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Hepatitis C virus-infected patients (41%) report communication problems with physicians
 
 
  Hepatology
Volume 39, Issue 4, March 2004
 
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
 
  1. Can you tell me what your condition is exactly? What physical limitations do you have and when were you initially diagnosed?
  2. 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?
  3. Can you share with us anything specific that might have caused or helped to cause your illness?
  4. Have any of your family members had similar health problems? Does this family history worry you?
  5. 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?
  6. As you go through this experience, have you begun to think about yourself differently?
  7. 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?
  8. 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?
  9. 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?
  10. 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?
  11. How would you describe your outlook or thoughts as you look to the future?
  12. What are the various things that make your life meaningful for you? What do you turn to when you are in need of strength?
  13. 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?
  14. 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?
  15. 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?
  16. 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?*
  17. 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?
  18. 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?
  19. 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?
  20. 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?
  21. Do you use other or supplemental, herbal, or alternative medicines, and if yes, what are those?
  22. 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?
  23. Is there anything else that you would like to add that would help us to understand your experience?
  24. 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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