The Association of Provider Communication with Trust
among Adults with Sickle Cell Disease
Carlton Haywood Jr, PhD, MA1, Sophie Lanzkron, MD2, Neda Ratanawongsa, MD, MPH3,
Shawn M. Bediako, PhD4, Lakshmi Lattimer, MD5, Neil R. Powe, MD, MPH, MBA3,
and Mary Catherine Beach, MD, MPH6
1Division of Hematology, The Johns Hopkins University School of Medicine, The Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA;
2Division of Hematology, The Johns Hopkins University School of Medicine, Baltimore, MD, USA;3University of California, San Francisco, San
Francisco General Hospital, San Francisco, CA, USA;4Department of Psychology, University of Maryland, Baltimore County, Baltimore, MD,
USA;5The Johns Hopkins University School of Medicine, Baltimore, MD, USA;6The Johns Hopkins Berman Institute of Bioethics, The Johns Hopkins
University School of Medicine, Baltimore, MD, USA.
BACKGROUND: Adults with sickle cell disease often
report poor interpersonal healthcare experiences, in-
cluding poor communication with providers. However,
the effect of these experiences on patient trust is
OBJECTIVE: To determine the association between
patient ratings of the previous quality of provider
communication and current trust in the medical pro-
fession among adults with sickle cell disease.
RESEARCH DESIGN: Cross-sectional survey.
PARTICIPANTS: A total of 95 adults with sickle cell
MEASUREMENTS: The four-item Provider Communi-
cation Subscale from the Consumer Assessment of
Healthcare Plans and Systems Survey; The five-item
Wake Forest Trust in the Medical Profession Scale.
MAIN RESULTS: Better ratings of previous provider
communication were significantly associated with higher
levels of trust toward the medical profession. A 10%
increase in provider communication rating was associat-
[1.76%, 5.76%]), adjusting for patient-level demographic,
clinical, and attitudinal characteristics.
CONCLUSIONS: Poorer patient ratings of provider
communication are associated with lower trust toward
the medical profession among adults with sickle cell
disease. Future research should examine the impact of
low trust in the medical profession on clinical outcomes
in this population of patients.
KEY WORDS: sickle cell disease; trust; quality of healthcare.
J Gen Intern Med 25(6):543–8
© Society of General Internal Medicine
BACKGROUND AND OBJECTIVES
Sickle cell disease is a genetic condition which affects approx-
imately 100,000 persons in the U.S., mostly African Ameri-
can1. Persons with sickle cell disease can experience
significant morbidity throughout life, as well as early mortal-
ity2. The hallmark symptom of sickle cell disease is the vaso-
occlusive crisis, which is an episodic event of severe pain which
often requires hospitalization, typically to internal medicine
services, and treatment with opioids.
Adults with sickle cell disease consistently report negative
interpersonal healthcare experiences3–7. The interpersonal
healthcare experiences of adults with sickle cell disease have
been characterized as encompassing mistrust from clinicians,
stigmatization, lack of control, and neglect8. That is, sickle cell
patients report that the legitimacy of their pain is often doubted
by healthcare professionals, that they are stigmatized as drug-
seeking, that they are not typically included as partners in the
medical relationship, and that their needs are often neglected
Despite the body of literature documenting the negative
interpersonal healthcare experiences of adults with sickle cell
disease, no studies have examined the trust that persons with
sickle cell disease have toward the medical profession (as
opposed to the trust that clinicians may have, or fail to have,
in sickle cell patients as noted above). Trust is a central feature
of the patient–physician relationship, and patient trust in
physicians and the medical profession has consistently been
found to be associated with the quality of the patient–
physician relationship, satisfaction with care, continuity of
care, willingness to seek care, willingness to follow physician’s
recommendations, adherence to therapy, and self-reported health
status9–13. Trust in the medical profession may be particularly
important for patients with sickle cell disease, who have been
shown to underutilize recommended medical therapies14.
The aim of this study was to assess the level of trust
toward the medical profession among adults with sickle
cell disease, and to test the hypothesis that lower trust
would be associated with poorer patient ratings of the
quality of their previous communication from providers,
which is one specific aspect of prior interpersonal health-
Received May 5, 2009
Revised November 4, 2009
Accepted December 30, 2009
Published online March 3, 2010
RESEARCH DESIGN AND METHODS
Study Design, Setting and Sample
We conducted a cross-sectional study of adults (age 18+) with
sickle cell disease receiving care at an urban academic medical
center from September 2006 to June 2007.
Eligible patients were recruited from the adult sickle cell and
hematology outpatient clinics, the emergency department
(ED), the inpatient units, or within 5 days after discharge from
the hospital. Participating patients underwent a 15-minute
interview by a trained study team member and received $10 for
interview completion. Health status information was abstract-
ed from the patient’s medical record. The academic medical
center’s institutional review board reviewed and approved the
study procedures, and all participating patients gave informed
Patient trust toward the medical profession, the dependent
variable, was assessed using the Wake Forest Trust in the
Medical Profession scale12, which operationalizes trust as the
optimistic acceptance of a vulnerable situation in which one
party believes that its interests will be cared for by another
party15. Respondents expressed their level of agreement with
the following statements: 1) Sometimes doctors care more
about what is convenient for them than about their patient's
medical needs (reverse coded); 2) Doctors are extremely
thorough and careful; 3) You completely trust doctors' deci-
sions about which treatments are best; 4) A doctor would never
mislead you about anything; and 5) All in all, you trust doctors
completely. Higher levels of trust on this measure are associ-
ated with greater trust in a specific physician, greater satis-
faction with care, and following a doctor’s recommendation,
while lower levels of trust are associated with having had a
prior dispute with a physician, having sought a second
opinion, or having changed physicians12. Scores on each of
the items were summed, and then transformed onto a 0 to 100
scale. Higher scores indicated greater trust. This measure
demonstrated good internal consistency in our sample with a
Cronbach’s alpha of 0.80.
Patient ratings of provider communication, the independent
variable, were measured using the Provider Communication
subscale of the Consumer Assessment for Healthcare Plans
and Systems survey16. Respondents were asked to rate the
extent to which their healthcare providers in the prior year
listened carefully, explained things clearly, showed respect for
what the respondent had to say, and spent enough time with
the respondent. By convention, scores on each of the provider
communication items were summed, and then transformed
onto a 0 to 100 scale. Higher scores indicate better ratings of
provider communication17–19. This measure demonstrated
excellent internal consistency in our sample with a Cronbach’s
alpha of 0.90.
We assessed a number of patient demographic, clinical, and
attitudinal characteristics as potential confounders. Patient age
was assessed as a continuous variable. Categorical demographic
variables assessed were patient sex, education (<high school,
high school/GED, some college, college or beyond), annual
household income (<$10,000; $10,000 to $35,000; and
≥$35,000+), and indicator variables for current employment
(employed/unemployed), school status (in school/not in school),
and receipt of disability (yes/no).
We assessed the following categorical clinical variables
related to the patient’s health status: the patient’s sickle cell
type (HbSS vs. other), indicator variables for non-sickle related
comorbidities (diabetes, hypertension, HIV, hepatitis B, or
hepatitis C), a categorical variable assessing the number (0,
1, 2, or 3+) of sickle-related comorbidities (acute chest
syndrome, avascular necrosis, renal disease, pulmonary hy-
pertension, or iron overload), and a categorical variable asses-
sing the patient’s self-report of their annual hospital utilization
for treatment of vaso-occlusive crises (<1, 1–3, 3–10, 10+).
Two continuous patient attitudinal variables were measured.
Revised, which appraises the extent to which individuals have
positive expectations for the future20. Locus of Control was
assessed using the Multidimensional Health Locus of Control
subscales, whichmeasurethe extenttowhichindividuals believe
their health is determined by their own actions (internal locus of
control), by chance (external locus of control: chance), or by
Finally, we assessed the patient interview setting (inpatient
vs. outpatient) as a categorical covariate of interest to determine
if differences in trust were associated with the interview site.
Bivariate associations among the variables were examined
using Pearson correlations, chi-square tests, t-tests, and one-
way analysis of variance as appropriate. Patient characteristics
associated with provider communication ratings or trust at a
p-value≤0.20 in bivariate analyses were retained for inclusion
in subsequent regression models.
The independent association of provider communication rat-
models. In model 1, we assessed the unadjusted association
between provider communication and trust. To this model, we
sequentially added the patient demographic variables (model 2),
clinical variables (model 3), and the attitudinal variables (model
4). Regression models were restricted to the subset of patients
with complete data on all variables of interest (n=82). Results for
the regression of trust on provider communication ratings are
presented both in terms ofpercentage change(in the text), and as
beta coefficients (text and tables). We used two-sided p-values for
all analyses, with a p-value≤0.05 as the threshold for statistical
significance in the regression analyses. All statistical tests were
performed using Stata 9.2 software22.
Ninety-five adult sickle cell disease patients were enrolled in the
study out of the 96 that were approached. The characteristics of
Haywood et al.: Trust and Sickle Cell Disease
the study sample are described in Table 1. Trust scores were
normally distributed with a mean (SD) of 53 (21.4). Provider
communicationratingswere left skewedwitha mean(SD)of68.6
Unadjusted associations among trust, provider communi-
cation ratings, and patient characteristics are shown in
Tables 2 and 3. Better ratings of provider communication were
associated with higher levels of trust toward the medical
profession (Pearson’s r=0.51, p<0.001). Higher trust was
associated with lower education, lower household income, not
being in school, less frequent hospital utilization, higher
internal locus of control, and higher external (powerful others)
locus of control. Better ratings of provider communication
were associated with older patient age, lower household
income, and less frequent hospital utilization. Reported levels
of trust were not found to be significantly different between
those patients interviewed as inpatients and those interviewed
as outpatients (51.8 vs. 54.2, p=0.59).
The results of regression models examining the association of
provider communication ratings with trust with and without
adjustment for potentially confounding patient characteristics
are located in Table 4. Model 1 displays a significant unadjusted
positive association between provider communication ratings
and trust (β=0.42, p<0.001). That is, patient trust increased by
0.42 points on average with each 1 point increase in provider
communicationrating. Interms ofpercentagechange, this result
meant that a 10% increase in provider communication ratings
was associated with a 5.36% increase in trust scores (95% CI
[3.32%, 7.39%]). While the strength of the relationship was
attenuated slightly upon adjustment for covariates, better pro-
vider communication ratings continued to be associated with
greater levels of trust after adjustment for each of the retained
covariates at each sequential step of model building. In the final
fully-adjusted model (Model 4: β=0.30, p<0.001) a 10% increase
in provider communication ratings was associated with a 3.76%
increase in trust scores (95% CI [1.76%, 5.76%]).
After adjustment for patient characteristics and provider
communication ratings, we also found independent associa-
tions between lower trust and having some college (vs. less
than high school) education (β=−18.28, p=0.007), having
college or beyond (vs. less than high school) education (β=
−14.5, p=0.05), being in (vs. out of) school (β=−12.46, p=0.02),
having 3–10 (vs. <1) hospital visits each year (β=−11.68, p=
0.04) and having 10+ (vs. <1) hospital visits each year (β=
−17.21, p=0.009). Higher trust was associated with greater
optimism (β=1.14, p=0.009).
Our study found that patient perceptions of the quality of their
healthcare provider’s communication in the past year are
significantly associated with current trust toward the medical
profession among adults with sickle cell disease, independent
of a number of potentially confounding patient demographic,
clinical, and attitudinal characteristics. Our study suggests
that among patients with sickle cell disease, trust is associated
with the patient’s perceptions of the interpersonal quality of
the medical interaction, independent of the individual patient’s
Table 1. Patient Characteristics (N=95)
African American, %
Less than high school
College & beyond
Annual household income, %
$10,000 to $35,000
Currently in school, %
Currently on disability, %
HbSS Disease, %
1 or more non-sickle comorbidities, %
Number of sickle comorbidities, %
Hospital utilization for painful crisis, %
<1 per yr
1–3 per yr
3-10 per yr
10+ per year
Interpersonal trust, mean(SD)
Rating of provider communication, mean(SD)
Internal locus of control, mean(SD)
External locus of control: chance, mean(SD)
External locus of control: powerful others, mean(SD)
Table 2. Pearson Correlations among Trust, Provider Communication Ratings, and Continuous Patient Characteristics
TrustP CommAge OptimismLOC: IntLOC: Ch LOC: PO
aPotential confounder retained for multivariate analyses
† p<0.20, * p<0.05, ** p<0.01, *** p<0.001
P comm–provider communication; LOC: int-locus of control: internal; LOC: Ch-locus of control: chance; LOC: PO-locus of control: powerful others
Haywood et al.: Trust and Sickle Cell Disease
own attitudes or general outlook on life. This result is
consistent with the findings of Jacobs et al. who found in their
qualitative study of a group of African Americans that techni-
cal and interpersonal competence (including perceptions of the
physician’s caring, empathy, taking the time to listen, honesty,
and keeping the patient’s best interests at heart) were the
primary factors which engendered trust in physicians23.
Furthermore, these findings are consistent with a large body
of research in other patient populations which has shown that
patient perceptions of the quality of their provider’s communi-
cation are strong determinants of the trust that patients have
As this is one of the first systematic examinations of trust
among adults with sickle cell disease, a predominately African
American patient population in the U.S., it is interesting to note
that the mean trust score for our sample (53 on a 0 to 100 scale),
is close to the mean trust score found using this same measure
among a national sample of 502 predominately white adults with
health insurance (mean trust=50 on a 0 to 100 scale)12,27. This
comparison may be compromised by the fact that members of
minority groups were not well-represented in the development
and validation samples in which the trust instrument was
initially tested. Although no systematic racial differences in the
responses to the items were found in these developmental
studies, the scale developers noted the importance of future
studies which would validate their scales specifically in minority
populations. Nevertheless, a comprehensive examination of the
conceptual and empirical literature on trust gives us greater
confidence in the construct validity of this trust scale in African
American populations. This scale was designed to assess trust in
medical professionals across five conceptual dimensions (fidelity,
competence, honesty, privacy/confidentiality, and a “global”
dimension). Qualitative studies of African American and other
minority patients which have attempted to assess the determi-
nants of physician trust among these groups have described
dimensions which greatly overlap with the dimensions assessed
by the trust measure used in our study23,24. Therefore, although
the instrument was not specifically developed for African Amer-
ican populations, it is reasonable to believe that it addresses
many aspects of trust that are salient to African Americans.
Table 3. Bivariate Associations among Patient Characteristics, Provider Communication, & Trust
Patient characteristicsProvider communication ratingsTrust in the medical profession
(mean)(sd) 95% CI (mean)(sd) 95%CI
HS Grad or GED
College or beyond
10 k to 35 k
Not currently in school
Currently in school
Not on disability
Currently on disability
Sickle cell typeb
# of non-sickle comorbidities
0 non-sickle comorbidities
1 or more non-sickle comorbidities
# of sickle comorbidities
<1 per yr
1–3 per yr
3–10 per yr
10+ per year
aAssociated with trust (p<0.20)
bAssociated with provider communication ratings (p<0.20)
Haywood et al.: Trust and Sickle Cell Disease
It is interesting to note that in our sample of sickle cell disease
patients, those with higher education and those currently in
school had lower trust than patients with lower education or
those not in school. Persons with sickle cell disease with higher
educational attainment may have different expectations for the
patient–physician relationship than persons with lower educa-
tion. As the majority of sickle cell patients who seek hospital care
are on medical assistance or other forms of public health
insurance28, medical professionals who care for this population
may assume lower educational levels among these patients.
Perhaps these assumptions change provider behavior such that
the expectations of those patients with higher education are not
met,thus causingthese individualstodeveloplowertrusttoward
the medical profession.
In our study, patients with more frequent hospital utiliza-
tion for pain also had lower trust. Hospital utilization is a
frequently used, though imperfect, measure of sickle cell
disease severity. Among the general population, patients with
lower trust have been shown to report worse self-reported
health status. It is possible that patients with worse self-
reported health perceive their interactions with healthcare
providers as having “failed”, and thus these patients may
develop lower trust in providers generally. Our finding, there-
fore, could reflect this general finding. It is also possible that
patients with more frequent hospital utilization have less trust
in primary care services, thus contributing to less frequent
outpatient utilization and less stable disease control. While
data on the association of outpatient healthcare utilization and
inpatient sickle cell utilization is surprisingly limited, Epstein
et al. recently found a marginally significant positive associa-
tion between outpatient utilization and emergency department
use among adults with sickle cell disease29, and Carroll et al.
recently found that adults with sickle cell disease categorized
as “high utilizers” of inpatient care actually have more
outpatient visits than those categorized as “low utilizers”30.
Another plausible explanation for our finding of more frequent
hospital utilization being associated with lower trust is that
medical professionals may have more negative attitudes
towards those sickle cell patients with more frequent hospital
utilization. One study which used hypothetical vignettes
describing children with sickle cell disease found that nurses
recommended lower pain medication doses for more frequently
hospitalized children compared to less frequently hospitalized
children even though the nurses did not rate the intensity of
the children’s pain any differently31. Negative attitudes toward
patients with more frequent hospital utilization could in turn
negatively affect the quality of medical professionals’ interac-
tions with these patients, thus affecting patient trust.
Finally, we found that sickle cell patient’s dispositional
optimism, which appraises the extent to which individuals
have positive expectations for the future, was independently
related to trust. This finding is consistent with the conceptual
and operational definition of trust utilized in the development
of the measure used for this study15. Despite the relationship
between optimism and trust observed in this study and
hypothesized to exist conceptually, interpersonal healthcare
experiences in the form of provider communication ratings
maintained a strong and highly significant independent asso-
ciation with trust even after controlling for the association
between optimism and trust.
Our study has several limitations. As a cross-sectional study,
causal inferences regarding the relationships between previous
provider communication and trust should be made with caution.
The association we found between provider communication
ratings and trust could be explained if persons with higher levels
of trust toward medical professionals are predisposed to provid-
ing more positive ratings of provider communication than
personswithlowerlevels oftrust. Studiesemployinglongitudinal
designs are required in order to assess the potentially complex
causal mechanism which relates patient trust to patient ratings
of provider communication.
Table 4. Multiple Linear Regression Models of Trust Toward the
Medical Profession (n=82)
Model 1 Model 2Model 3Model 4
than high school)
High school or
College or beyond
In school: Yes
for VOC (reference:
<1 per year)
1 to 3 per year1.13
3 to 10 per year
10+ per year
Locus of control:
Locus of control:
p-values in parentheses (rounded to 2 decimal points)
Haywood et al.: Trust and Sickle Cell Disease
Also, because we sampled patients seeking healthcare at a
single urban academic medical center, our results may not be
generalizable to the larger sickle cell population. Patients who
actively seek care from a medical center may have higher levels
of trust than patients who prefer to manage their conditions at
home or in other settings. Additionally, the patients in our
study may have been sicker than those patients who do not, or
only infrequently, seek care. Our study should be replicated in
a community-based sample of sickle cell patients who receive
their care in a variety of settings to determine the consistency
of our findings.
Patient trust in physicians is necessary for the ideal patient–
physicianrelationship,andis anessentialindicatorof thequality
of as a dimension of trust, it is important to be clear conceptually
as to what exactly this means. As a dimension of trust, provider
communication represents an aspect of providers which may
engender, or fail to engender, trust in patients. Our study of
adults with sickle cell disease found that patient ratings of the
quality of their provider’s communication are associated with
patient trust, even after adjustment for potentially confounding
patient characteristics. If our findings are shown to generalize to
the sickle cell patient population at large, then sickle cell patient
trust towards medical professionals might be considered for use
as an indicator of healthcare quality for this population. Inter-
ventions aimed at improving the interpersonal skills of medical
professionals who interact with sickle cell disease patients may
be an important avenue towards improving clinical and patient
perspective outcomes of care for all persons with the disease.
Acknowledgements: Dr. Haywood’s effort was supported by a
National Research Service Award Minority Predoctoral Fellowship from
National Heart, Lung, and Blood InstituteGrant #: 5F31HL082037-03.
This study was conducted with grant support from the Johns Hopkins
Blaustein Pain Research Fund. The funding agencies did not have a
role in the design, conduct, or reporting of the study.
Conflicts of Interest: None disclose.
Corresponding Author: Carlton Haywood, Jr, PhD, MA; Division of
Hematology, The Johns Hopkins University School of Medicine,
Associate Faculty, The Johns Hopkins Berman Institute of Bioethics,
624 N. Broadway, Hampton House, Room 355, Baltimore, MD
21205, USA (e-mail: email@example.com).
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