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ORIGINAL ARTICLE
A Comparative Study of Liver Disease Care in the USA
and Urban and Rural China
Ming Yang1 • Elizabeth Wu2 • Huiying Rao1 • Fanny H. Du3 • Angela Xie2 •
Shanna Cheng2 • Cassandra Rodd2 • Andy Lin4 • Lai Wei1 • Anna S. Lok2,5
Received: 28 February 2016 / Accepted: 17 May 2016 / Published online: 2 June 2016
Ó Springer Science+Business Media New York 2016
Abstract
Background Chronic liver disease is a major cause of
morbidity and mortality in the USA and China, but the
etiology of liver disease, medical practice, and patient
expectations in these two countries are different.
Aims To compare patient knowledge about their liver
disease, patient satisfaction with liver disease care, and
patient medical decision-making preference in the USA
and China.
Methods Three cohorts of established adult patients with
liver disease seen in liver clinics in Ann Arbor, USA, and
Beijing (urban) and Hebei (rural), China, completed a
survey between May and September 2014.
Results A total of 990 patients (395 USA, 398 Beijing, and
197 Hebei) were analyzed. Mean liver disease knowledge
score (maximum 5) in the USA, Beijing, and Hebei
patients was 4.1, 3.6, and 3.0, respectively (p  0.001). US
patients had a greater preference for collaborative decision-
making: 71.8 % preferred to make treatment decisions
together with the doctor, while most Chinese patients
(74.6 % Beijing and 84.8 % Hebei) preferred passive
decision-making. Mean satisfaction score (maximum 85) in
the USA was higher than in Beijing, which in turn was
higher than in Hebei (78.2 vs. 66.5 vs. 60.3, p  0.001).
There was a positive correlation between liver disease
knowledge score and satisfaction score (r = 0.27,
p  0.001) and with collaborative medical decision-mak-
ing (r = 0.22, p  0.001) when responses from all sites
were combined.
Conclusions Liver disease knowledge and patient satis-
faction were greatest in the USA, followed by Beijing and
& Anna S. Lok
aslok@med.umich.edu
Ming Yang
ymicecream@163.com
Elizabeth Wu
elizwu@med.umich.edu
Huiying Rao
raohuiying@pkuph.edu.cn
Fanny H. Du
fannydu@med.umich.edu
Angela Xie
axie@med.umich.edu
Shanna Cheng
shanna.cheng@gmail.com
Cassandra Rodd
calyrodd@umich.edu
Andy Lin
andylin@umich.edu
Lai Wei
weilai@pkuph.edu.cn
1
Hepatology Institute, Peking University People’s Hospital,
Peking University Health Science Center, 11 South Xizhimen
St, Beijing 100044, China
2
Division of Gastroenterology and Hepatology, University of
Michigan Health System, 1150 W Medical Center Drive,
4321 Med Sci I, Ann Arbor, MI 48109, USA
3
University of Michigan Medical School, 1301 Catherine
Street, Ann Arbor, MI 48109, USA
4
The Molecular and Behavioral Neuroscience Institute,
University of Michigan, 205 Zina Pitcher Pl, Ann Arbor,
MI 48109, USA
5
University of Michigan Health System, 1500 E Medical
Center Drive, 3912 Taubman Center, SPC 5362, Ann Arbor,
MI 48109, USA
123
Dig Dis Sci (2016) 61:2847–2856
DOI 10.1007/s10620-016-4206-2
then Hebei patients. Understanding these differences and
associated factors may help to improve patient outcomes.
Keywords Knowledge gaps Á Healthcare delivery Á
Hepatitis Á Cultural differences Á Medical decision-making
Introduction
Chronic liver disease is a major cause of morbidity and
mortality in both the USA and China. It is estimated that
approximately 15 % of the US population and 28 % of the
Chinese population has chronic liver disease, but the eti-
ology of liver disease, medical practice, and patient
expectations in these two countries are different [1–3].
Nonalcoholic fatty liver disease (NAFLD), hepatitis C
virus (HCV), and alcoholic liver disease (ALD) account for
the majority of liver diseases in the USA, while hepatitis B
virus (HBV), NAFLD, and ALD are the most common
liver diseases in China [2, 3].
Many studies have shown that patient satisfaction with
their care is associated with increased adherence and
improved outcomes [4–6]. Patient satisfaction is an
important metric of quality of care in Western countries
[7–9], but until recently has received little attention in
China [10, 11]. Most studies on patient satisfaction have
focused on satisfaction with cancer or pain care
[5, 12, 13], and rarely on liver disease care [14]. Patient
knowledge about their illness has been reported to cor-
relate with satisfaction with care and to influence uptake
of treatment, adherence, and outcomes [15]. Studies of
patients with HBV and HCV showed increasing patients’
knowledge increased uptake of screening and treatment as
well as compliance with treatment [15–17], but data on
knowledge gaps in other types of liver diseases are lim-
ited. Evidence suggests that a patient-centered approach
to healthcare management improves a patient’s overall
satisfaction with care and may lead to reduced associated
symptoms [18]. Shared decision-making has gained
attention in the medical field over the last decade [19]. In
many countries, such as the USA, shared decision-making
is the norm; but in some countries, such as China, med-
ical practice remains largely paternalistic and physicians
make most of the decisions.
Given the huge burden of chronic liver disease in both
the USA and China and the differences in culture and
medical practice, we conducted this study to compare US
and Chinese patients’ knowledge of their liver disease,
satisfaction with liver disease care, and medical decision-
making preferences, and to determine the factors associated
with patients’ satisfaction with liver disease care.
Materials and Methods
Subject Recruitment
Consecutive established patients with liver diseases seen in
liver clinics at a tertiary hospital in Ann Arbor, Michigan,
USA; an urban tertiary hospital in Beijing, China; and a
rural community hospital in Hebei Province, China, were
invited to participate in a survey study between May and
September 2014. The site in Hebei Province is 150 miles
away from Beijing, and most residents there are farmers
with limited education. The liver clinic in the USA is
hospital based, and providers include 10 hepatology faculty
and 4 mid-level providers, plus rotating fellows, residents
and students, and appointments are required. The liver
clinic in Beijing is tertiary hospital based, and providers
include 16 hepatology faculty and a few students. The liver
clinic in Hebei is community hospital based, and providers
only include 4 hepatology faculty. Appointments are not
necessary in the two Chinese sites. Average time for a
return clinic visit in these three sites is 20, 5, and 5 min,
respectively.
Adults (C18 years) with a known diagnosis of liver
disease, who had at least two prior visits to the same clinic,
were included. Patients were approached during their clinic
visit, and verbal informed consent was obtained. Patients
could choose to self-administer the survey or have a trained
researcher read the questions verbatim and record the
answers for them.
The study was reviewed and approved by the Institu-
tional Review Boards of both the University of Michigan
and Peking University.
Survey Design
The survey consisted of four sections: (1) knowledge about
their liver disease, (2) preferences in medical decision-
making, (3) satisfaction with their liver care, and (4)
demographics. In the patient knowledge section, we had
one question on patients’ self-assessment of their knowl-
edge and five questions about general knowledge of liver
diseases: The liver disease you have ‘‘is infectious,’’ ‘‘is
inherited,’’ ‘‘can cause cirrhosis,’’ ‘‘can cause liver can-
cer,’’ and ‘‘can be prevented by vaccination.’’ In the
medical decision-making section, one key question asked
patients whether they preferred medical decisions to be
made by ‘‘the doctor entirely,’’ ‘‘the doctor, considering my
preferences,’’ ‘‘me and the doctor together,’’ ‘‘me, consid-
ering input from the doctor,’’ or ‘‘me entirely.’’ For patient
satisfaction, although one questionnaire had been used to
assess patient satisfaction with liver disease care, it was
2848 Dig Dis Sci (2016) 61:2847–2856
123
studied in only 152 patients in the Netherlands and has not
been externally validated [14]. We chose to use a ques-
tionnaire developed by the National Cancer Institute
(NCI)-sponsored Patient Navigation Research Program
because it has been used in many studies on patients of
diverse racial/ethnic background [12, 20, 21]. The NCI
questionnaire included 18 items measured on a five-point
Likert scale ranging from ‘‘Definitely No’’ to ‘‘Definitely
Yes.’’ We revised the wording in a few items to specify
that we were assessing satisfaction with liver care only. We
deleted the item ‘‘I received high-quality care from my
regular doctor’’ because most patients in China do not have
primary care physicians and added an item ‘‘I will rec-
ommend my liver doctor to friends and family’’ to measure
overall satisfaction with liver care.
The survey was developed in English and then translated
into Chinese by professional translators in China. Accuracy
of the translation was verified by two native Chinese-
speaking investigators in the USA. The survey was pilot-
tested in 20 patients in the USA and in Beijing and revised
based on their feedback.
Data Analyses
Data analyses were performed using IBM SPSS Statistics
(SPSS, version 21). Patients were excluded from the
analyses if the demographics section was incomplete.
Descriptive statistics were used to describe the patient
populations and their responses. For comparisons of
knowledge, we assigned scores of 0 for incorrect or ‘‘don’t
know’’ responses and 1 for correct responses to each of the
five knowledge questions. An overall knowledge score
(maximum 5) was computed by adding the scores of the 5
items. We tested the validity of the NCI questionnaire on
patient satisfaction by exploratory factor analysis for latent
structure and its internal consistency by Cronbach coeffi-
cient alpha (a). We found a 1-dimensional measure with 17
of 18 items in the questionnaire forming a coherent set
explaining 71.8 % of the variance in patient satisfaction in
the USA, 65.3 % in Beijing, and 67.9 % in Hebei. In
subsequent analyses, we removed the outlier item ‘‘My
regular doctor (primary care doctor or family doctor) was
informed about the results of the tests I got for my liver
disease.’’ Reliability assessment revealed that the remain-
ing questionnaire had high internal consistency (0.97 in the
USA, 0.94 in Beijing, and 0.95 in Hebei). We assigned
scores of 1–5 for responses to each item in the question-
naire with a score of 1 for a response of ‘‘Definitely No’’
and a score of 5 for a response of ‘‘Definitely Yes.’’ An
overall satisfaction score (maximum 85) was computed by
adding the scores of the 17 validated items.
Comparison between groups was performed using Chi-
squared test for categorical data and ANOVA test or
nonparametric test for numerical data. Pearson’s correla-
tion was used for correlation of parametric data and
Spearman’s correlation coefficient for nonparametric data.
General linear model was used to evaluate factors inde-
pendently associated with patient satisfaction with liver
disease care. Exploratory independent variables included
study site, sex, age, education, type of liver disease (HBV,
HCV, or others), duration of liver disease diagnosis,
duration of follow-up at the liver clinic, patients’ assess-
ment of their knowledge, liver disease knowledge score,
and preference for medical decision-making. p val-
ues  0.05 were considered statistically significant.
Results
A total of 1019 patients (413 USA, 406 Beijing, and 200
Hebei) participated. Twenty-nine patients (18 USA, 8
Beijing, and 3 Hebei) were excluded because responses to
questions on demographics were incomplete, and 990
patients (395 USA, 398 Beijing, and 197 Hebei) were
included in the analyses.
Characteristics of Patients Analyzed
Demographics and diagnoses of the patients are shown in
Table 1. More than half the patients were male: 67.5 % in
Hebei, 62.6 % in Beijing, and 53.2 % in the USA
(p = 0.001). Mean ages of US, Beijing, and Hebei patients
were 55.2, 53.0, and 49.0 years, respectively (p  0.001).
Beijing patients were most likely to have college or post-
graduate education, followed by US patients, while few
Hebei patients had higher education (67.3 % Beijing vs.
57.7 % USA vs. 7.1 % Hebei, p  0.001). US patients
were predominantly white (80.0 %); almost all (94.0 %)
Beijing, but only 33.0 % Hebei patients were Han Chinese.
Most common liver diseases in the USA were HCV
(43.5 %), autoimmune liver diseases (16.5 %), and
NAFLD (10.9 %), while the most common liver diseases in
Beijing and Hebei were HBV (67.8 and 49.2 %) and HCV
(14.8 and 42.2 %). Beijing and US patients had been
diagnosed with their liver disease (p  0.001) and followed
up in the liver clinic (p  0.001) longer than those in
Hebei.
Liver Disease Knowledge and Medical Decision-
Making
A higher percentage of US (69.9 %) and Beijing (51.3 %)
patients reported knowing ‘‘a fair amount’’ or ‘‘a lot’’ about
their liver disease compared to Hebei (31.3 %) patients
(p  0.001). Mean knowledge scores (maximum 5) for all
Dig Dis Sci (2016) 61:2847–2856 2849
123
sites combined was 3.7 ± 1.2. US patients scored the
highest (4.1 ± 0.9), followed by Beijing (3.6 ± 1.1) and
then Hebei patients (3.0 ± 1.4) (p  0.001).
Most (71.8 %) US patients preferred collaborative
decisions with physicians, while Chinese patients (74.6 %
Beijing and 84.8 % Hebei) preferred physicians to make
medical decisions entirely or with their input (Table 2).
There was a positive correlation between liver disease
knowledge score and collaborative medical decision-mak-
ing (r = 0.22, p  0.001) when responses from all sites
were combined.
Patient Satisfaction with Liver Disease Care
Patient responses to the 17 items that measured satisfaction
with liver disease care at the three sites are shown in Fig. 1.
US patients were significantly more satisfied with their
liver care than the Chinese patients in all 17 items with
62.5–87.8 % US patients compared to 29.9–52.8 % Beijing
patients and 10.2–56.9 % Hebei patients selecting ‘‘Defi-
nitely Yes’’ in response to each item.
The average scores for each of the 17 items (maximum
5) ranged from 4.3 to 4.8 in US patients, 3.6 to 4.3 in
Beijing patients, and 2.5 to 4.4 in Hebei patients (Table 3).
Among the 17 items, the item ‘‘I felt that I was treated with
courtesy and respect’’ scored well for all three sites with
mean scores of 4.8, 4.3, and 4.0 in the USA, Beijing, and
Hebei, respectively, while the item ‘‘I knew what the next
step in the care of my liver disease would be’’ had a low
score for all three sites with mean scores of 4.3, 3.8, and
2.8 in the USA, Beijing, and Hebei, respectively. The item
‘‘I felt included in decisions about my health’’ showed the
Table 1 Characteristics of patients by study site
USA Beijing Hebei p value
Total 395 398 197
Sex, men [n (%)] 210 (53.2) 249 (62.6) 133 (67.5) 0.001
Mean age (SD) (year) 55.2 (12.1) 53.0 (14.4) 49.0 (11.5) 0.001
Race/ethnicity [n (%)]
White 316 (80.0) Han 374 (94.0) Han 65 (33.0)
African-American 31 (7.8) Non-Han 23 (5.7) Non-Han 132 (67.0)
Other 48 (12.2) Other 1 (0.3) Other 0 (0.0)
Education level [n (%)] 0.001
High school or less 167 (42.3) 130 (32.7) 183 (92.9)
College/university 163 (41.3) 217 (54.5) 14 (7.1)
Graduate/professional school 65 (16.4) 51 (12.8) 0 (0.0)
Liver disease type [n (%)] 0.001
Hepatitis B 28 (7.1) 270 (67.8) 97 (49.2)
Hepatitis C 172 (43.5) 59 (14.8) 83 (42.2)
Alcoholic liver disease 27 (6.8) 8 (2.0) 8 (4.1)
Nonalcoholic fatty liver disease 43 (10.9) 11 (2.8) 5 (2.5)
Drug-induced liver injury 7 (1.8) 11 (2.8) 2 (1.0)
Autoimmune liver disease 65 (16.5) 27 (6.8) 1 (0.5)
Inherited metabolic liver disease 15 (3.8) 0 (0.0) 1 (0.5)
Other or unknown 38 (9.6) 12 (3.0) 0 (0.0)
Duration of diagnosis of liver disease [n (%)] 0.001
Less than 1 year ago 14 (3.5) 42 (10.6) 41 (20.8)
1–5 years ago 138 (34.9) 71 (17.8) 71 (36.0)
5–10 years ago 91 (23.1) 50 (12.6) 36 (18.3)
More than 10 years ago 152 (38.5) 235 (59.0) 49 (24.9)
Duration of follow-up at liver clinic [n (%)] 0.001
Less than 1 year 33 (8.4) 81 (20.4) 71 (36.0)
1–2 years 87 (22.1) 60 (15.1) 38 (19.3)
2–5 years 115 (29.2) 85 (21.3) 58 (29.5)
5–10 years 89 (22.6) 73 (18.3) 16 (8.1)
More than 10 years 70 (17.7) 99 (24.9) 14 (7.1)
SD standard deviation
2850 Dig Dis Sci (2016) 61:2847–2856
123
biggest difference in responses across the three sites with
mean scores of 4.7, 3.9, and 2.5 in the USA, Beijing, and
Hebei, respectively. The mean overall satisfaction score
(maximum = 85) for all 17 items was significantly higher
for US patients than for Beijing patients, which in turn was
higher than in Hebei patients (78.2 vs. 66.5 vs. 60.3,
p  0.001).
Factors Associated with Patient Satisfaction
with Liver Disease Care
When responses from all three sites were combined, there
was a positive correlation between liver disease knowledge
score and satisfaction score (r = 0.27, p  0.001). General
linear model showed that study site, patients’ assessment of
their knowledge, and liver disease knowledge score were
significant predictors of patient satisfaction with liver dis-
ease care. When responses were analyzed by site, age was
the only significant predictor of patient satisfaction with
liver disease care in US patients, while patients’ assessment
of their knowledge and liver disease knowledge score were
significant predictors in Beijing patients. Age, patients’
assessment of their knowledge, and liver disease knowl-
edge score were significant predictors in Hebei patients
(Table 4).
Discussion
In this survey of almost 1000 patients with chronic liver
disease, patient knowledge of their liver disease and sat-
isfaction with liver care in the USA were better than in
urban China, which in turn was better than in rural China.
As far as we know, our study is the first to comprehensively
assess patient satisfaction with liver disease care and to
compare patient satisfaction in the USA and China. Our
patient satisfaction questions, adapted from Jean-Pierre’s
Patient Satisfaction with Cancer Care, were shown to be
highly reliable and internally consistent.
Multiple factors contribute to patient satisfaction,
including patient factors (knowledge about their disease,
expectations, education), provider factors (attitude, time
spent educating patients and explaining diagnosis and care
plans, knowledge and experience), and system factors (ease
of scheduling clinic appointments, time available for each
clinic visit, availability of ancillary staff such as nurses to
facilitate care and communications, clinic environment)
[22]. Understanding which aspect of care patients are least
satisfied with and the factors associated with patient dis-
satisfaction can provide insights into interventions that will
improve patient satisfaction and ultimately patient
outcomes.
Table 2 Patient knowledge
about their liver disease and
medical decision-making
preference by study site
USA Beijing Hebei p value
Patients’ assessment of their knowledge [n (%)] 0.001
Nothing 14 (3.5) 11 (2.8) 23 (11.7)
A little bit 105 (26.6) 183 (46.0) 112 (57.1)
A fair amount 191 (48.4) 173 (43.5) 52 (26.5)
A lot 85 (21.5) 31 (7.8) 9 (4.6)
Liver disease knowledge score, mean (SD)
Overall 4.1 (0.9) 3.6 1.1) 3.0 (1.4) 0.001
Hepatitis B 3.8 (1.1) 3.6 (1.1) 3.0 (1.3) 0.001
Hepatitis C 4.3 (0.9) 3.5 (1.3) 3.0 (1.4) 0.001
Alcoholic liver disease 4.2 (0.7) 3.6 (0.9) 3.9 (1.1) 0.26
Nonalcoholic fatty liver disease 3.8 (1.0) 3.4 (0.9) 3.6 (1.5) 0.51
Drug-induced liver injury 4.1 (0.7) 3.0 (1.0) 1.5 (2.1) 0.01
Autoimmune liver disease 4.0 (1.0) 3.9 (0.8) 2.0 (0.0) 0.09
Inherited metabolic liver disease 4.3 (0.6) NA 0.0 (0.0) 0.001
Medical decision-making [n (%)] 0.001
By the doctor entirely 33 (8.4) 151 (37.9) 89 (45.2)
By the doctor, considering my preferences 43 (10.9) 146 (36.7) 78 (39.6)
By me and the doctor together 282 (71.8) 89 (22.4) 23 (11.7)
By me, considering input from the doctor 34 (8.7) 11 (2.8) 6 (3.0)
By me entirely 1 (0.3) 1 (0.3) 1 (0.5)
SD standard deviation, NA not applicable
Dig Dis Sci (2016) 61:2847–2856 2851
123
Regarding patient factors, our study showed that patient
knowledge correlated with patient satisfaction. Self-
assessment of liver disease knowledge showed that US
patients were more likely to report greater knowledge than
Chinese patients. While this difference may be related to
cultural differences with Chinese culture placing a greater
emphasis on humility and the US culture on self-confi-
dence, the self-assessment by patients correlated with their
Fig. 1 Patient responses to the
17 items that measured
satisfaction with liver disease
care at the three study sites:
a the USA, n = 395; b Beijing,
n = 398; c Hebei, n = 197
2852 Dig Dis Sci (2016) 61:2847–2856
123
Table 3 Average scores of responses to patient satisfaction questions by study site
USA Beijing Hebei
(a) I felt that my health concerns were understood 4.7 3.9 3.8
(b) I felt that I was treated with courtesy and respect 4.8 4.3 4.0
(c) I felt included in decisions about my health 4.7 3.9 2.5
(d) I was told how to take care of my liver disease 4.5 4.3 3.9
(e) I felt encouraged to talk about my personal health concerns 4.6 3.8 3.4
(f) I felt I had enough time with my doctor 4.5 3.7 3.6
(g) My questions were answered to my satisfaction 4.6 4.2 3.8
(h) Making an appointment was easy 4.6 3.9 4.4
(i) I knew what the next step in the care of my liver disease would be 4.3 3.8 2.8
(j) I feel confident in how I deal with the liver team 4.5 3.6 3.6
(k) I was able to get the advice I needed about my health issues 4.6 4.0 3.7
(l) I knew who to contact when I had a question 4.5 3.9 3.8
(m) I received all the services I needed 4.6 3.9 3.3
(n) I am satisfied with the care I received 4.7 4.2 3.6
(o) Members of the liver team (doctors, nurses, physician assistants, etc.) seemed to communicate well about my care 4.6 3.8 2.8
(p) I received high-quality care from my liver team 4.7 3.7 3.5
(q) I will recommend my liver doctor to friends and family 4.7 3.6 3.8
Mean overall satisfaction scorea,b,c,d
78.2 66.5 60.3
Comparisons of mean overall satisfaction score a
among three sites, b
between USA and Beijing, c
between USA and Hebei, d
between Beijing
and Hebei, all p  0.001
We removed the outlier item ‘‘My regular doctor (primary care doctor or family doctor) was informed about the results of the tests I got for my
liver disease’’
Table 4 Factors associated with patient satisfaction with liver disease care
Cohort Variable Coefficient 95 % CI p value
Three cohorts
combined
Site (vs. Hebei)
USA 14.3 11.2 to 17.4 0.001
Beijing 5.3 2.7 to 7.9 0.001
Patients’ assessment of their knowledge (a fair amount and a lot vs. nothing and a
little bit)
3.4 1.5 to 5.3 0.001
Liver disease knowledge scorea
1.5 0.7 to 2.2 0.001
USA Ageb
0.2 0.1 to 0.3 0.002
Beijing Patients’ assessment of their knowledge (a fair amount and a lot vs. nothing and a
little bit)
4.8 1.9 to 7.7 0.001
Liver disease knowledge score 1.4 0.2 to 2.6 0.019
Hebei Age -0.3 -0.4 to
-0.1
0.003
Patients’ assessment of their knowledge (a fair amount and a lot vs. nothing and a
little bit)
5.9 1.5 to 10.2 0.009
Liver disease knowledge score 2.0 0.4 to 3.5 0.012
CI confidence Interval
a
Coefficient for liver disease knowledge score is difference of patient satisfaction score by 1 liver disease knowledge score
b
Coefficient for age is difference of patient satisfaction score by 1 year
Dig Dis Sci (2016) 61:2847–2856 2853
123
knowledge score. Higher knowledge scores have been
reported to be associated with greater satisfaction with care
[23–25]. Our data suggest that improving patients’ under-
standing of their disease could improve their satisfaction
with care. Increased knowledge about one’s disease might
help patients understand what symptoms and outcomes to
expect, what treatment options are available, and how
effective they are. Setting realistic expectations might
decrease frustrations and disappointment particularly when
the outcomes are unfavorable. In our study, age was a
predictor of patient satisfaction in the USA and Hebei.
Most previous studies found that older age was signifi-
cantly associated with higher satisfaction scores [26, 27].
We found the same trend in US patients, but the opposite
trend in Hebei patients. The reason for the difference in
Hebei might be the older patients there had lower education
level and poorer communication with physicians. We
found that sex and education were not predictors of patient
satisfaction. A meta-analysis also found that the effects of
gender and education on patient satisfaction were mixed
[28]. We had hypothesized that patients with different liver
diseases might differ in their satisfaction with care, but this
was not the case when results were analyzed by site and
combined.
Regarding provider factors, our study showed all three
sites scored well on the item ‘‘I felt that I was treated with
courtesy and respect.’’ Treating patients with respect and
empathy is a fundamental component of medical educa-
tion, but with increasing technological advances in medi-
cine, time spent on training physicians on humanities and
art of medicine may be eroded. Traditionally, the practice
of medicine in China tended to be paternalistic. It is reas-
suring to see that a high percent of patients at the two
Chinese sites felt they were treated with courtesy and
respect. Our study indicates that patient dissatisfaction
arose from inadequate or poor communications between
physician and patient. The item ‘‘I knew what the next step
in the care of my liver disease would be’’ had a lower score
for all three sites. Having patients understand the next step
in their care is important, so they can adhere to the care
plan. Communicating to patients using terms that they can
understand and repeating the message in different formats
are important, particularly for patients with less education
and/or limited knowledge about their disease. The item ‘‘I
felt included in decisions about my health’’ showed the
biggest difference in responses across the three sites.
Although many Chinese patients preferred their doctors to
make decisions on their care, many desired to be involved
in the decision as evident by the fact that 36.7 % of Beijing
and 39.6 % of Hebei patients would like their physicians to
consider their preferences in making decisions. Our find-
ings indicate that physicians at all three sites should work
on improving communication of care plans with patients.
Regarding system factors, there are major differences in
how health care is delivered and how clinics are run
between the USA and China. Most Chinese do not have
family doctors or primary care physicians, so they tend to
go to specialty clinics for all their health problems. The
lack of systematic referral systems and the uneven distri-
bution of medical resources in China lead to overcrowding
of patients in large hospitals in China [29]. Furthermore,
most clinics in China do not have appointment systems,
and patients show up similar to walk-in clinics in the USA.
The current healthcare system in China creates multiple
problems which cause patient dissatisfaction: the clinics
are crowded, the physicians cannot plan ahead, and each
patient has limited (often 5 min or less) time with the
physician after waiting in line for hours. In recent years,
China has implemented reforms to the healthcare system.
In 2009, all public tertiary hospitals supported by the
Ministry of Health began to use Web-based appointment
systems, but only a small percent of patients actually use
the system with most patients still choosing walk-in reg-
istration, and clinics in tertiary hospitals continue to see
patients who do not have appointments [30]. The differ-
ences in healthcare delivery systems in the USA and China
must be considered when comparing patient satisfaction in
the two countries. Our study found lower scores on the item
‘‘I felt I had enough time with my doctor’’ at the Chinese
sites. Time constraint may also account for lower scores on
several related items such as ‘‘I felt encouraged to talk
about my personal health concerns’’ at the Chinese sites. In
addition to training physicians to maximize efficiency
during the short time they have with their patients, other
solutions such as use of physician extenders and electronic
communications might supplement the deficiency in face
time with physicians. While mid-level providers and nurses
play an important role in the management of patients with
chronic liver diseases and electronic health records with
patient portals are universal in the USA, these services are
rare in urban China and nonexistent in rural China.
We found a striking difference in patient preference for
medical decision-making between patients in the USA and
those in China with the majority of US patients preferring
collaborative decision-making and the majority of Chinese
patients preferring decisions made by the doctor. Consid-
ering that previous studies have postulated that despite
cultural differences all patients in the USA and China
preferred a collaborative decision-making style [31], it is
interesting that our study challenges this concept and
invokes more insight into cultural relativity. Some studies
have shown that patients who are more knowledgeable
about their disease are more likely to be involved in
deciding how they should be managed [32]. We also found
a correlation between higher knowledge score and prefer-
ence for collaborative decision-making, emphasizing the
2854 Dig Dis Sci (2016) 61:2847–2856
123
importance of educating patients so they can actively
participate in making decisions about their care.
Our study provided a comparison of patient knowl-
edge, preference for medical decision-making, and satis-
faction with liver care, not only between patients in the
USA and China, but also between urban and rural China.
Our study site in Hebei is a rural Manchu Autonomous
Region, and the majority of the residents are Manchus
with limited education. We found that patient knowledge
score and satisfaction scores in Hebei were significantly
lower than in Beijing, but preference for medical deci-
sion-making was similar. These differences were not
related to differences in patient ethnicity as all three
measures were similar between Han and non-Han Chinese
in Hebei and more likely a reflection of the gap in edu-
cation, economy, and health infrastructure between rural
and urban China [33].
There were several limitations to this study. First, only
one liver clinic was included in each site, and the study
cohorts may not be fully representative of US and urban
and rural Chinese patients. Second, we were only able to
ask very general knowledge questions since we used the
same questionnaire for all liver diseases. Finally, some
patients completed the survey on their own, while others
had the survey administered by researchers; however,
researchers were trained to read the survey verbatim and
we did not find any systematic differences in responses
between the two administration methods.
In summary, liver disease knowledge and patient satis-
faction were greatest in the USA, followed by Beijing and
then Hebei patients. Improving patients’ understanding of
their disease would improve their satisfaction with care and
their engagement in medical decision-making. Our findings
can be used to design interventions to improve patient
satisfaction of liver disease care and ultimately patient
outcomes.
Acknowledgments Ming Yang was supported by US National
Institutes of Health Research Training Grant 3R25TW009345 awar-
ded to the Northern Pacific Global Health Fellows Program by the
Fogarty International Center and Institutes. Fanny H. Du was sup-
ported by the University of Michigan Medical School Faculty-Led
Global Reach Program for medical students. Angela Xie, Cassandra
Rodd, and Shanna Cheng are undergraduate students supported by the
Alice Lohrman Andrews Research Professorship (to Anna S. Lok).
Lai Wei and Anna S. Lok are supported by grants from the University
of Michigan Health System and Peking University Health Science
Center Joint Institute for Clinical and Translational Research.
Compliance with ethical standards
Conflict of interest Ming Yang, Elizabeth Wu, Huiying Rao, Fanny
H. Du, Angela Xie, Shanna Cheng, Cassandra Rodd, Andy Lin, Lai
Wei, and Anna S. Lok declare that they have no conflict of interest
related to this work.
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art%3A10.1007%2Fs10620-016-4206-2

  • 1. ORIGINAL ARTICLE A Comparative Study of Liver Disease Care in the USA and Urban and Rural China Ming Yang1 • Elizabeth Wu2 • Huiying Rao1 • Fanny H. Du3 • Angela Xie2 • Shanna Cheng2 • Cassandra Rodd2 • Andy Lin4 • Lai Wei1 • Anna S. Lok2,5 Received: 28 February 2016 / Accepted: 17 May 2016 / Published online: 2 June 2016 Ó Springer Science+Business Media New York 2016 Abstract Background Chronic liver disease is a major cause of morbidity and mortality in the USA and China, but the etiology of liver disease, medical practice, and patient expectations in these two countries are different. Aims To compare patient knowledge about their liver disease, patient satisfaction with liver disease care, and patient medical decision-making preference in the USA and China. Methods Three cohorts of established adult patients with liver disease seen in liver clinics in Ann Arbor, USA, and Beijing (urban) and Hebei (rural), China, completed a survey between May and September 2014. Results A total of 990 patients (395 USA, 398 Beijing, and 197 Hebei) were analyzed. Mean liver disease knowledge score (maximum 5) in the USA, Beijing, and Hebei patients was 4.1, 3.6, and 3.0, respectively (p 0.001). US patients had a greater preference for collaborative decision- making: 71.8 % preferred to make treatment decisions together with the doctor, while most Chinese patients (74.6 % Beijing and 84.8 % Hebei) preferred passive decision-making. Mean satisfaction score (maximum 85) in the USA was higher than in Beijing, which in turn was higher than in Hebei (78.2 vs. 66.5 vs. 60.3, p 0.001). There was a positive correlation between liver disease knowledge score and satisfaction score (r = 0.27, p 0.001) and with collaborative medical decision-mak- ing (r = 0.22, p 0.001) when responses from all sites were combined. Conclusions Liver disease knowledge and patient satis- faction were greatest in the USA, followed by Beijing and & Anna S. Lok aslok@med.umich.edu Ming Yang ymicecream@163.com Elizabeth Wu elizwu@med.umich.edu Huiying Rao raohuiying@pkuph.edu.cn Fanny H. Du fannydu@med.umich.edu Angela Xie axie@med.umich.edu Shanna Cheng shanna.cheng@gmail.com Cassandra Rodd calyrodd@umich.edu Andy Lin andylin@umich.edu Lai Wei weilai@pkuph.edu.cn 1 Hepatology Institute, Peking University People’s Hospital, Peking University Health Science Center, 11 South Xizhimen St, Beijing 100044, China 2 Division of Gastroenterology and Hepatology, University of Michigan Health System, 1150 W Medical Center Drive, 4321 Med Sci I, Ann Arbor, MI 48109, USA 3 University of Michigan Medical School, 1301 Catherine Street, Ann Arbor, MI 48109, USA 4 The Molecular and Behavioral Neuroscience Institute, University of Michigan, 205 Zina Pitcher Pl, Ann Arbor, MI 48109, USA 5 University of Michigan Health System, 1500 E Medical Center Drive, 3912 Taubman Center, SPC 5362, Ann Arbor, MI 48109, USA 123 Dig Dis Sci (2016) 61:2847–2856 DOI 10.1007/s10620-016-4206-2
  • 2. then Hebei patients. Understanding these differences and associated factors may help to improve patient outcomes. Keywords Knowledge gaps Á Healthcare delivery Á Hepatitis Á Cultural differences Á Medical decision-making Introduction Chronic liver disease is a major cause of morbidity and mortality in both the USA and China. It is estimated that approximately 15 % of the US population and 28 % of the Chinese population has chronic liver disease, but the eti- ology of liver disease, medical practice, and patient expectations in these two countries are different [1–3]. Nonalcoholic fatty liver disease (NAFLD), hepatitis C virus (HCV), and alcoholic liver disease (ALD) account for the majority of liver diseases in the USA, while hepatitis B virus (HBV), NAFLD, and ALD are the most common liver diseases in China [2, 3]. Many studies have shown that patient satisfaction with their care is associated with increased adherence and improved outcomes [4–6]. Patient satisfaction is an important metric of quality of care in Western countries [7–9], but until recently has received little attention in China [10, 11]. Most studies on patient satisfaction have focused on satisfaction with cancer or pain care [5, 12, 13], and rarely on liver disease care [14]. Patient knowledge about their illness has been reported to cor- relate with satisfaction with care and to influence uptake of treatment, adherence, and outcomes [15]. Studies of patients with HBV and HCV showed increasing patients’ knowledge increased uptake of screening and treatment as well as compliance with treatment [15–17], but data on knowledge gaps in other types of liver diseases are lim- ited. Evidence suggests that a patient-centered approach to healthcare management improves a patient’s overall satisfaction with care and may lead to reduced associated symptoms [18]. Shared decision-making has gained attention in the medical field over the last decade [19]. In many countries, such as the USA, shared decision-making is the norm; but in some countries, such as China, med- ical practice remains largely paternalistic and physicians make most of the decisions. Given the huge burden of chronic liver disease in both the USA and China and the differences in culture and medical practice, we conducted this study to compare US and Chinese patients’ knowledge of their liver disease, satisfaction with liver disease care, and medical decision- making preferences, and to determine the factors associated with patients’ satisfaction with liver disease care. Materials and Methods Subject Recruitment Consecutive established patients with liver diseases seen in liver clinics at a tertiary hospital in Ann Arbor, Michigan, USA; an urban tertiary hospital in Beijing, China; and a rural community hospital in Hebei Province, China, were invited to participate in a survey study between May and September 2014. The site in Hebei Province is 150 miles away from Beijing, and most residents there are farmers with limited education. The liver clinic in the USA is hospital based, and providers include 10 hepatology faculty and 4 mid-level providers, plus rotating fellows, residents and students, and appointments are required. The liver clinic in Beijing is tertiary hospital based, and providers include 16 hepatology faculty and a few students. The liver clinic in Hebei is community hospital based, and providers only include 4 hepatology faculty. Appointments are not necessary in the two Chinese sites. Average time for a return clinic visit in these three sites is 20, 5, and 5 min, respectively. Adults (C18 years) with a known diagnosis of liver disease, who had at least two prior visits to the same clinic, were included. Patients were approached during their clinic visit, and verbal informed consent was obtained. Patients could choose to self-administer the survey or have a trained researcher read the questions verbatim and record the answers for them. The study was reviewed and approved by the Institu- tional Review Boards of both the University of Michigan and Peking University. Survey Design The survey consisted of four sections: (1) knowledge about their liver disease, (2) preferences in medical decision- making, (3) satisfaction with their liver care, and (4) demographics. In the patient knowledge section, we had one question on patients’ self-assessment of their knowl- edge and five questions about general knowledge of liver diseases: The liver disease you have ‘‘is infectious,’’ ‘‘is inherited,’’ ‘‘can cause cirrhosis,’’ ‘‘can cause liver can- cer,’’ and ‘‘can be prevented by vaccination.’’ In the medical decision-making section, one key question asked patients whether they preferred medical decisions to be made by ‘‘the doctor entirely,’’ ‘‘the doctor, considering my preferences,’’ ‘‘me and the doctor together,’’ ‘‘me, consid- ering input from the doctor,’’ or ‘‘me entirely.’’ For patient satisfaction, although one questionnaire had been used to assess patient satisfaction with liver disease care, it was 2848 Dig Dis Sci (2016) 61:2847–2856 123
  • 3. studied in only 152 patients in the Netherlands and has not been externally validated [14]. We chose to use a ques- tionnaire developed by the National Cancer Institute (NCI)-sponsored Patient Navigation Research Program because it has been used in many studies on patients of diverse racial/ethnic background [12, 20, 21]. The NCI questionnaire included 18 items measured on a five-point Likert scale ranging from ‘‘Definitely No’’ to ‘‘Definitely Yes.’’ We revised the wording in a few items to specify that we were assessing satisfaction with liver care only. We deleted the item ‘‘I received high-quality care from my regular doctor’’ because most patients in China do not have primary care physicians and added an item ‘‘I will rec- ommend my liver doctor to friends and family’’ to measure overall satisfaction with liver care. The survey was developed in English and then translated into Chinese by professional translators in China. Accuracy of the translation was verified by two native Chinese- speaking investigators in the USA. The survey was pilot- tested in 20 patients in the USA and in Beijing and revised based on their feedback. Data Analyses Data analyses were performed using IBM SPSS Statistics (SPSS, version 21). Patients were excluded from the analyses if the demographics section was incomplete. Descriptive statistics were used to describe the patient populations and their responses. For comparisons of knowledge, we assigned scores of 0 for incorrect or ‘‘don’t know’’ responses and 1 for correct responses to each of the five knowledge questions. An overall knowledge score (maximum 5) was computed by adding the scores of the 5 items. We tested the validity of the NCI questionnaire on patient satisfaction by exploratory factor analysis for latent structure and its internal consistency by Cronbach coeffi- cient alpha (a). We found a 1-dimensional measure with 17 of 18 items in the questionnaire forming a coherent set explaining 71.8 % of the variance in patient satisfaction in the USA, 65.3 % in Beijing, and 67.9 % in Hebei. In subsequent analyses, we removed the outlier item ‘‘My regular doctor (primary care doctor or family doctor) was informed about the results of the tests I got for my liver disease.’’ Reliability assessment revealed that the remain- ing questionnaire had high internal consistency (0.97 in the USA, 0.94 in Beijing, and 0.95 in Hebei). We assigned scores of 1–5 for responses to each item in the question- naire with a score of 1 for a response of ‘‘Definitely No’’ and a score of 5 for a response of ‘‘Definitely Yes.’’ An overall satisfaction score (maximum 85) was computed by adding the scores of the 17 validated items. Comparison between groups was performed using Chi- squared test for categorical data and ANOVA test or nonparametric test for numerical data. Pearson’s correla- tion was used for correlation of parametric data and Spearman’s correlation coefficient for nonparametric data. General linear model was used to evaluate factors inde- pendently associated with patient satisfaction with liver disease care. Exploratory independent variables included study site, sex, age, education, type of liver disease (HBV, HCV, or others), duration of liver disease diagnosis, duration of follow-up at the liver clinic, patients’ assess- ment of their knowledge, liver disease knowledge score, and preference for medical decision-making. p val- ues 0.05 were considered statistically significant. Results A total of 1019 patients (413 USA, 406 Beijing, and 200 Hebei) participated. Twenty-nine patients (18 USA, 8 Beijing, and 3 Hebei) were excluded because responses to questions on demographics were incomplete, and 990 patients (395 USA, 398 Beijing, and 197 Hebei) were included in the analyses. Characteristics of Patients Analyzed Demographics and diagnoses of the patients are shown in Table 1. More than half the patients were male: 67.5 % in Hebei, 62.6 % in Beijing, and 53.2 % in the USA (p = 0.001). Mean ages of US, Beijing, and Hebei patients were 55.2, 53.0, and 49.0 years, respectively (p 0.001). Beijing patients were most likely to have college or post- graduate education, followed by US patients, while few Hebei patients had higher education (67.3 % Beijing vs. 57.7 % USA vs. 7.1 % Hebei, p 0.001). US patients were predominantly white (80.0 %); almost all (94.0 %) Beijing, but only 33.0 % Hebei patients were Han Chinese. Most common liver diseases in the USA were HCV (43.5 %), autoimmune liver diseases (16.5 %), and NAFLD (10.9 %), while the most common liver diseases in Beijing and Hebei were HBV (67.8 and 49.2 %) and HCV (14.8 and 42.2 %). Beijing and US patients had been diagnosed with their liver disease (p 0.001) and followed up in the liver clinic (p 0.001) longer than those in Hebei. Liver Disease Knowledge and Medical Decision- Making A higher percentage of US (69.9 %) and Beijing (51.3 %) patients reported knowing ‘‘a fair amount’’ or ‘‘a lot’’ about their liver disease compared to Hebei (31.3 %) patients (p 0.001). Mean knowledge scores (maximum 5) for all Dig Dis Sci (2016) 61:2847–2856 2849 123
  • 4. sites combined was 3.7 ± 1.2. US patients scored the highest (4.1 ± 0.9), followed by Beijing (3.6 ± 1.1) and then Hebei patients (3.0 ± 1.4) (p 0.001). Most (71.8 %) US patients preferred collaborative decisions with physicians, while Chinese patients (74.6 % Beijing and 84.8 % Hebei) preferred physicians to make medical decisions entirely or with their input (Table 2). There was a positive correlation between liver disease knowledge score and collaborative medical decision-mak- ing (r = 0.22, p 0.001) when responses from all sites were combined. Patient Satisfaction with Liver Disease Care Patient responses to the 17 items that measured satisfaction with liver disease care at the three sites are shown in Fig. 1. US patients were significantly more satisfied with their liver care than the Chinese patients in all 17 items with 62.5–87.8 % US patients compared to 29.9–52.8 % Beijing patients and 10.2–56.9 % Hebei patients selecting ‘‘Defi- nitely Yes’’ in response to each item. The average scores for each of the 17 items (maximum 5) ranged from 4.3 to 4.8 in US patients, 3.6 to 4.3 in Beijing patients, and 2.5 to 4.4 in Hebei patients (Table 3). Among the 17 items, the item ‘‘I felt that I was treated with courtesy and respect’’ scored well for all three sites with mean scores of 4.8, 4.3, and 4.0 in the USA, Beijing, and Hebei, respectively, while the item ‘‘I knew what the next step in the care of my liver disease would be’’ had a low score for all three sites with mean scores of 4.3, 3.8, and 2.8 in the USA, Beijing, and Hebei, respectively. The item ‘‘I felt included in decisions about my health’’ showed the Table 1 Characteristics of patients by study site USA Beijing Hebei p value Total 395 398 197 Sex, men [n (%)] 210 (53.2) 249 (62.6) 133 (67.5) 0.001 Mean age (SD) (year) 55.2 (12.1) 53.0 (14.4) 49.0 (11.5) 0.001 Race/ethnicity [n (%)] White 316 (80.0) Han 374 (94.0) Han 65 (33.0) African-American 31 (7.8) Non-Han 23 (5.7) Non-Han 132 (67.0) Other 48 (12.2) Other 1 (0.3) Other 0 (0.0) Education level [n (%)] 0.001 High school or less 167 (42.3) 130 (32.7) 183 (92.9) College/university 163 (41.3) 217 (54.5) 14 (7.1) Graduate/professional school 65 (16.4) 51 (12.8) 0 (0.0) Liver disease type [n (%)] 0.001 Hepatitis B 28 (7.1) 270 (67.8) 97 (49.2) Hepatitis C 172 (43.5) 59 (14.8) 83 (42.2) Alcoholic liver disease 27 (6.8) 8 (2.0) 8 (4.1) Nonalcoholic fatty liver disease 43 (10.9) 11 (2.8) 5 (2.5) Drug-induced liver injury 7 (1.8) 11 (2.8) 2 (1.0) Autoimmune liver disease 65 (16.5) 27 (6.8) 1 (0.5) Inherited metabolic liver disease 15 (3.8) 0 (0.0) 1 (0.5) Other or unknown 38 (9.6) 12 (3.0) 0 (0.0) Duration of diagnosis of liver disease [n (%)] 0.001 Less than 1 year ago 14 (3.5) 42 (10.6) 41 (20.8) 1–5 years ago 138 (34.9) 71 (17.8) 71 (36.0) 5–10 years ago 91 (23.1) 50 (12.6) 36 (18.3) More than 10 years ago 152 (38.5) 235 (59.0) 49 (24.9) Duration of follow-up at liver clinic [n (%)] 0.001 Less than 1 year 33 (8.4) 81 (20.4) 71 (36.0) 1–2 years 87 (22.1) 60 (15.1) 38 (19.3) 2–5 years 115 (29.2) 85 (21.3) 58 (29.5) 5–10 years 89 (22.6) 73 (18.3) 16 (8.1) More than 10 years 70 (17.7) 99 (24.9) 14 (7.1) SD standard deviation 2850 Dig Dis Sci (2016) 61:2847–2856 123
  • 5. biggest difference in responses across the three sites with mean scores of 4.7, 3.9, and 2.5 in the USA, Beijing, and Hebei, respectively. The mean overall satisfaction score (maximum = 85) for all 17 items was significantly higher for US patients than for Beijing patients, which in turn was higher than in Hebei patients (78.2 vs. 66.5 vs. 60.3, p 0.001). Factors Associated with Patient Satisfaction with Liver Disease Care When responses from all three sites were combined, there was a positive correlation between liver disease knowledge score and satisfaction score (r = 0.27, p 0.001). General linear model showed that study site, patients’ assessment of their knowledge, and liver disease knowledge score were significant predictors of patient satisfaction with liver dis- ease care. When responses were analyzed by site, age was the only significant predictor of patient satisfaction with liver disease care in US patients, while patients’ assessment of their knowledge and liver disease knowledge score were significant predictors in Beijing patients. Age, patients’ assessment of their knowledge, and liver disease knowl- edge score were significant predictors in Hebei patients (Table 4). Discussion In this survey of almost 1000 patients with chronic liver disease, patient knowledge of their liver disease and sat- isfaction with liver care in the USA were better than in urban China, which in turn was better than in rural China. As far as we know, our study is the first to comprehensively assess patient satisfaction with liver disease care and to compare patient satisfaction in the USA and China. Our patient satisfaction questions, adapted from Jean-Pierre’s Patient Satisfaction with Cancer Care, were shown to be highly reliable and internally consistent. Multiple factors contribute to patient satisfaction, including patient factors (knowledge about their disease, expectations, education), provider factors (attitude, time spent educating patients and explaining diagnosis and care plans, knowledge and experience), and system factors (ease of scheduling clinic appointments, time available for each clinic visit, availability of ancillary staff such as nurses to facilitate care and communications, clinic environment) [22]. Understanding which aspect of care patients are least satisfied with and the factors associated with patient dis- satisfaction can provide insights into interventions that will improve patient satisfaction and ultimately patient outcomes. Table 2 Patient knowledge about their liver disease and medical decision-making preference by study site USA Beijing Hebei p value Patients’ assessment of their knowledge [n (%)] 0.001 Nothing 14 (3.5) 11 (2.8) 23 (11.7) A little bit 105 (26.6) 183 (46.0) 112 (57.1) A fair amount 191 (48.4) 173 (43.5) 52 (26.5) A lot 85 (21.5) 31 (7.8) 9 (4.6) Liver disease knowledge score, mean (SD) Overall 4.1 (0.9) 3.6 1.1) 3.0 (1.4) 0.001 Hepatitis B 3.8 (1.1) 3.6 (1.1) 3.0 (1.3) 0.001 Hepatitis C 4.3 (0.9) 3.5 (1.3) 3.0 (1.4) 0.001 Alcoholic liver disease 4.2 (0.7) 3.6 (0.9) 3.9 (1.1) 0.26 Nonalcoholic fatty liver disease 3.8 (1.0) 3.4 (0.9) 3.6 (1.5) 0.51 Drug-induced liver injury 4.1 (0.7) 3.0 (1.0) 1.5 (2.1) 0.01 Autoimmune liver disease 4.0 (1.0) 3.9 (0.8) 2.0 (0.0) 0.09 Inherited metabolic liver disease 4.3 (0.6) NA 0.0 (0.0) 0.001 Medical decision-making [n (%)] 0.001 By the doctor entirely 33 (8.4) 151 (37.9) 89 (45.2) By the doctor, considering my preferences 43 (10.9) 146 (36.7) 78 (39.6) By me and the doctor together 282 (71.8) 89 (22.4) 23 (11.7) By me, considering input from the doctor 34 (8.7) 11 (2.8) 6 (3.0) By me entirely 1 (0.3) 1 (0.3) 1 (0.5) SD standard deviation, NA not applicable Dig Dis Sci (2016) 61:2847–2856 2851 123
  • 6. Regarding patient factors, our study showed that patient knowledge correlated with patient satisfaction. Self- assessment of liver disease knowledge showed that US patients were more likely to report greater knowledge than Chinese patients. While this difference may be related to cultural differences with Chinese culture placing a greater emphasis on humility and the US culture on self-confi- dence, the self-assessment by patients correlated with their Fig. 1 Patient responses to the 17 items that measured satisfaction with liver disease care at the three study sites: a the USA, n = 395; b Beijing, n = 398; c Hebei, n = 197 2852 Dig Dis Sci (2016) 61:2847–2856 123
  • 7. Table 3 Average scores of responses to patient satisfaction questions by study site USA Beijing Hebei (a) I felt that my health concerns were understood 4.7 3.9 3.8 (b) I felt that I was treated with courtesy and respect 4.8 4.3 4.0 (c) I felt included in decisions about my health 4.7 3.9 2.5 (d) I was told how to take care of my liver disease 4.5 4.3 3.9 (e) I felt encouraged to talk about my personal health concerns 4.6 3.8 3.4 (f) I felt I had enough time with my doctor 4.5 3.7 3.6 (g) My questions were answered to my satisfaction 4.6 4.2 3.8 (h) Making an appointment was easy 4.6 3.9 4.4 (i) I knew what the next step in the care of my liver disease would be 4.3 3.8 2.8 (j) I feel confident in how I deal with the liver team 4.5 3.6 3.6 (k) I was able to get the advice I needed about my health issues 4.6 4.0 3.7 (l) I knew who to contact when I had a question 4.5 3.9 3.8 (m) I received all the services I needed 4.6 3.9 3.3 (n) I am satisfied with the care I received 4.7 4.2 3.6 (o) Members of the liver team (doctors, nurses, physician assistants, etc.) seemed to communicate well about my care 4.6 3.8 2.8 (p) I received high-quality care from my liver team 4.7 3.7 3.5 (q) I will recommend my liver doctor to friends and family 4.7 3.6 3.8 Mean overall satisfaction scorea,b,c,d 78.2 66.5 60.3 Comparisons of mean overall satisfaction score a among three sites, b between USA and Beijing, c between USA and Hebei, d between Beijing and Hebei, all p 0.001 We removed the outlier item ‘‘My regular doctor (primary care doctor or family doctor) was informed about the results of the tests I got for my liver disease’’ Table 4 Factors associated with patient satisfaction with liver disease care Cohort Variable Coefficient 95 % CI p value Three cohorts combined Site (vs. Hebei) USA 14.3 11.2 to 17.4 0.001 Beijing 5.3 2.7 to 7.9 0.001 Patients’ assessment of their knowledge (a fair amount and a lot vs. nothing and a little bit) 3.4 1.5 to 5.3 0.001 Liver disease knowledge scorea 1.5 0.7 to 2.2 0.001 USA Ageb 0.2 0.1 to 0.3 0.002 Beijing Patients’ assessment of their knowledge (a fair amount and a lot vs. nothing and a little bit) 4.8 1.9 to 7.7 0.001 Liver disease knowledge score 1.4 0.2 to 2.6 0.019 Hebei Age -0.3 -0.4 to -0.1 0.003 Patients’ assessment of their knowledge (a fair amount and a lot vs. nothing and a little bit) 5.9 1.5 to 10.2 0.009 Liver disease knowledge score 2.0 0.4 to 3.5 0.012 CI confidence Interval a Coefficient for liver disease knowledge score is difference of patient satisfaction score by 1 liver disease knowledge score b Coefficient for age is difference of patient satisfaction score by 1 year Dig Dis Sci (2016) 61:2847–2856 2853 123
  • 8. knowledge score. Higher knowledge scores have been reported to be associated with greater satisfaction with care [23–25]. Our data suggest that improving patients’ under- standing of their disease could improve their satisfaction with care. Increased knowledge about one’s disease might help patients understand what symptoms and outcomes to expect, what treatment options are available, and how effective they are. Setting realistic expectations might decrease frustrations and disappointment particularly when the outcomes are unfavorable. In our study, age was a predictor of patient satisfaction in the USA and Hebei. Most previous studies found that older age was signifi- cantly associated with higher satisfaction scores [26, 27]. We found the same trend in US patients, but the opposite trend in Hebei patients. The reason for the difference in Hebei might be the older patients there had lower education level and poorer communication with physicians. We found that sex and education were not predictors of patient satisfaction. A meta-analysis also found that the effects of gender and education on patient satisfaction were mixed [28]. We had hypothesized that patients with different liver diseases might differ in their satisfaction with care, but this was not the case when results were analyzed by site and combined. Regarding provider factors, our study showed all three sites scored well on the item ‘‘I felt that I was treated with courtesy and respect.’’ Treating patients with respect and empathy is a fundamental component of medical educa- tion, but with increasing technological advances in medi- cine, time spent on training physicians on humanities and art of medicine may be eroded. Traditionally, the practice of medicine in China tended to be paternalistic. It is reas- suring to see that a high percent of patients at the two Chinese sites felt they were treated with courtesy and respect. Our study indicates that patient dissatisfaction arose from inadequate or poor communications between physician and patient. The item ‘‘I knew what the next step in the care of my liver disease would be’’ had a lower score for all three sites. Having patients understand the next step in their care is important, so they can adhere to the care plan. Communicating to patients using terms that they can understand and repeating the message in different formats are important, particularly for patients with less education and/or limited knowledge about their disease. The item ‘‘I felt included in decisions about my health’’ showed the biggest difference in responses across the three sites. Although many Chinese patients preferred their doctors to make decisions on their care, many desired to be involved in the decision as evident by the fact that 36.7 % of Beijing and 39.6 % of Hebei patients would like their physicians to consider their preferences in making decisions. Our find- ings indicate that physicians at all three sites should work on improving communication of care plans with patients. Regarding system factors, there are major differences in how health care is delivered and how clinics are run between the USA and China. Most Chinese do not have family doctors or primary care physicians, so they tend to go to specialty clinics for all their health problems. The lack of systematic referral systems and the uneven distri- bution of medical resources in China lead to overcrowding of patients in large hospitals in China [29]. Furthermore, most clinics in China do not have appointment systems, and patients show up similar to walk-in clinics in the USA. The current healthcare system in China creates multiple problems which cause patient dissatisfaction: the clinics are crowded, the physicians cannot plan ahead, and each patient has limited (often 5 min or less) time with the physician after waiting in line for hours. In recent years, China has implemented reforms to the healthcare system. In 2009, all public tertiary hospitals supported by the Ministry of Health began to use Web-based appointment systems, but only a small percent of patients actually use the system with most patients still choosing walk-in reg- istration, and clinics in tertiary hospitals continue to see patients who do not have appointments [30]. The differ- ences in healthcare delivery systems in the USA and China must be considered when comparing patient satisfaction in the two countries. Our study found lower scores on the item ‘‘I felt I had enough time with my doctor’’ at the Chinese sites. Time constraint may also account for lower scores on several related items such as ‘‘I felt encouraged to talk about my personal health concerns’’ at the Chinese sites. In addition to training physicians to maximize efficiency during the short time they have with their patients, other solutions such as use of physician extenders and electronic communications might supplement the deficiency in face time with physicians. While mid-level providers and nurses play an important role in the management of patients with chronic liver diseases and electronic health records with patient portals are universal in the USA, these services are rare in urban China and nonexistent in rural China. We found a striking difference in patient preference for medical decision-making between patients in the USA and those in China with the majority of US patients preferring collaborative decision-making and the majority of Chinese patients preferring decisions made by the doctor. Consid- ering that previous studies have postulated that despite cultural differences all patients in the USA and China preferred a collaborative decision-making style [31], it is interesting that our study challenges this concept and invokes more insight into cultural relativity. Some studies have shown that patients who are more knowledgeable about their disease are more likely to be involved in deciding how they should be managed [32]. We also found a correlation between higher knowledge score and prefer- ence for collaborative decision-making, emphasizing the 2854 Dig Dis Sci (2016) 61:2847–2856 123
  • 9. importance of educating patients so they can actively participate in making decisions about their care. Our study provided a comparison of patient knowl- edge, preference for medical decision-making, and satis- faction with liver care, not only between patients in the USA and China, but also between urban and rural China. Our study site in Hebei is a rural Manchu Autonomous Region, and the majority of the residents are Manchus with limited education. We found that patient knowledge score and satisfaction scores in Hebei were significantly lower than in Beijing, but preference for medical deci- sion-making was similar. These differences were not related to differences in patient ethnicity as all three measures were similar between Han and non-Han Chinese in Hebei and more likely a reflection of the gap in edu- cation, economy, and health infrastructure between rural and urban China [33]. There were several limitations to this study. First, only one liver clinic was included in each site, and the study cohorts may not be fully representative of US and urban and rural Chinese patients. Second, we were only able to ask very general knowledge questions since we used the same questionnaire for all liver diseases. Finally, some patients completed the survey on their own, while others had the survey administered by researchers; however, researchers were trained to read the survey verbatim and we did not find any systematic differences in responses between the two administration methods. In summary, liver disease knowledge and patient satis- faction were greatest in the USA, followed by Beijing and then Hebei patients. Improving patients’ understanding of their disease would improve their satisfaction with care and their engagement in medical decision-making. Our findings can be used to design interventions to improve patient satisfaction of liver disease care and ultimately patient outcomes. Acknowledgments Ming Yang was supported by US National Institutes of Health Research Training Grant 3R25TW009345 awar- ded to the Northern Pacific Global Health Fellows Program by the Fogarty International Center and Institutes. Fanny H. Du was sup- ported by the University of Michigan Medical School Faculty-Led Global Reach Program for medical students. Angela Xie, Cassandra Rodd, and Shanna Cheng are undergraduate students supported by the Alice Lohrman Andrews Research Professorship (to Anna S. Lok). Lai Wei and Anna S. Lok are supported by grants from the University of Michigan Health System and Peking University Health Science Center Joint Institute for Clinical and Translational Research. Compliance with ethical standards Conflict of interest Ming Yang, Elizabeth Wu, Huiying Rao, Fanny H. Du, Angela Xie, Shanna Cheng, Cassandra Rodd, Andy Lin, Lai Wei, and Anna S. Lok declare that they have no conflict of interest related to this work. References 1. Stewart BW, Wild C. 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