Psychosomatics 49:494-501, November-December 2008
doi: 10.1176/appi.psy.49.6.494
© 2008 Academy of Psychosomatic Medicine
Psychosocial Issues in Hepatitis C: A Qualitative Analysis
E. Amy Janke, Ph.D.,
Sarah McGraw, Ph.D.,
Guadalupe Garcia-Tsao, M.D., and
Liana Fraenkel, M.D., M.P.H.
Received July 18, 2006; revised February 28, 2007; accepted March 16, 2007. From the Center for Management of Complex Chronic Care, Hines VA Hospital, Hines, IL; New England Research Institutes, Watertown, MA; the Dept. of Medicine, VA Connecticut Healthcare System, West Haven, CT; the Dept. of Medicine, Yale University School of Medicine, New Haven, CT; and the Hepatitis C Resource Center, VA Connecticut Healthcare System, West Haven, CT. Send correspondence to E. Amy Janke, Ph.D., Center for Management of Complex Chronic Care (151H), Hines VA Hospital, P.O. Box 5000, Hines, IL 60141. e-mail: Elizabeth.Janke{at}va.gov
© 2008 The Academy of Psychosomatic Medicine
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ABSTRACT
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BACKGROUND: Despite demonstrated prevalence of psychosocial problems among hepatitis C (HCV) patients, little is known about how these problems develop, why they are sustained, and how clinical providers can effectively intervene. OBJECTIVE: The authors used a qualitative approach to investigate the nature of psychosocial issues in HCV. METHOD: Focus groups were conducted with HCV patients. RESULTS: Participants discussed significant feelings of anger, depression, and stigma associated with the diagnosis and noted that these feelings/experiences isolated them from potential sources of social support. CONCLUSION: Results have important implications for clinical providers and suggest pathways by which HCV-related psychosocial factors may interact with and affect quality of life.
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INTRODUCTION
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Hepatitis C infection (HCV) is the most common chronic bloodborne infection in the United States.1 Currently, an estimated 3.9 million Americans (1.8%) are believed to be HCV-positive,2 and rates of morbidity and mortality are expected to increase significantly during the next 20 years.3 The impact of HCV infection on both individual patients and society is high. Chronic HCV is the leading cause of liver transplantation in the United States,4 and HCV can result in cirrhosis, liver failure, hepatocellular carcinoma, and death. Medical and work-loss costs from the disease are estimated to exceed $600 million annually.5 The combination of interferon (INF) and ribavirin is an effective treatment for some patients with HCV, but this therapy is expensive and often poorly tolerated, and it results in a sustained response in fewer than 30% of patients with the most common U.S. genotype.6,7
It is generally well established that patients diagnosed with chronic HCV report a variety of associated psychosocial problems, including a reduction in health-related quality of life (HQOL)8,9 and an increase in symptoms of depression and anxiety.10–12 They are also at greater risk for stigmatizing experiences, both from the general public13 and those in the healthcare system.14 Moreover, treatment of HCV with interferon therapy can also cause the similar symptoms of depression, anxiety, and irritability that are common with the disease itself.7 However, despite the notable evidence supporting the prevalence of psychosocial problems among patients with chronic HCV, little focus has been given to investigating how these problems develop and interrelate, why they are sustained, and what clinical providers can do to intervene.
Multidisciplinary approaches with a biopsychosocial focus toward research, assessment, and treatment are considered the gold standard in many chronic diseases, such as HIV,15 and some have made similar calls for multidisciplinary models of care in HCV.16,17 Although, intuitively, these recommendations make sense, full and effective implementation of this approach is limited until we understand more clearly the complex interaction of personal and illness-related factors that influence patient attitudes, acceptance of and adherence to treatment, and the impact of these on disease outcome. Thus, the purpose of this study is to understand psychosocial issues, as reported by both treated and untreated individuals with HCV infection. By using a qualitative approach, we hope to uncover issues that can affect current understanding of the multidimensional nature of chronic HCV, inform the future development of biopsychosocial models of this disease, and guide practitioners in providing integrated care for HCV patients.
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METHOD
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Participants
Data for this study were collected as part of an investigation on patient decision-making about treatment for HCV. Detailed information about the recruitment and research methods is found in Fraenkel and colleagues.18,19 In brief, participants were recruited through outpatient liver clinics from Yale-New Haven Hospital and the Veterans Administration (VA) Connecticut Healthcare System. Healthcare providers at the clinics referred patients to the study. Individuals were eligible if they had biopsy-proven HCV, were currently undergoing treatment for HCV, had received treatment in the past 6 months, or had been offered treatment but refused.
Data Collection and Measures
Eight focus groups were completed between January 2004 and August 2004. The focus groups had an average of five participants and took 90 minutes to complete. The same, trained investigator (SMcG) moderated all sessions. The sessions were audiotaped, and the tapes were transcribed to written form by a professional transcription service. All participants gave informed consent, and both the VA Connecticut Healthcare System and the Yale University Institutional Review Boards approved the study.
A structured discussion guide (see Appendix 1) covered 10 questions about current treatment status; reactions to treatment, including physical, emotional, and social effects; expectations about their treatment experiences before beginning treatment; and questions and concerns about treatment and the decision-making process. Demographic information, including age, gender, level of education, marital status, occupation, history of mental illness, and self-reported health status (using the Overall Health Status question from the SF–36) was collected at the beginning of each focus group by use of a self-administered questionnaire.
Data Analysis
The "constant comparative method"20 was used to analyze the data. Using this iterative approach, two analysts independently read the transcripts and developed an initial list of themes. Themes were revised and refined on a second reading. QSR*NUDIST (Sage Publications Software, Thousand Oaks, CA) was used to identify and sort text across transcripts for each code.21
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RESULTS
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Description of the Sample
A total of 40 patients (80% men) participated in eight focus groups. The mean age (standard deviation [SD]) of the study sample was 51.5 (5.2); range: 40–60 years; 82% were white; 59% had more than a high school education; 55% were employed; and 38% reported having very good or excellent overall health status. At the time of the session, 32.5% were in treatment, 50% had completed treatment, and 17.5% had refused treatment.
Focus-Group Findings
Several key themes emerged from focus-group discussions. Nearly all members discussed the impact of symptoms and side effects of chronic HCV and its associated treatment. Because these discussions are consistent with previously published reports, for example, the relationship between chronic HCV infection, INF treatment, and flu-like symptoms and abdominal complaints,19,22,23 they will not be detailed here. However, group discussions additionally focused on feelings of emotional volatility, stigma, and disease impact on social relationships. Participants discussed significant feelings of irritability, anger, and depression along with experiences of stigma related to being diagnosed with HCV. They also noted that these feelings and experiences led to a desire to isolate themselves from potential sources of social support. The following sections describe these themes in greater detail:
Anger and Reduction in Impulse-Control
Participants in every focus group described experiencing intense feelings of irritability, anger, and outright rage. Almost all of the participants who described these feelings found them to be disturbing, unexpected, and unfamiliar. Frequently, these feelings were directed toward the people around them. A number of participants expressed difficulty controlling these feelings of anger, with some describing a significant loss of impulse control.
Like, I blew up, and have rages and yell at people, and then I’d say, what in the world am I doing? When I’d get home I was so upset with myself. (Group 2)
I stayed stuck on mean and evil... Once I get that shot, I try and avoid him [grandson], because I know how mean I’m going to get. I’m going to be hollering at him, which is why I do not want to do that. But looks like everything he does aggravates me.... Don’t talk to me today, because you are going to say something and I’m going to get angry with you. (Group 4)
My fuse definitely is shortened. You know? Like I get really anxious at traffic lights, enough to get me punching the dashboard sometimes. (Group 7)
One participant expressed the notion that feelings of irritability and anger were fundamentally different from the physical effects of the treatment:
You know, I could have, like, dealt with the physical effects easier, I think. I was not real depressed or nothing, but just irritable, snappy, real short-fused. (Group 8)
Some described difficulty controlling what they said to others:
...you are pretty much out of control. Little things, you snap, yell, scream.... at the moment it is just this bubbling, boiling, bursting from within [overwhelming] of emotion that just rushes up inside of you and sort of controls you at that second. (Group 2)
Because the next thing I knew, my ears were hearing the words like I’m saying that were supposed be only thoughts. (Group 8)
Others described difficulty controlling their actions when these feelings of anger arose:
I had two incidents of road-rage, one where I put my fist through a driver’s window, cut my hand, and actually drove the glass into his shoulder. I’ve never done anything like that in my life. (Group 4)
If somebody did something, like, I had a problem with the neighbor...I wanted to go out there and beat the [expletive] out of him... . If somebody was not there holding me back, I would have went out there and hit the guy. (Group 6)
One other time, my wife started [expletive] at me. I pulled over to the side of the road. I opened the door and I pushed her right out of the car.... And I was so mad, if I would’ve been driving 60 miles an hour, she would’ve been out the door. And it was like an uncontrollable sense of anger. I could not get a handle on it. (Group 4)
Sadness and Depression
Participants in every group discussed feelings of depression, but some particularly associated this sadness with feelings of irritability and the "emotional roller-coaster" that comes with having chronic HCV and its associated treatment. Some participants noted that changes in emotions were sudden and unpredictable.
I was seriously depressed, I just felt. I just feel like crying all the time. And I never, ever felt like this in my life. And it was so dramatic.... all of a sudden. And it happened very quickly, which was very, very frightening, because I knew of the side effects—people get suicidal and homicidal, and I thought, ‘Oh, my God, I’m going to be bananas.’ (Group 7)
I think I was too miserable to feel depressed.... if depression is being in a dark place, I was in a dark place.... And this is a dark place. It was a dark place for me. And if that is depression, then I would say I was depressed. (Group 8)
I felt like I was coming down with Tourette’s or something. You know, I’d be sitting there real quiet and all of a sudden I’d go.... You know? It must have been me. (Group 8)
The experience of such strong and labile emotions led some participants to express the notion that they felt they lost their sense of self:
I cannot help it; I just do not know who I am now. (Group 8)
You are set in your world and role for a long time. You know yourself, but all of a sudden, this drug is doing things to you that make you a little flaky around the edges. (Group 2)
When I was on the ribavirin, it was the mood swings were very severe, and they were uncontrollable. I did not know who I was...I was ready to slam somebody through a wall. (Group 8)
For some participants, these feelings of anger and loss of control became so strong that they were linked to suicidal and even homicidal thoughts:
And I’m thinking, I never had any suicidal tendencies, but I wanted to kill my neighbor next door, because... Hold me back. Hold me back. (Group 6)
You know, I just lost it one day. ... And I just screamed every four-letter word and every this and that, and I wish I did not wake up, and I did not even want to wake up anymore. You know I had no feelings of killing myself; I’m too much of a coward. (Group 6)
One participant expressed the sense that, after completing INF treatment, the feelings of anger he experienced during treatment turned into feelings of sadness:
I thought it was over. Thank God it is over. But it is not always over. I’m still getting over some residual, and also my anger went to sadness, went to actual feelings of depression.... I started having that after the treatment, after I stopped the injections. Now I was not having a rage, but now I was really beginning to have the depression, where I really felt bad. And, like you, I could not blame it on that. I could not say, ‘Well, it’ll just be over next Thursday. I’m not taking the medicine anymore.’ And for me, in some ways, that was harder. And you get off it slowly. It does not just go away when you stop taking the medication. (Group 2)
Stigma
Many participants (six out of eight focus groups) also talked about their awareness of the stigma and negative social perceptions associated with HCV. They perceived stigma not only from acquaintances but also from family members and even healthcare providers. For example, several participants expressed a belief that others—including healthcare providers—sometimes assumed their infection resulted from substance abuse or other stigmatized behavior.
At first, I thought, ‘I cannot tell anybody...’ (Group 6)
A lot of people do not know anything about it, and it scares them. Also associated to drug use and everything. It is just misinformation. They have no idea what it is or anything. They’re afraid of the unknown. (Group 3)
The first thing they think about is that you have done something wrong to acquire this. (Group 2)
The first time I went for treatment, a lot of it they thought was [from] drug abuse, because they just were saying you should not be having this much joint pains and all this kind of business. (Another participant replied): "Don’t you hate when they say that?" (Group 6)
Several participants described how stigma associated with HCV led them to limit their openness about their illness:
People are uneducated about it, and right away you are like a dirty person or whatever. People are so judgmental that you are better off being confidential about it. (Group 7)
So it is almost like you are afraid to tell anybody, or it is taboo. It is just like when I had cancer. People would say: you are walking around with a big C on you, instead of a big H on your head. (Group 2)
This stigma also resulted in tension and strained interactions in social relationships, even among family members:
I remember sneezing while I was handling some silverware, which I would’ve rewashed, anyway, but I remember my sister-in-law... just being freaked out, just really not knowing. And I’m like, "It’s OK. It’s blood-borne. Unless we exchange body fluids here, you are OK." (Group 5)
And people do not understand it, so they’re afraid that if I touch you and you have cancer, I’m going to die of cancer. You’ve got Hep-C; can I breathe in this room? (Group 2)
Social Isolation
Feelings of emotional volatility and concern about stigma led many participants to withdraw or isolate themselves from others. Social isolation was a concern described by participants in seven of the eight groups:
I get so aggravated I just shut down completely. I go home; I go in the basement.... Don’t bother me. (Group 4)
And, like when I was down, I mean that would sometimes last for days, just being, "Leave me alone. I do not want to be bothered. Go in the other room and leave me." (Group 4)
I developed, from the first time, and still now, a fear of socializing outside with people. (Group 6)
And I felt that it really became out of my control, so I literally just completely withdrew. And I was perfectly happy living that way. I really did not want to deal with people, I mean in any way, shape, or form. (Group 2)
Some also isolated themselves because they did not feel well and had lost the desire to seek out social contact:
I just did not want to dress up and go anywhere because I just did not feel normal. (Group 6)
I could not do it, from the medication. So, that part of it, people did stop asking me, toward the end.... Socially, the isolation was there when I felt the worst, when I was in my bed for 48 hours. (Group 6)
Some participants noted that feeling confused and overwhelmed also led them to withdraw socially:
I could not remember someone’s name.... It is like if I’m around my neighbor too much, they’re going to think I’m an idiot, because they’re going to wonder why I keep forgetting everything. And so that was part of the withdrawing. It is not just the anger, but the confusion. It is like I just do not want people to see me like this and I do not want to have to deal with it. (Group 2)
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DISCUSSION
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This study highlights several key themes that may lead to better understanding of the multidimensional nature of chronic HCV and the need for improved, integrated care for HCV patients. In the present study, many patients discussed a striking level of emotional volatility, ranging from irritability to outright rage. This lability was associated with reduced impulse control, anger, and feelings of sadness and depression. Participants also discussed a keen awareness of stigmatization and communication difficulties related to their HCV diagnosis from both providers and social peers, and perceived that this stigmatization strained even close family relationships. Finally, participants discussed feeling significant isolation—in part resulting from their experience of stigma and emotional volatility.
Although the relationship between depression and chronic HCV,24 and depression and INF therapy for HCV,7 is generally well established, symptoms of anger and hostility have been given relatively little attention in systematic investigations of psychological correlates of HCV. A few previous studies have found an increase in irritability, anger, and hostility in HCV patients undergoing INF therapy.7,25 It is not clear from existing literature whether a similar relationship exists in treatment-naive HCV patients. However, the current findings suggest that feelings of emotional volatility are present in HCV patients, that these emotions run the gamut from irritability to intense—at times uncontrollable—hostility, and that these emotions have a profound impact on the patients’ sense of self and their interactions with others. Furthermore, the results of this study suggest a relationship between the patients’ experience of emotional volatility and difficulties interacting with others, including clinical providers, social peers, and family.
Patients in the current study related social isolation and changing intra- and interpersonal relationships to difficulties with emotional volatility and their experience of HCV-related stigma. Previous research examining stigma in HCV has found that stigmatization is a common emotional experience, with a profound impact on social relationships and overall quality of life.13 Importantly, communication difficulties and perceived stigmatization from clinical providers may negatively affect treatment adherence. Research suggests that patients with higher levels of emotional and social problems are more likely to report conflicts with physicians,14 and that patients with interpersonal problems are also more likely to be noncompliant with treatment.26 The current study further supports the hypothesis that emotional conflicts, social problems, perceived stigmatization, and impaired communication are present in chronic-HCV patients. Furthermore, these findings may suggest that these problems are interrelated and, in combination, contribute to the negative health-related quality of life (HRQOL) often found in these patients.
The current findings have important implications for clinical providers. First, it is critical for providers to assess for psychosocial difficulties in their HCV patients, regardless of treatment status. This advice is not new; previous research and clinical guidelines have made similar recommendations.27 However, the current findings identify more specifically the kinds of symptoms providers should assess. Previous recommendations tended to focus primarily on assessment and treatment for symptoms of depression. Although, certainly, this is a valuable recommendation, given what is known about the relationship between depression and chronic HCV, but the current findings suggest that it is particularly important to consider the variety of ways in which psychosocial difficulties can present in HCV patients.
In the current study, patients discussed irritability as a troubling symptom. Of note, this irritability frequently occurred in tandem with sadness, mood lability, and fatigue. There is evidence from other studies that HCV patients may exhibit symptoms of fatigue and anhedonia along with symptoms of irritability and agitation more typical of hypomania25—yet no disorder with such a symptom profile clearly exists in the current classification of mental illnesses. Indeed, mixed states—simultaneous mixtures of depressive and hypomanic symptoms—have an unclear place in current diagnostic criteria. DSM–IV28 classification includes bipolar I mixed state, where full criteria of both mania and major depressive episode must be concurrently present. However, these criteria do not accurately describe the picture of depression and irritability presented here by these HCV-positive patients. Recent research in affective dysregulation points increasingly to the heterogeneity of depressive states. Indeed, it seems likely that a continuum exists between the current nosology of depressive and bipolar disorders that accounts for various atypical symptoms, including irritability, panic, hypersomnia, and mood lability.29 The findings from the present study raise the possibility that HCV-positive patients may commonly fall within this continuum. For example, although irritability such as that evidenced by these patients is not a cardinal feature of the current DSM–IV diagnostic criteria for either depression or bipolar disorders, research suggests that it is common as part of episodes in major depressive disorder and even more common in major depressive episodes in bipolar II disorder.30 Also, major depressive episodes with irritability demonstrate a higher likelihood of association with other atypical symptoms, such as hypersomnia.30 These descriptions of "irritable-hostile depression" and their association with fatigue map well with the symptom reports of patients in the present study, and they present a promising avenue for further research to promote understanding of the unique experience of these patients.
Thus, it is important for clinical providers to be aware of difficulties classifying HCV-related psychiatric disorders and important to realize that presenting symptoms may be related to a combination of disease, treatment, and personal factors. Clinicians need to assess both typical and atypical symptoms of mood disorders—including anger, irritability, mood lability, sadness, anxiety/panic, and hypersomnia/fatigue—and ask about the impact of these on health, relationships, and social interaction. It is essential for providers to consider the impact of these psychosocial factors on patients’ health status and overall quality of life. In the current study, patients reported that their emotional volatility made them feel alienated from themselves and others, and placed them in situations where they might be in danger of doing harm to themselves or others. Other research has found that higher scores on anger/hostility scales of symptom checklists are associated with poor treatment adherence.26 Given these findings, it is imperative that clinical providers assess for and address complaints—such as the emotional volatility expressed by patients in the current study—that might not fit neatly into established diagnostic categories, but may have significant impact on the patients’ quality of life, adherence to treatment, and overall health.
There are several steps providers can take to ensure comprehensive assessment of HCV patients’ psychosocial status. Providers should discuss psychosocial issues with patients early in the treatment process to help foster effective communication and promote early identification of problems when they occur. Indeed, many patients in this group discussed the need for and positive impact of social support and communication with clinical providers.19 Whenever possible, clinicians should seek to work with multidisciplinary teams and/or consult mental health care providers for guidance on assessment strategies to determine the nature and extent of psychosocial difficulties in HCV patients. A thorough clinical interview should address both physical and emotional aspects of the disease (and of treatment for those currently on INF therapy). Providers should specifically ask about all aspects of mood, including mood states such as irritability and emotional volatility, and their impact on patients’ daily functioning. Given the relationship found in some studies between anger/hostility and poor adherence to INF treatment, it is particularly important to screen for issues of emotional volatility before initiating INF therapy.
In patients for whom medication treatment of mood disorders appears warranted, determining where the patient falls along a continuum from unipolar to bipolar disorders is very important. Thorough clinical assessment is critical to deciding appropriate treatment course. Although antidepressants, in particular selective serotonin reuptake inhibitors, are currently recommended for the treatment of mood disorders in HCV patients,31 these may not be the most beneficial treatment for patients demonstrating symptoms of an "irritable depression." Providers should use caution in prescribing antidepressant therapy in patients expressing significant emotional volatility because antidepressant therapy may worsen a mixed depressive state by increasing psychomotor agitation, racing/crowded thoughts, and suicidal behavior, whereas antipsychotics and mood-stabilizers often improve the condition.32 Given the potential negative results for antidepressants in mixed states, the optimal treatment of mixed depression may be a combination of antidepressants and mood-stabilizers, with antidepressants added when mood-stabilizers have appropriately treated the more excitatory symptoms.33 However, there is very little guidance currently available on the use of anti-manic therapy in HCV patients. When possible, treatment options should include both medical and psychological protocols, and, once again, multidisciplinary teams and/or mental health care providers should be consulted to develop treatment plans that fully address the complex physical and emotional needs of the HCV patient.
Given the qualitative design of the current study, it is difficult to determine the proportion of patients who experienced these symptoms and the statistical associations among participant characteristics and the psychosocial difficulty they experience. It is impossible to know the impact of other confounding factors on patients’ reports as presented here. For example, many patients may have made substantial lifestyle changes (such as quitting smoking, abstaining from alcohol) to accommodate diagnosis and treatment. Certainly, these could contribute to some of the irritability described here. Although this article highlights themes such as emotional volatility, stigmatization, and isolation, it should be noted that chronic HCV infection and its associated treatment result in a dynamic interplay of biopsychosocial factors—not all of which are categorically negative. Caution should be exercised not to view HCV infection as a one-dimensional disease characterized solely by anger and depression. Also, although every effort was made to reduce systematic bias, it is possible that the study design (including the kinds of questions asked, the order in which they were asked, and the setting in which groups were conducted) contributed to the study results. The generalizability of these results is limited, given that information was only collected from patients seen at two sites in Connecticut; and focus groups of this type can involve selection bias and ought not to be considered a representative population sample in the statistical sense. However, recruitment purposefully focused on patients who underwent therapy as well as those who refused treatment in order to ensure a broad representation of patients’ experiences.
Despite these limitations, this study suggests that, among HCV-positive patients, emotional volatility and the perception of stigmatization are common and disturbing experiences that may be related to patients’ increasing social isolation. The current findings provide additional insight as to how HCV patients may come to experience reduced HQOL and reinforce the notion that managing psychosocial distress should be a part of managing HCV disease. Future quantitative studies should further address the themes discussed in this article, work toward modeling the process of reduced HQOL in hepatitis C patients, and continue to provide guidance to providers caring for HCV-positive patients.
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ACKNOWLEDGMENTS
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This study was funded by VA Health Services Research Department Project Grant II-R 03-162-1 and the Yale Liver Center Pilot Project Grant DK P30 34989. Dr. Fraenkel is also supported by a K23 Award (AR048826-01 A1).
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REFERENCES
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ABSTRACT
INTRODUCTION
