for physiologic issues

Black “African-American, I would probably send genetic testing for amyloid” (minority)
“One of the few things that his race would affect would be I guess interpreting PSA, so, it’s good
that his PSA is negative. . .” (white)

White “I’m looking at a white Caucasian male which I know affects survival and risk. . .” (white)
“His picture matches his age and the other description, right non-Hispanic. So that’s about it.
Doesn’t look malnourished, doesn’t look cachectic. . . It’s just a head shot. This photo’s
neutral.” (white)

Believing photographs may contribute to
negative racial bias

Black “. . .we don’t usually say what the ethnicity of the person is. . . Yeah, we don’t have a picture of
the person usually either. . .” (white)

White “I am certain that there is a bias, especially when it comes to ethnic minorities and women in
general. . .” (minority)

“. . .I just think it’s interesting, because I do think people are swayed by that [knowing race]. . .
And I just think that’s wrong. I should not know the sex, anything else.” (white)

Developing some negative reactions to
the white but not black man

Black “Looks like a typical gentleman that you would see, stated age; doesn’t look terribly ill.” (minority)
“. . .well-kept,goodhygiene,neatlytrimmedbeard.That’sall Iwouldsaybasedonthephoto.” (minority)

White “. . .if I look at the face, that scares the heck out of me. I’ll be honest with you, it sways me. . . I
think he looks scary. Honestly, first judgement when you see him, he looks like a prisoner. . .it
looks like a mugshot photo of somebody.” (white)

“My first reaction was cover the face, because I don’t want that information. . . Because I think
that you have a bias right there. . . I think most people wouldn’t like him. He doesn’t look very
friendly to start with.” (white)

Identifying urgency

Black “So, all of these things are signs to me that things are not going well with his illness and that he
could be or is in the end stages of HF.” (white)

White “There’s no question about the need of more advanced care.” (white)
“And then the high number of hospitalizations. . . No matter what we decide at this committee
meeting, we know that this guy is probably not going to be alive for much longer.” (white)

Developing consensus for urgency of
advanced therapies

Black “. . .things are really starting to mount that he’s got advanced disease.” (white)

White “He needs advanced therapies. . .I will say, I will just list him for transplant. . .he’s very
advanced.” (white)

“The other things jump out in terms of urgency. So the fact that he’s had four hospitalizations in
the past 6 months, his mortality rate is very high. . . so it’s not as if we have a long time to
kind of consider his candidacy.” (minority)

Believing the black man was sicker than
the white man

Black “Multiple hospitalizations in the past 6 months is a terrible prognostic indicator, moreover, it
would insinuate that he has a terrible quality of life. . . His dizziness and lightheadedness with
walking minimal distance suggests that he is a terribly ill man, and he also [has] ventricular
arrhythmia, so he has a very high-risk profile for dying.” (white)


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Table 3. Continued

Central Phenomenon: Is the Heart Sick Enough? Is the Body Well Enough? Is There Enough Social/Emotional Support to Make It Through the Process?


Illustrative Quotations (Participant Race)Subthemes Vignette Type

“I don’t have too many patients in my clinic like this that are not being actively considered for
advanced therapies, or. . .being referred to hospice or at least a palliative care visit. It’s time to
be thinking about those things, yeah.” (white)

“I think he’s too sick. . .he has a sick heart, but otherwise, he’s favorable for transplant listing or
VAD I would say, really. . .he’s going to die unless something is done soon. . .” (white)

“You know given how sick he is and that we need to make a decision quickly on this gentleman.
My thought given his blood type is that he’s somebody we’re gonna need to move really
quickly to an LVAD as a bridge hopefully to transplantation.” (white)

White “My sense is he’s not terribly frail. . .” (white)
“He doesn’t seem like he’s critically ill, based on his PMH didn’t tell me that. . .” (white)

Evaluating the appropriateness of prior care

Black “Certainly, if he’s not on good therapy, maybe he would be better if he was on better
therapy. . .” (white)

White “Adherence, lost to follow-up for a few years when he didn’t have health insurance, we see that
all the time. I think it’s a horrible statement in our country, but we haven’t fixed that.” (white)

“I just want to make sure that someone has tried to get him [on] a good medical therapy and
that he is taking what he’s been able to. . .” (white)

Questioning late presentation and
appropriate guideline-directed medical

Black “I’d also question whether or not he is adequately treated from a medical standpoint, and
whether or not he has been discharged prematurely, and whether or not he is on optimal
medical therapy in the hopes of precluding another hospitalization.” (white)

White “Does he have, has he been, is he on adequate therapy? Is there anything that could be done,
that can be done to improve his trajectory?” (white)

“This is our typical kind of patient. . .We usually get them too late and it doesn’t matter. I mean,
we still do exactly what we need to do but it’s just. . . the systems are not sophisticated
enough to capture these patients. For example, this guy was in the hospital 4 times in the last
6 months. Could we have gotten him, in an ideal world, after his second one and with his
kidneys and liver in better shape?” (white)

Finding more concerns for appropriate
treatment of black than white man

Black “Has he not been triaged and treated properly?” (minority)
“. . .he seems to have a pretty malignant course in that he was just diagnosed a year ago
and. . .doesn’t seem to have responded to medical management unfortunately. Lots of
hospitalizations which is a poor prognostic indicator.” (white)

“It sounds like he’s a gentleman despite having significant heart failure. . . probably has not
been exposed to heart failure specialists previously.” (white)

White “I think it was a pretty thorough workup and presentation. . .” (white)
“Typical stuff. It looks like he’s had a reasonable workup.” (white)

Anticipating challenges

Black “So, his size and blood type would infer that if he is indeed a candidate for heart transplant, his
time on the wait list would be considerable.” (white)

“The social history is concerning for whether or not he has adequate social and financial
resources to tolerate a VAD or a transplant. . .” (white)

White “I think the fact that we can’t put him on medications is a major issue. When we consider
advanced therapies, certainly, taking a pill is a lot easier than going through major cardiac
surgery. We try to max out medications first. . .” (white)

“. . . social support and kind of having backup plans as what to do that like any other thing with
heart failure patients is a constant struggle but it can be overcome if you make them think that
way. Prepare, have a backup plan. You know, work on it. Talk to people. Have a wider net of
support, not just your wife, not just your brother.” (minority)

Developing similar concerns for social
determinant of health, including
caregiver burnout for both races

Black “So if you have a patient, let’s say, that may not have the [social] support for transplant then
maybe VAD may be an option because there’s less visits. . .. that’s something I would consider
in this patient too, if we find that the support is not adequate for transplant.” (minority)

“I think healthcare literacy is a major issue. I don’t think this is a malignantly noncompliant


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Table 3. Continued

Central Phenomenon: Is the Heart Sick Enough? Is the Body Well Enough? Is There Enough Social/Emotional Support to Make It Through the Process?


Illustrative Quotations (Participant Race)Subthemes Vignette Type

patient. He lets life overwhelm him as a subjective judgment. So I would say this is something
we can help modify. It’s not a deal breaker.” (minority)

White “. . .I don’t want your wife to burn out. She’s maintaining 2 children, household, and taking care of
you so she needs help. And if he says I can’t find anybody I say I cannot move forward with
transplant or VAD if you can’t come up with a second person. Because it’s not fair to his wife.”

“But he’s kind of drawing the short straw when it comes to the social determinants of health. He
sounds resource poor, lost his job, doesn’t even have disability yet.” (white)

Developing greater concerns for
adherence/trust for black than
white man

Black “Adherence. . . Lost to follow-up for a couple of years when he didn’t have healthcare
insurance. . . Something’s not fitting here. Is he lying to us? Was he not working for the Postal
Service? The social worker will need to sort that out. . .” (minority)

“He’s seeking disability. I don’t like the word seeking. . . It’s been 6 months. What kind of
financial support is he going to have?” (minority)

“It makes me wonder what his outpatient situation has been like and what also his compliance
issue has been with his outpatient care. . .” (minority)

White “The fact that he’s had, is married or would have had a significant other that’s working lends
credibility to their ability to take care of the needs that come along with really advanced
therapy. . .” (white)

“I’d say the adherence part doesn’t push me away from advanced therapies. It may push me
towards LVAD first and say if you miss an appointment or maybe it’s not quite as a big a deal. .
gives me some time to get to know him first before he’s in a stage where he needs to take
immunosuppression and have it tightly regulated and get labs and be compliant.” (white)

Evaluating trust and making the ultimate recommendation

Black “I don’t have reason not to. . . It sounds like he was a guy who worked all his life. . . I don’t trust
anyone really but I trust that he wants to live, and if that’s the case then I’ll give him a shot. . .”

“I don’t have a longitudinal history with him. . . I don’t like to use the word trust. I would use the
word has this person shown sufficient compliance and understanding of liability. . .” (minority)

“He seems pretty clean and straightforward based on what I’m presented. I mean it’s one thing,
again, you know meeting somebody and reading about somebody are 2 totally different
things.” (minority)

White “It goes back to the whole photo. So, if I didn’t have the photo and I’m looking at the facts, we
would [trust him]. The answer is, this patient has tried.” (white)

“Neither one’s on the table until I get to know him better, you know. . .” (white)

Believing the heart is a finite gift and
should not be wasted

Black “If thereisn’t [adequatesocialsupport]andthere’sstillagrayareathenIwouldbepushedalittlemore
towards VAD than transplant. . .there’s a limited number of organs available whereas VADS, there’s
no limitation on that. So, we describe it as a precious resource, the heart. . .” (white)

“Wereallydoneedtoshowconsistencyoffollow-upjustgivenourobligationswith transplant, thatwe
were good stewards of the organs. . .” (white)

“I know I keep saying social compliance and I think it’s more for respect for an organ honestly. . .”

White “And if you take a 20-year-old heart and put it in somebody who’s only going to get 5 years out
of it, you haven’t really served the donor appropriately. And that might be something that
pushes me more towards going towards a VAD. . .. I don’t want to take a heart and give it to
somebody who’s going to mess it up in 5 years.” (white)

“. . .these therapies are not only very expensive, but are limited, and so, in the world of ethics,
and trying to maximize utility for everybody, you really don’t want to use resources on
somebody who is not going to benefit fully from them because of things like nonadherence and
variable compliance.” (minority)

“At the same time we need to pick candidates who are capable of taking care of the vital
resource that they were provided, be it a VAD and/or a transplant, obviously transplant more.
And it’s my job ethically to make sure he’s able to do that. If some poor mother’s going to


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“. . .I think he is going to need to have a workup and relatively

expeditious action. I don’t think this is the kind of patient you can

sit on for a long time and hope that they’re going to do well. So I

would say that I would not be dragging my feet. . .” (white

participant/black vignette)

Evaluating the appropriateness of care

In the third step, participants questioned whether the patients
had received appropriate care before referral. Participants

wondered whether guideline-directed medical therapy had
been provided correctly and why patients were presenting so
late for evaluation for advanced HF therapies.

“. . . If he was my own patient, I would probably try myself to see if

indeed he is intolerant. I would have to do a very thorough review

of his chart to see if he has been given the old college try to

confirm absolute intolerance.” (white participant/black vignette)

Participants found more concerns about appropriate prior treat-

ment for the black than the white vignette.

Table 3. Continued

Central Phenomenon: Is the Heart Sick Enough? Is the Body Well Enough? Is There Enough Social/Emotional Support to Make It Through the Process?


Illustrative Quotations (Participant Race)Subthemes Vignette Type

donate a 17-year-old’s heart, I need to know that this person’s capable of taking care of it.”

Desiring a road test for white man with
inotropes to help him get a transplant

White “. . .we will ask him to come to clinic every week, show compliance to his medication regimen,
show that he can come to clinic appointments, bring his social support people with him. . .”

“I still think he’s a candidate [for transplant]. Maybe he would benefit from some IV inotropes in
the meantime. . .” (white)

“If he has an adequate caregiver plan and can get his diabetes under good control would place
on inotropes/IABP and list for transplant.” (white)

“I’m thinking he should be put on inotropes and we should get to know him. . .” (white)
“I would like to have some bridge to show me that he’s compliant. . . Start with an inotrope. . .
See if they can handle it.” (minority)

Offering the black man a VAD Black “It’s not clear what the equipoise is here for this but I think most people would VAD him too, at
this point.” (white)

“I would lean a little bit more towards an LVAD just given the issues with the noncompliance. . .”

“. . .[if he won’t take a hep c heart] he’s probably a candidate for LVAD cuz he’s pretty sick. . .”

“I would say that I don’t know right or wrong, I think sometimes in cases where we don’t have
the ability to wait, we typically give the patients the benefit of the doubt for an LVAD, probably
not for transplant.” (white)

“But I think in this case you could go either way. And then really it’s up to him or his financial
plus family support that if he can go straight to transplant because obviously the patient and
the family has to be very, very compliant with therapy. So they have to come to the clinic visit
and then also take medications and stuff like that. If there is any concern from that
perspective, then LVAD might be a better option.” (minority)

“. . .this guy absolutely merits inotropic support. And the question is, is the inotropic support
going to be a bridge to compliance? Is the inotropic support going to be a bridge to
optimization for LVAD? Or is the inotropic support going to be a bridge to transplant listing? We
don’t know that yet.” (minority)

“. . .I would lean a little bit more towards an LVAD just given the issues with the
noncompliance. . .cuz we can work with [the A1C] and obesity. . . Those are from what I know
now, fixable problems. . .but I think the noncompliance, that is definitely a hindrance to ideal
care.” (minority)

“I think we would definitely consider this man for an LVAD at our center pretty soon. I think
transplant is a little bit harder to be very enthusiastic about. . .” (minority)

White “I would push him to be a transplant candidate instead of a VAD candidate. . . He would
potentially be a great candidate for transplant” (white)

“At this stage, if all those statements that I made are presumed, that there’s nothing else
missing, that he doesn’t have sarcoidosis, he doesn’t have active inflammation in his heart, I
would probably recommend that he goes through a transplant.” (minority)

HF indicates heart failure; IV, intravenous; IABP, intra-aortic balloon pump; JVD, jugular venous distention; LVAD, left VAD; PSA, prostate specific antigen; PMH, past medical history; VADs,
ventricular assist devices.

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Throughout the decision-making process, participants
believed that the selection team dynamics impacted deci-
sions. Hierarchy in selection team seating, role, and opinion
were described during actual advanced HF therapy selection

“But at an actual selection meeting, it’s such an interesting

sociologic study because you always have the people with the

most power and seniority. . .at the front of the room. They’re the

ones who make the decisions. Then the underlings sit in the back

of the room. . .then somebody who knows the patient might

chime in. . .with their usual strong opinion that may or may not be

completely rational in a given clinical situation.” (white partic-

ipant/white vignette)

Anticipating Challenges
In this simultaneous third step, participants also began
anticipating barriers to advanced HF therapies. Participants
were concerned about social determinants of health and the
risk of caregiver burnout for both the white and black
vignettes. Participants developed greater concerns for adher-
ence with the black vignette.

“I know we sometimes use the VAD. . .like a test to see if they

would do well with a heart transplant and because of his non-

compliant appearing issues in the past, that would be why I would

lean towards a VAD to foresee if he can be compliant before

giving him an organ. . .it’s more of a test to see if. . .a patient can

respect the organ that’s given to them.” (minority participant/

black vignette)

“Adherence, lost to follow-up for a couple of years when he didn’t

have health insurance. That is a red flag for both therapies. You

know, these are high resource-intense therapies that you really do

need to maintain. . . We really do need to show consistency of

follow-up just given our obligation with transplant, that we were

good stewards of the organs.” (white participant/black vignette)

“This guy was taking care of himself, just his disease outstripped

his ability to manage it. . .” (white participant/white vignette)

Evaluating Trust and Making the Ultimate
The last step in the decision-making process included
evaluating whether the healthcare selection team trusted
the patient with advanced HF therapy, which contributed to
the final recommendation. Participants believed that the heart
is a finite gift and should not be wasted. This contributed to
hesitancy with offering a transplant in both the black and
white vignettes. However, the final recommendation differed

Figure 2. Decision-making process for allocating advanced heart failure therapies. Themes from Grounded Theory of Think-Aloud
Interviews. GDMT indicates guideline-directed medical therapy; LVAD, left ventricular assist device.

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by race. The white vignette was more often offered a “road
test” with inotropes to see if he could appropriately manage
his care and be listed for heart transplant later. The black
vignette was offered a VAD because he was thought to be too
ill to wait for transplant.

“I would say that I don’t know right or wrong, I think sometimes in

cases where we don’t have the ability to wait, we typically give

the patients the benefit of the doubt for an LVAD [left VAD],

probably not for transplant.” (white participant/black vignette)

In this first study to robustly address how patient race
influences decision making for advanced HF therapies, we
found that black race compared with white race modestly
influenced allocation to heart transplant, particularly during
interviews. Survey ratings for advanced HF therapies were
similar for black and white patient vignettes, but analysis
revealed that black vignette and healthcare professional aged
≥40 years were subtly associated with opposing heart
transplant. Surveys revealed that subjectively assessed
factors, including social history and adherence patterns, were
significant factors in the decision-making process. Both
factors were described during interviews as negatively
influencing allocation of heart transplant, particularly among

Interviews revealed a stepwise decision-making process
that was influenced by race. Race influenced each of these
steps: avoiding discussing race explicitly, believing pho-
tographs may contribute to racial bias, believing the black
man was more ill and possibly undertreated compared with
the white man, developing greater concern for trust and
adherence with the black man, and ultimately offering the
white man a transplant and the black man a VAD.

Clinical uncertainty can contribute to racial bias in clinical
decision making.10,26 The indications and absolute contraindi-
cations for advanced HF therapies are definitive in the
guidelines; however, relative contraindications, which are
increasing among advanced therapy candidates,27 are open to
provider interpretation.9,28 As observed in this study, health-
care professionals had benevolent goals for the patients in the
vignettes but were subtly influenced by patient race.

An extensive literature base has demonstrated that
unconscious bias contributes to racial inequalities in medical
care.7,29–31 Often, racial and ethnic minority patients are
perceived negatively by healthcare professionals.7,29–31 Bias
increases further against minority patients compared with
white patients when the patient has a lower socioeconomic
position.29 As was illustrated in our study, the black man was
viewed as less adherent to therapy than the white man,
despite having the same clinical and social history. Over 2
decades ago, similar findings were found among physicians

considering cardiovascular catheterizations for black and
white patients.14 Although bias was subtly observed in our
study, its presence can profoundly affect medical care.32

The stability of advanced therapy programs is based on
having good patient outcomes and reasonable patient
volumes. Programs may deny candidacy to patients perceived
as high risk for poor outcomes because they may threaten the
longevity of the advanced therapy program.33 Blacks have
higher mortality after heart transplant than whites34 and are
known to not receive equitable access to care.4 This could
contribute to decisions to offer a heart transplant to the white
patient over the black patient. However, programs have
demonstrated similar long-term outcomes after heart trans-
plant for blacks and whites through comprehensive multidis-
ciplinary care.35

Reducing racial inequities in decision making for heart
transplant may require several approaches. The first step
could include reducing clinical uncertainty by making subjec-
tive assessments objective. Subjective assessments of
adherence and social support could be replaced with known
objective measurements, such as the Morisky Medication
Adherence Scale36 and the Stanford Integrated Psychosocial
Assessment for Transplantation.37 The second step includes
awareness that conscious and unconscious bias can con-
tribute to interpretation of assessments.7 Known methods to
promote egalitarian treatment of patients and healthcare
team members include bias training.38 Healthcare profession-
als can learn how to recognize biases and work to establish
connections that supersede bias.7,38 Last, patient presenta-
tions can be changed so that potentially biasing information is
not presented. As described by participants in this study,
programs can eliminate photographs and ethnicity identifiers
from presentations. This last step would not remove bias from
those that have a working relationship with the patient but
may prevent other team members involved in decision-making
processes from potentially making a biased decision.

The response rate for surveys was 29%. Although this may
limit generalization, participants from all US United Network
for Organ Sharing regions were represented, with the
exception of region 6, in the interviews. Because the
membership directory did not distinguish members who
routinely allocate advanced HF therapies, the number of
eligible respondents is lower than the total number sent the
survey. Thus, our actual response rate is unknown, but >29%.
Over 10% of participants were interviewed and saturation was
achieved, signifying an appropriate sample size. Interviewers
were not blinded to study objectives and could have
emphasized topics unintentionally during interviews. However,
steps were taken to avoid biased interviewing, including a 3-

DOI: 10.1161/JAHA.119.013592 Journal of the American Heart Association 12

Heart Failure Decision Making and Race Breathett et al



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ebruary 8, 2020

hour training on think-aloud protocol and multiple observed
practice interviews.

When provided a patient case vignette, HF professionals
followed a stepwise process in clinical decision making for
advanced HF therapies that addressed medical appropriate-
ness, comorbidities, and strength of social and emotional
support systems. Race modestly influenced the decision-
making process. Healthcare providers subtly recommended
heart transplant in white patients over black patients, despite
identical medical and social history. Racial bias was demon-
strated particularly during interviews, which more closely
resemble allocation meetings, than in numerical surveys.
Because allocation for advanced HF therapies occurs via
conversations in group settings rather than through surveys,
the influence of race on decision making may be significant
and should be addressed.

We acknowledge Sarver Heart Center administrative support from
Gilbert Maldonado, Mari Vayre, and Taylor Valenzuela.

Sources of Funding
Dr Breathett received support from the National Heart, Lung,
and Blood Institute K01HL142848, University of Arizona
Health Sciences, Strategic Priorities Faculty Initiative Grant,
and University of Arizona, Sarver Heart Center, Women of
Color Heart Health Education Committee. L. Luy received
support from National Institutes of Health R25HL108837.


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