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Hepatitis C virus-infected patients (41%)
report communication problems with physicians
Hepatology
Volume 39, Issue 4, March 2004
http://www.natap.org/2004/HCV/032904_06.htm
Susan Zickmund 1 *, Stephen L. Hillis 2, Mitchell J. Barnett 2,
Laura Ippolito 3, Douglas R. LaBrecque 31Department of Medicine,
University of Pittsburgh College of Medicine, Pittsburgh,
PA2Program for Interdisciplinary Research in Health Care
Organization, Iowa City VA Medical Center, Iowa City,
IA3Department of Internal Medicine, The University of Iowa
College of Medicine, Iowa City, IA
Funded by:
Cardiovascular Institutional Research Fellowship funded by the
National Institutes of Health; Grant Number: HL07121
Central Investment Fund for Research Enhancement, 2001,
University of Iowa
Patient surveys found these barriers to communications with
their doctors:
"...The current study demonstrated that more than one-third of
patients diagnosed with HCV infection perceived interaction
difficulties with physicians. Nearly one-half of the patients
with conflict reported being misdiagnosed or inadequately
treated and questioned the competence of their physicians. In
addition, patients perceived negative attitudes and a feeling of
disrespect from their physicians. This led to a feeling of being
stigmatized, mistreated, or abandoned in more than one-fifth of
those reporting such difficult interactions....."
1- The poor communication skills of physicians were cited most
commonly—
(69% of the conflict group or 28% of the total study population;
patients may be included in more than one category). The most
frequently mentioned causes were the perception of being treated
unkindly, being rushed, not being listened to, or being
misunderstood. This was associated in all cases with a feeling
of not liking and/or of not being liked by the physician (e.g.,
This doctor kind of stuffed me [like I was] dirt. It really
upset me and I asked for a second opinion.).
2- Another important concern raised by 74 individuals (56% of
the conflict group or 23% of the total study population) was the
perceived medical competence of the physician. Patients
expressed beliefs that that physicians were not able to diagnose
and/or treat hepatitis C
3- Fifty-one patients (39% of patients in the conflict group and
16% of patients in the total study population) believed that
they had been misdiagnosed or that their physician had not
effectively managed their care. These responses consistently
included a sense of abandonment by their physicians. Patients
complained about not being referred to another physician or of
feeling dismissed because their physician considered HCV
infection an irrelevant condition. Others explained that they
had been told that their disease was too advanced, that they
were sure to die and therefore were not candidates for therapy,
or that treatment options had been tried once and therefore
exhausted.
4- Twenty-nine patients (22% of patients in the conflict group
and 9% of patients in the total study population) described
being stigmatized by their health care providers due to their
HCV infection. The most commonly cited negative stereotype was
that of being considered sexually promiscuous or of being a drug
abuser.
5- Others remarked that physical complaints were dismissed as
psychological problems.
6- The majority of the patients experiencing conflict (n = 62)
reported communication difficulties when interacting with
specialists, primarily gastroenterologists. This group also
included five physicians specialized in infectious diseases, who
were either primarily involved in treating HCV infection or
managing it as a comorbidity. Twenty-two participants had
experienced conflicts with primary care providers. One-fifth of
the conflict patients (n = 23) expressed dissatisfaction with
physicians in general.
7- treatment outcome (nonresponse) was significantly correlated
with perceived physician conflict
8- Although we only investigated patients' views, previous
studies indicated that physicians can feel challenged by the
complex medical and social issues involved in treating HCV-infected
patients.
ARTICLE
We examined the prevalence and nature of perceived problems in
the interaction between physicians and patients diagnosed with
hepatitis C virus (HCV) infection. This cross-sectional study
included 322 outpatients diagnosed with chronic HCV infection
and treated at a tertiary referral hospital's hepatology clinic.
Patients were asked to provide demographic information and to
complete a semistructured interview, the Sickness Impact Profile
(SIP) and Hospital Anxiety Depression (HAD) scale. A team of two
blinded coders analyzed the interviews.
A total of 131 (41%) study patients reported communication
difficulties with physicians involved in their care. The main
difficulties were the poor communication skills of physicians
(91 [28%]), physician incompetence regarding the diagnosis and
treatment of HCV infection (74 [23%]), feelings of being
misdiagnosed, misled, or abandoned (51 [16%]), or being
stigmatized by their physician (29 [9%]). Patients were twice as
likely to report difficulties with subspecialists as compared
with generalists.
Nonresponse with antiviral therapy correlated with perceived
physician conflict even after adjusting for treatment in
relation to the time of interview, whereas previous or ongoing
substance abuse and mode of acquisition did not.
In a multivariate model, patients' psychosocial problems were
the best predictors of communication difficulties.
In conclusion, a substantial number of patients with HCV
infection report difficulties when interacting with physicians,
which may be due to coexisting emotional or social problems.
However, perceived stigmatization by physicians and a sense of
abandonment reflect the need for further educational efforts.
These should target both specialists and primary care providers
to inform them about the psychosocial challenges facing these
patients.
Article Text
Communication between patients and providers can have a major
impact on the perceived and actual quality of care. Interactions
play an important role in patients' overall satisfaction, as
well as compliance with prescribed treatment, which can alter
health outcomes. Although patients and providers unanimously
accept the importance of good communication, studies demonstrate
problems in such interactions. Physicians experience challenges
in up to 15% of their patient encounters. Patient
characteristics have been identified as the cause for
communication difficulties, leading to profiles of difficult
patients. Commonly cited characteristics include substance
abuse, emotional problems, somatization, and vague health
problems. Age, lower education, and female sex have also been
correlated with difficult patient behavior.
Patients with hepatitis C virus (HCV) infection meet many of the
traits of difficult patients. Substance abuse remains the most
important mode of HCV acquisition due to contaminated needles or
syringes. This common cause may result in prejudices and
stigmatization that even penetrate into the medical environment.
Moreover, HCV- infected individuals have a high prevalence of
emotional problems, such as anxiety or depression. Treatment
protocols for HCV infection have response rates of up to 60%.
However, the treatment regimen is long and cumbersome, requiring
48 weeks of combined parenteral and oral drug administration in
most cases. A decrease in the cumulative drug dosages applied
during therapy lowers treatment success rates, highlighting the
importance of adherence to the prescribed medical regimen.
Despite the importance of good patient-provider interactions in
patient satisfaction and compliance, no systematic study has
examined perceived communication problems for HCV-infected
individuals in the health care environment. Therefore, we
conducted a cross-sectional study to determine the prevalence
and nature of communication problems and to identify potential
predictors for such difficulties.
Patients and Methods
Patients.
The schedules of all hepatologists practicing at a large
midwestern teaching hospital were reviewed daily for patients
meeting the study inclusion criteria. Patients younger than 18
years of age, prisoners, patients unable to communicate verbally
or to provide informed consent, and patients with a Child-Pugh
score of 7 and above were excluded from the study. Patients with
a confirmed diagnosis of HCV infection were invited to
participate on the day of their clinic visit. Participants were
asked to undergo an extensive interview before their scheduled
appointments that addressed psychosocial and health-oriented
questions and to complete health status and psychosocial survey
measures. The patients also provided demographic information,
including their age, sex, marital status, ethnic identity,
education, employment status before and after diagnosis, and the
population of their hometown. All patients were given informed
consent documents. The protocol was approved by the insitution's
ethics review board and the study protocol conformed with
ethical guidelines of the Declaration of Helsinki.
Structured Interview.
Before their clinic appointment, consenting patients
participated in a semistructured interview that was administered
by a trained assistant in an environment that assured privacy.
The interview comprised 24 questions that related to the
psychosocial dimensions of illness and attitudes
toward/interactions with physicians, with predefined follow-up
responses, ranging in length from 30 minutes to 2 hours, with a
mean time of 45 minutes. If patients mentioned present or past
communication problems with physicians, they were asked to
elaborate on the type, location, and potential cause of the
conflict. Each interview was recorded with a hand-held tape
recorder and transcribed verbatim. To ensure accuracy, randomly
chosen transcriptions were compared with the original audiotape.
Clinical and Demographic Data.
Data specific to the date of the interview were abstracted from
the electronic medical record system by a research assistant
with a medical degree. Abstracted data included insurance
status, psychiatric diagnoses, comorbidities, total bilirubin
level, albumin level, alanine aminotransferase activity,
prothrombin time, Child-Pugh score, dates of treatment for HCV
infection (before, during, after interview, or patient is
naive), response to treatment (durable responder,
nonresponder/disease recurrence, naive), substance abuse, mode
of transmission (drug use; blood transfusion/needle stick,
tattoo, unknown), length of time treated in the study's
hepatology clinic, time initially diagnosed with HCV infection,
and compliance.
Coding.
The frequency and types of communication conflicts were
determined by using a quasi-statistical qualitative methodology.
Twenty trained interviewers, each with more than 1 year of
experience in interviewing, read 50 of 150 randomly selected
interviews and ranked the top 10 themes in terms of overall
frequency and importance. The primary investigator and two
trained coders then synthesized this list to create the master
codebook, which included the central themes related to physician
interactions, quality of life, and interpersonal relationships.
Using this codebook, each transcript was then coded by two
independent coders, one who had undergone a minimum of 3 weeks
of formal training and a master coder with at least 1 year of
experience. The initial coding sheets of each coder were
converted into a spreadsheet to determine a final kappa score
that assessed the agreement between the evaluators. The coders
then met and processed the codes for each case until 100%
agreement was achieved between them. From this, a master code
databank was developed, which was then used for statistical
calculations.
The codebook included codes for patient-physician interactions,
particularly for situations when the patient expressed perceived
communication difficulties (coded as conflict) and for
situations when those conflicts did not exist (coded as no
conflict). The presence of communication difficulties was
operationally defined as a negative judgment about the
interaction with a physician charged with treating the patient's
HCV infection at any point in time. Consistent with theories of
qualitative coding, examples of conflict would be counted,
regardless of where they occurred in the course of the
interview.[23] As we focused on physician-patient interaction,
the following descriptions were excluded from the conflict code:
communication problems with nurses, pharmacists, or nonphysician
health staff; scheduling difficulties unrelated to the
physician; financial problems unrelated to the physician; and
conflicts with physicians related to any other disease (HCV).
To effectively address a negative, the absence of communication
difficulties (the no conflict code) was operationally defined as
answering the physician interaction question 16 (see Appendix)
with affirmative or neutral statements about physicians (e.g.,
He is wonderful, She was fine, I have never had a problem) and
anwering with no mention of communication difficulties with
treating physicians throughout the remainder of the interview.
Questionnaires.
After the interview, the patients were asked to complete the
Hospital Anxiety Depression scale (HAD) and the Sickness Impact
Profile (SIP). The HAD is a validated screening tool for the
assessment of depressive and anxious emotional disturbances. The
SIP is a well-validated health status survey, containing
categories for social interaction, emotional balance, alertness,
body care, ambulation, physical capacity to communicate,
movement, and a subtotal for physiologic status.
Physician Training.
To identify the professional training of physicians implicated,
patients were asked to elaborate on situations involving
difficulties with their physicians and to give specific details
whenever possible. When no identifying details were given (This
one doctor in Arizona nearly killed me), the interview was
recorded as physician unknown. When identifying information was
given (e.g.: When I spoke to Dr. __, The doctor who did my first
biopsy The doctor I saw in [stated city] about my hep C), that
information was traced to the chart record to determine if a
single physician could be isolated. If the name of a specific
physician was still unclear, the case was coded as physician
unknown. If a specific physician could be identified, then the
electronic record system was used to determine the physician's
specialty training.
Statistical Evaluation.
All statistical analyses were performed using SAS software,
version 8.1 (SAS, Cary, NC). To assess bivariate associations
between communication problems (yes/no) and other predictors,
the chi-square or Fisher's exact test was performed for
categorical predictors and the Wilcoxon rank-sum test was
performed for continuous and ordinal variables.
In constructing the model, forward stepwise logistic regression
with physician conflict as the outcome was used to determine a
best set of multivariate predictors. We used
principal-components analysis to reduce the number of candidate
predictors for the stepwise procedure. First, we grouped the
predictor variables into several domains, with variables within
a domain representing the same phenomenon, such as physical
functioning. Second, we transformed categorical variables into
either binary or three-level (-1, 0, 1; a higher value indicates
a worse condition) ordinal variables. Third, we used the first
principal component computed from the variables in each domain
as a clinical index to summarize the domain variables. Each
principal component summary measure is a positively weighted sum
of individual variables that explains the most variance in the
individual domain variables. To identify a best set of
independent predictors of perceived communication problems
between physicians and HCV-infected patients, we performed a
stepwise logistic regression, based on summary measures for each
of the seven domains. P < .05 was statistically significant.
Results
Patient Characteristics.
Between October 1998 and May 2002, 403 patients diagnosed with
HCV infection were screened for study enrollment. An additional
75 patients refused to participate, mostly due to a lack of time
before their scheduled clinic visit. This number excludes
patients who initially refused but who later agreed to
participate. Fifty patients (12%) did not complete the
interview, again largely due to time, and were excluded from
analysis, leaving a total of 353 patients. To avoid skewed
results due to persons with advanced disease, we excluded 31
subjects with Child-Pugh scores of 7 or above (26 patients with
Child B and 5 patients with Child C) from the final analysis.
These four groups - the study sample (n = 322), subjects who
refused to participate (n = 75), subjects who were excluded (n =
81), and the overall outpatient population evaluated and treated
for HCV infection between October 1998 and May 2002 (n = 1,602)
- were comparable with respect to sex (37%-40% women) and age
(44.7-48.2 years).
Reliability of Qualitative Data.
To assess the reliability of data obtained from the qualitative
analysis of patient interviews, we determined the initial
concordance between coders before the 100% agreement process.
The mean kappa value for all codes was 0.78, and for the ordinal
code of doctor conflict, the mean kappa value was 0.76. This
score demonstrates what Landis and Koch[26] label as high
substantial agreement between coders (substantial =
0.60.8-0.81.0, near perfect = 0.81-1).
Prevalence and Nature of Communication Problems.
Using the previously defined criteria, we identified 131
patients with known HCV infection who reported communication
problems with physicians involved in their care. No single
physician was identified more than four times. Sixteen of the
total cases occurred in various clinics at the teaching hospital
where the study was conducted and nine occurred in the
hepatology clinic across four hepatologists.
The interviews provided a depiction of the perceived barriers
and problems patients faced when interacting with physicians.
The poor communication skills of physicians were cited most
commonly, with 91 responses being noted out of the total 131
(69% of the conflict group or 28% of the total study population;
patients may be included in more than one category). The most
frequently mentioned causes were the perception of being treated
unkindly, being rushed, not being listened to, or being
misunderstood. This was associated in all cases with a feeling
of not liking and/or of not being liked by the physician (e.g.,
This doctor kind of stuffed me [like I was] dirt. It really
upset me and I asked for a second opinion.).
Another important concern raised by 74 individuals (56% of the
conflict group or 23% of the total study population) was the
perceived medical competence of the physician. Patients
expressed beliefs that that physicians were not able to diagnose
and/or treat hepatitis C:
The doctor in ____ (city) did not know that much about the
illness so he could not answer any of my questions. The first
diagnosis was hepatitis A and he wouldn't even come back into
the room with me. But when he got the results back he called me
at home, because I was quarantined to my apartment for a week,
and told me to come back and he said he felt that it was
hepatitis C cause it wasn't B. And he couldn't answer any of my
questions.
Fifty-one patients (39% of patients in the conflict group and
16% of patients in the total study population) believed that
they had been misdiagnosed or that their physician had not
effectively managed their care. These responses consistently
included a sense of abandonment by their physicians. Patients
complained about not being referred to another physician or of
feeling dismissed because their physician considered HCV
infection an irrelevant condition. Others explained that they
had been told that their disease was too advanced, that they
were sure to die and therefore were not candidates for therapy,
or that treatment options had been tried once and therefore
exhausted.I went to a doctor in ___ (city) who told me that I
was a waste of his time. I was not a good candidate for
interferon therapy. He told me in plain words that the
interferon would make him look bad and would make the drug
company look bad.
Twenty-nine patients (22% of patients in the conflict group and
9% of patients in the total study population) described being
stigmatized by their health care providers due to their HCV
infection. The most commonly cited negative stereotype was that
of being considered sexually promiscuous or of being a drug
abuser. One young man stated:
[The physician] went so far as to ask me if I had male sexual
partners and stuff and that was pretty humiliating. I told her
like four times, no I don't do men.
Another noted:
I have been told by physicians in the last two years that I have
an active bad habit when I haven't taken an illegal substance
since I was in school twenty years ago. I have been told that I
must be an addict.
Others remarked that physical complaints were dismissed as
psychological problems.
Communication Problems and Physician Training.
The majority of the patients experiencing conflict (n = 62)
reported communication difficulties when interacting with
specialists, primarily gastroenterologists. This group also
included five physicians specialized in infectious diseases, who
were either primarily involved in treating HCV infection or
managing it as a comorbidity. Twenty-two participants had
experienced conflicts with primary care providers. One-fifth of
the conflict patients (n = 23) expressed dissatisfaction with
physicians in general. In the remaining 24 cases, the training
of the physician could not be determined.
Factors Predicting Communication Problems: Bivariate
Associations.
Bivariate associations with communication problems are
displayed. First, we studied the demographic variables.
Caucasians were significantly more likely than other ethnic
groups to report difficulties in interactions with physicians,
whereas other variables were not associated with perceived
conflicts. Next, we examined psychiatric diagnoses,
comorbidities, substance abuse, mode of acquisition and found no
significant correlations. Similarly, biochemical markers of
liver injury or compliance variables were not associated with
patient perceived physician conflict. In addition, treatment in
relation to the time of interview, years of diagnosis with HCV
infection, and years treated at the hepatology clinic did not
correlate with communication problems. It is noteworthy that
treatment outcome (nonresponse) was significantly correlated
with perceived physician conflict. As patients in this
cross-sectional study were recruited at various points in
relation to treatment, we performed an adjusted analysis and
found that the association did not significantly differ (P =
.071, Breslow-Day test for homogeneity of odds ratios) with
respect to time of interview (before, during, and after
treatment).
The analysis of survey data demonstrated a relation between
psychosocial and reported communication problems with
physicians. Although patients who perceived conflict expressed
significantly more physical symptoms on the SIP ambulation
scale, the physical subscore of the SIP did not differ between
the groups. A higher degree of emotional problems were reflected
by significant differences in the SIP alertness scale, as well
as by anxiety and depression as measured by the HAD.
The qualitative results obtained by coding patient interviews
showed a similar pattern. Individuals perceiving conflicts were
significantly more likely to display strong emotional reactions,
such as crying, stating that they could not cope with the
difficulties in their lives. They perceived a significantly
lower quality of life, felt out of control, and had a
pessimistic outlook on their lives. They also expressed
significantly more themes consistent with anxiety or depression.
Difficulties in interactions with physicians were also
significantly associated with interpersonal problems with family
and coworkers. Patients described themselves as being more
socially isolated and more likely to experience stigmatization
from others around them. Twenty-nine patients felt stigmatized
within the medical community. Compared with the remainder of the
group, these patients were younger, had more psychiatric
diagnoses, expressed more depressive feelings, a lack of
control, and ability to cope, and described themselves as having
worsened relations with family and coworkers.
Factors Predicting Communication Problems: Stepwise Logistic
Regression/Statistical Evaluation.
In constructing a model, the emotional domain was entered as the
first step in the stepwise procedure (P < .0001). As a group,
the remaining domains did not significantly improve the model.
The parameter estimate for the emotional domain (.2830) showed a
positive correlation between perceived conflict and increasing
emotional problems. The c statistic value,equivalent to the
receiver operating characteristic area under the curve for the
model, was 0.634, showing that this model had 63.4% accuracy in
discriminating between conflict and no conflict patients (c =
.5, no discriminant ability; c = 1, perfect discrimination).
Because the social support domain was the only other domain to
significantly correlate with the likelihood of having
communication problems (P = .0002), we also examined the model
with only the social support domain. The result (c = .626)
showed similar but slightly lower discriminant ability. This
demonstrated that both the emotional and the social support
domains were the best predictors of perceived conflict, whereas
other domains did not significantly affect the outcome.
Discussion
The current study demonstrated that more than one-third of
patients diagnosed with HCV infection perceived interaction
difficulties with physicians. Nearly one-half of the patients
with conflict reported being misdiagnosed or inadequately
treated and questioned the competence of their physicians. In
addition, patients perceived negative attitudes and a feeling of
disrespect from their physicians. This led to a feeling of being
stigmatized, mistreated, or abandoned in more than one-fifth of
those reporting such difficult interactions.
Our study integrated quantitative and qualitative methods, thus
enabling us to identify potential thematic sources for the
patients' reported physician conflicts. We have previously shown
a significant correlation between the data obtained using
surveys and information abstracted by coding responses to a
structured interview, thus cross-validating the different
approaches. Consistent with the literature on doctor-patient
interactions, many patients were dissatisfied with inadequate
explanations, insensitive communication behaviors, and poor
listening. In addition, approximately 23% of the entire study
population questioned the competence of their physicians, a
number that stands in stark contrast to generally high rates of
satisfaction with medical care in the inpatient or outpatient
setting.
We identified several potential predictors for communication
problems in this group of HCV-infected individuals and tested
their relative importance using statistical modeling. Unlike
previous studies, we found no significant associations with sex,
age, or socioeconomic status, as measured by education and
insurance status. In contrast to previous studies, our data
suggest that Caucasians were more likely to report conflicts
than were other ethnic groups. However, the small number of
ethnic minorities within the patient population does not allow
firm conclusions. It is noteworthy that mode of acquisition and
current substance or alcohol abuse were not significant
predictors for patient-physician conflict, a finding that
differs from previous reports on difficult patients. This lack
of association points to other factors as a cause for
communication problems in the health care environment. We
observed that emotional problems were more prevalent among
individuals reporting conflicts with their physicians, although
documented psychiatric diagnoses were not. In addition, we found
an association between communication problems and lower levels
of social support, raising the question of whether difficulties
in the health care environment may be reflected in more general
problems interacting with others in the private and/or
professional sphere. Consistent with this assumption, we found
that previous failure to respond to antiviral therapy was
significantly associated with communication problems. This
association also held when we followed patients who had not yet
finished or even started their treatment. Although additional,
prospective studies are needed to determine whether
communication difficulties are a determinant of treatment
outcome, these results lead us to question whether conflict
between patients and their physicians may adversely affect
medical adherence.
Based on these bivariate associations, we performed a stepwise
logistic regression to determine the most important independent
predictors for communication problems. The final model
identified emotional and social problems as the strongest
predictors of self-reported conflicts with physicians.
The study also reported the difficulties patients perceived with
both generalists and specialists. Although we only investigated
patients' views, previous studies indicated that physicians can
feel challenged by the complex medical and social issues
involved in treating HCV-infected patients. It is possible that
this may have contributed to feelings of abandonment,
communication difficulties, or to questions about competence as
expressed by patients in the current study. The setting of the
study, a specialty clinic in a tertiary referral center, does
not allow representative comparisons between specialists and
generalists. However, the finding that patients reported
problems with physicians regardless of training indicates the
possible need for educational efforts to raise awareness about
the unique needs of this patient group.
A critical finding of the current study is the high prevalence
of perceived stigmatization by providers as mentioned by
one-fifth of the patients. Similar experiences have been
described for patients with human immunodeficiency virus
infection, mental diseases, or substance abuse. This may, in
part, reflect the perception that infections caused by HCV and
human immunodeficiency virus are a consequence of poor lifestyle
choices, most notably substance abuse or sexual promiscuity.
Such views may not only lead to patient dissatisfaction, but may
affect medical decision-making in the health care environment.
Importantly, subjective experiences of stigmatization were not
associated with a history of substance abuse, highlighting the
potential role of prejudices on encounters within and outside of
the medical environment.
The current cross-sectional study focused on perceived
communication problems, which were identified after interviewing
affected individuals about their experiences with their health
care. By definition, the interview relied on recall. Therefore,
no detailed information about the frequency of difficult
interactions could be obtained. Although the combination of
qualitative information and clinical as well as survey data
provided unique insight into this important topic, several
questions remain. How do providers assess their interactions
with patients who report communication problems? Can we identify
similarly perceived communication difficulties in patients with
chronic diseases not associated with psychosocial problems? The
study was conducted in a specialty clinic in a tertiary care
center, leaving it unclear whether the findings can be applied
to patients treated at other centers. However, it is important
that age, sex distribution, and identified risk factors for HCV
infection were similar to those reported in many of the seminal
studies on this disease. Although a small percentage of
minorities is representative of the population in a rural state,
it may not allow conclusions about the effect of ethnicity on
communication in the health care setting. Further studies are
needed to explore the impact of ethnicity on perceived
communication difficulties with physicians treating HCV-infected
patients.
In conclusion, this is the first assessment of perceived
communication problems between HCV-infected patients and their
physicians. Patient comments identified previously known causes
for dissatisfaction, such as poor listening, insensitivity, or
not engaging patients as intelligent co-decision makers. In
addition, our study demonstrated the unique role of perceived
abandonment and social stigmatization. Different lifestyle
choices and psychosocial profiles may pose specific challenges
that the medical community may need to address more effectively.
Educational materials should be developed concerning not just
the medical, but also the social and communication needs of
these patients.
Appendix
Interviewing Questions
Can you tell me what your condition is exactly? What physical
limitations do you have and when were you initially diagnosed?
Could you tell us a little bit about yourself: the things you
have done, your roles in life, who you are? What in your life
are you most proud of?
Can you share with us anything specific that might have caused
or helped to cause your illness?
Have any of your family members had similar health problems?
Does this family history worry you?
What impact has your physical condition had on the quality of
your life? Would you say that your quality of life as compared
with 1 year ago is better, about the same, or worse?
As you go through this experience, have you begun to think about
yourself differently?
What has been the hardest thing for you to cope with related to
this experience? How do you you go about coping with your
condition?
How does this illness make you feel emotionally? If there was
one emotion that you would use to express how you feel, what
would that be?
Since you were diagnosed, what would you say has been your
biggest regret? Would you say you feel emotionally worse since
you were diagnosed, about the same as before, or emotionally
better off than before?
Can you share what health-related worries you have? Do you worry
more about your health than you do other aspects of your life?
Did you share these worries with your doctor or nurse?
How would you describe your outlook or thoughts as you look to
the future?
What are the various things that make your life meaningful for
you? What do you turn to when you are in need of strength?
We are interested in the impact this illness has had on your
relationships:
·
A If you were in a crisis, who would you turn to?
·
B Do you have a spouse or significant other? How
has that person reacted to your situation of being ill? When you
think about when you were healthy, would you describe the two of
you as closer, somehow further part, or just as close as you
always were?
·
C Can you describe the level of support you can
find in your family? Can you explain why are you able or not
able to rely on your family to help you through difficult times?
·
D Would you say that you are close to others
outside of your family? Why would you say that? What about
co-workers, are they understanding and supportive?
Have you encountered any negative judgments from others because
of your disease? If yes, can you say who has made you feel this
way and under what circumstances?
How has your disease affected your sense of control in your
life? What are the situations where you feel that you are not in
control?
What has been your experience with your doctors here or
elsewhere? Would you describe it as positive or negative and
what has made it positive or negative? What in your eyes makes a
good doctor?*
Do you feel that you can ask your doctor or nurse any question?
Do you worry that you may be taking their time with your
concerns?
Where do you get most of your medical information? Is there a
source you tend to rely on or believe in the most? In general,
are there other things about your health condition that you
would like to learn from your doctor?
What is the most difficult part of following the treatment the
doctor recommended for you? Can you describe situations where
you are unable to follow the doctor's treatment, such as taking
your medicines, watching your diet, or exercising?
Did you feel comfortable with your treatment decisions? Do you
feel you had choices in your treatment and that they were
respected? Who did you discuss your treatment decisions with?
What really helped you to make up your mind?
Do you use other or supplemental, herbal, or alternative
medicines, and if yes, what are those?
If you were to describe yourself as something - it can be
anything in this world, an object, an animal, anything - before
(when you were healthy) and now, what two things would you
choose?
Is there anything else that you would like to add that would
help us to understand your experience?
Finally, is there anything you would like us to share with a
social worker, a pastor, or your health care team about the way
you are feeling?
NOTE. Bold type indicates questions reflecting doctor-patient
interactions.
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