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Patient perspectives on hepatitis C and its treatment

North, Carol S.; Devereaux, Robert; Pollio, David E.; Hong, Barry A.; Jain, Mamta K.

European Journal of Gastroenterology & Hepatology: January 2014 - Volume 26 - Issue 1 - p 74–81
doi: 10.1097/MEG.0b013e32836382b5
Original Articles: Hepatitis

Objective Much of the research to date on barriers to treatment for patients with hepatitis C has approached the problem from either the perspective of the medical provider or the healthcare system.

Methods To better understand these barriers from the patients’ perspectives, nine exploratory focus groups of patients with hepatitis C (N=48) were conducted in 2008 and 2009, using a hybrid qualitative analysis.

Results Eight content categories emerged. Treatment-related issues, including barriers to care, were most emphasized, representing nearly one-half of the entire content. Need for accurate disease-related information was also extensively discussed. Social factors were important, including considerable focus on stigma. Participants described coping abilities including faith and perseverance.

Conclusion Areas of concern expressed in these focus groups represent underexplored areas that may warrant additional attention or areas for intervention and investigation, such as exploring differences between perceptions of patients and providers regarding the hepatitis C treatment process and addressing barriers to care.

aThe VA North Texas Health Care System

Departments of bPsychiatry

cSurgery, Division of Emergency Medicine

dDepartment of Internal Medicine, Division of Infectious Diseases, The University of Texas Southwestern Medical Center

eThe University of Texas Southwestern Medical Center, Graduate School of Biomedical Sciences, Dallas, Texas

fThe University of Alabama School of Social Work, Tuscaloosa, Alabama

gDepartment of Psychiatry, Washington University School of Medicine, St. Louis, Missouri, USA

Correspondence to Carol S. North, MD, MPE, Department of Psychiatry, The University of Texas Southwestern Medical Center, 6363 Forest Park Road, Suite 651, Dallas, Texas 75390-8828, USA Tel: +1 214 648 5375; fax: +1 214 648 5376; e-mail:

Received April 8, 2013

Accepted May 22, 2013

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Hepatitis C virus (HCV) infection represents a major public health concern, as ∼2.2% of the world’s population – 130 million individuals as of 2007 – are currently infected with the disease 1. Within the USA alone, ∼2.7–3.9 million cases of HCV infection have been reported, and are joined by an estimated 16 000 new cases each year 2.

Despite continued improvements in treatment efficacy 3, a vast majority of HCV patients never achieve a sustained virologic response (SVR) with no evidence of the virus for at least 6 months 4,5. In fact, a recent review found that fewer than 20% of HCV patients in real-world clinical settings receive HCV treatment 5. The primary barriers described in the published literature are factors related to patients’ preferences and behaviors 5,6, physicians’ attributions about their patients 5,7,8, medical eligibility for treatment 5,9, and difficulties with the healthcare delivery system 5,10, as well as problems of communication with physicians 11 and stigmatization 12. Among the most frequently cited reasons for medical ineligibility for treatment are substance use, psychiatric disorders, and medical comorbidities 5,8,13,14.

Important knowledge has been obtained in other medically ill populations by eliciting patient perspectives on their access to medical care and treatment experiences. Patient-identified issues emerging from these studies include: perceived social stigma 15; unrealistic, inaccurate, and/or unmet patient expectations 16; and communication difficulties with physicians 17–19. In contrast, research to date on barriers to treatment for HCV has been conducted largely from the perspective of the physician or healthcare delivery system 20. Patient-focused approaches are needed to achieve a full understanding of barriers to HCV treatment and how it is experienced by patients.

The current study examined patient-perceived barriers to treatment for HCV through focus groups conducted in 2008 and 2009. These focus groups were designed to elicit patients’ perceptions and experiences with HCV infection and treatment. Patient-derived observations may add new insights to the currently available knowledge base of professionally determined barriers to treatment and point to novel ways of increasing patients’ participation in treatment.

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Research setting and sampling

Approval for the study was obtained in advance from the institutional review board of the University of Texas Southwestern Medical Center, and participants provided written informed consent. Participants were recruited by referral from their treating physicians and other community providers and by self-referral in response to flyers posted in local clinics of a publicly funded safety-net healthcare network. This healthcare network consists of one hospital and 11 adult clinics providing care to predominantly uninsured and low-income residents. Inclusion criteria for participation were intentionally broad, requiring only a diagnosis of HCV with or without HIV coinfection and no history of prior or ongoing HCV pharmacotherapy (although most of those with comorbid HIV had received HIV pharmacotherapy). Nine focus groups were conducted with 48 participants. Four of the groups (n=20 participants) were conducted with monoinfected HCV patients and five with coinfected HCV/HIV patients (n=28 participants). Data on participants’ demographic characteristics (sex, race/ethnicity, age) were collected using a self-report form, and this information was available for 77% of participants. The majority (64%) were male. The largest racial/ethnic group was black (65%), with additional representation of white (29%) and Hispanic (6%) participants. The mean (SD) age was 48.2 (8.4) years (median 50, range 24–68 years).

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Focus group methods

Two facilitators (a psychiatrist with experience in conducting focus groups and an infectious disease physician specialist) conducted the groups in a nondirective fashion. Groups were given an initial broad explanation of the purpose and expectations of the group (to discuss their experiences of HCV infection, barriers to treatment, and strategies for coping with their illness); they were encouraged to respond from their perspectives, with no a priori questions or probes. Direct questions asked by participants regarding specific medical information were answered briefly without disruption of the overall flow of the ongoing discussion. The groups lasted 60–90 min on average.

The group discussions were audio recorded and transcribed. A transcribed passage was defined as the words spoken by one participant demarcated by text from another group participant or the facilitator. Only the comments of the group participants (including their questions to the facilitators) were incorporated into the dataset for analysis, yielding a total of 936 coded passages.

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Data analysis

A hybrid qualitative analysis of the focus group data was conducted, utilizing classic elements of both thematic coding and content analysis 21. NVivo (QSR International, Boston, Massachusetts, USA) software was used to organize data from transcriptions by labeling passages of text with codes identifying specified categories. A rater not involved in group facilitation or coding of the data reviewed the transcripts to identify initial categories from the text. Two other raters independently coded the passages into the identified categories. Multiple codes for passages were allowed. Cohen’s κ coefficient, calculated for inter-rater reliability on passages coded by at least one rater for each of the categories, was 0.82 across all categories (range 0.66–1.00), all within the good to excellent reliability range 22. Inter-rater differences were resolved by rater discussion and consensus. This process refined the rules and definitions with specific inclusion and exclusion criteria, yielding finalized categories. After inter-rater reliability was established, the remaining passages were coded by one rater according to the established category definitions.

Tabulation of the number of items coded into each category provided relative frequencies of passages coded for each category. Of 11 initial content categories identified in the transcripts, three (prognosis, symptoms, and changes in daily routine) each represented fewer than 3% of the total passages coded and were dropped from further analysis, leaving eight remaining content categories. Notation was made of any categories not discussed in the individual groups. In only one instance was a category not discussed in groups with at least 40 passages. Therefore, it was concluded that these categories were generally represented across the groups. The proportions of passages coded into the categories are displayed in Fig. 1.

Fig. 1

Fig. 1

Inspection of the data revealed that the monoinfected and coinfected groups did not differ in the proportions of statements devoted to the various categories. Cursory examination of the passages did not support content differences in the monoinfected and coinfected focus group discussions. Because the monoinfected and coinfected groups did not differ sufficiently to warrant separate discussion, the findings are presented monolithically.

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Table 1 provides the final descriptions of all eight categories established by the raters. These descriptions include detailed category definitions; inclusion and exclusion criteria with indications for alternate assignment to other categories are provided as appropriate and specific types of content included.

Table 1

Table 1

The category with the highest overall number of passages was understanding of the treatment process, accounting for nearly one-fourth of all passages. The category with the second largest number of overall passages was second-hand information.

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Understanding of the treatment process

This category includes patients’ thoughts, feelings, and understanding about the treatment process. Many of the passages in this category consisted of participants’ specific questions about treatment and its side effects. Representative quotes among the 223 passages in this category are presented below to illustrate the content.

The problem I have with the discussion on this is I’ve had it for quite a while but nobody seems to be clear about what’s going to happen once you get on the treatments, you know. They don’t talk about how it’s going to affect your job, how it’s going to affect your social life, what arrangements you need to make, you know, if there’s anything you need to change….

Okay, like they say they’ll give it to you for three months, six months, and if they see then it’s not doing anything then they’ll stop. Well, what if you don’t want them to stop? Do you have a choice?

There was a lady that claimed she went through the treatment and she is still on it. She told me about it. She tells me she takes so many pills a day and a shot.

I’ve heard that the medicine causes you to lose weight and hair and makes you feel like you’re on chemo, more or less.

Some participants clearly felt poorly informed about the treatment process. The discussion illustrates how treatment-related information was sometimes received from nonmedical sources such as friends or neighbors.

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Second-hand information about hepatitis C virus/HIV

This category included passages describing what participants had heard about HCV or HIV disease from others, from both professional and nonprofessional sources. The passages in this category were not necessarily the beliefs of the participants but rather the information they had received from various sources. Representative examples of this hearsay information are presented below.

Someone told me I have two types of hepatitis. Is that possible?

They said my sodas, everything, have to have no caffeine in it. I can’t drink caffeine.

I know people that have got it and got jaundice, real sick, and it was hard to keep anything down.

Participants expressed frustration with the amount and quality of information they were provided about HCV by the healthcare professionals they had consulted.

I’m pretty much in the dark. You know, I talk to Dr S___ about stuff, but he tells me [only] so much.

One thing that would help people like us is give us more information. There are many, many things that can make you have hepatitis and stuff.

Shouldn’t we have had [an education] class when I first found out about it? So people, when they first find out, so they won’t be so rebellious. They’re like, ‘I’m never going back there. They lie’.

Because these participants were hungry for knowledge about their disease, when they did not receive it from their healthcare providers, they obtained it from other sources – sources that were not necessarily accurate.

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Social factors

This category consisted largely of concerns related to social support and stigma. Focus group members described challenges in deciding to whom they should disclose their infection status and how this disclosure might affect their relationships, both personal and professional.

Okay, like, Thanksgiving I went over there. She gave me a paper plate. Everybody else got pretty china, you know. I got a paper plate….

My wife is real iffy about telling people at her job that I have it because she works for a blood donation company. She’s afraid they’re going to say, ‘Oh, you can’t work here because he’s a carrier and you could possibly transfer’. I tell her, ‘You know, if they’re going to fire you for that, let them. Go somewhere else’.

And he said he claimed he didn’t know about the hep C and ran for the hills. Well, that is also one of the primary reasons why in the last three and one-half years I have not been dating or been in a relationship whatsoever in that form because it’s kind of like, people find out I have hep C and they run.

I got a great support group….I got support at every stage. I can pick up the phone and call people. People come over and discuss things and talk about things.

I got people now who will come over and ask if I have concerns and help me out and everything.

Social factors surrounding HCV appeared important to these patients as they attempted to navigate their personal lives and careers while having HCV. Feelings of isolation from friends and family were mentioned in nearly all the groups. Participants perceived themselves and were perceived by others to be contagious; they described how this caused further (and unnecessary) isolation from their loved ones. One participant stated that it was far more difficult to disclose having HCV than HIV.

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Need for information about hepatitis C virus/HIV

The focus group members expressed frustration over how little useful information they had about HCV. They indicated a strong desire to learn more about HCV and its effect on their everyday lives, as demonstrated by the many questions they asked during these groups about specific details of HCV.

I would like to know what hepatitis C is.

What does sero-converted mean?

Someone was telling me the liver is one of the organs that can heal itself. Is that a fact?

Does [the hepatitis C virus] pass through, I mean, like me interacting with my grandkids?

Is it contagious? Can we have a big family come over?

The questions raised in the focus groups ranged in topic areas from broad, general information to specifics about food choices, physical contact and transmission, and potential effects of HCV on daily activities. Although some of the questions reflected sophisticated understanding of the disease, most reflected a limited grasp of the most basic information about HCV.

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Treatment barriers

Although this category represented only 11% of all the focus group passages, the discussion indicated the importance of this content. Doctor–patient communication and/or relationships were identified as barriers to care, representing 10% of this category’s passages. These discussions painted poor relationships between patients and medical staff or the system as a whole as a major impediment to obtaining treatment. Some participants described changing their minds about pursuing pharmacotherapy based on their perceptions of mistreatment or misunderstanding.

And I had a doctor in the interim too who wasn’t a doctor, was a physician’s assistant who was quite nasty to me and said, because you didn’t make an appointment, why do you want me to treat you differently….

And if all that doctor is going to do is talk to me, I’m not even going to bother to go back. That’s like I have invested six or seven months in this and I ain’t seen….It just seems like I’m just running over there, talking to them. I mean they’re not doing nothing for me….If they don’t do a biopsy or lab work or stuff, talk to me about what? If they don’t do nothing for me and try to reschedule, then I’m going to tell them don’t even worry about it. I’ve been living with it this long….

[My physician] say, ‘You don’t know what you did to yourself. You just messed your life up. What can I do for you?’ ‘I’m here for treatment. Ain’t nothing I can do’. ‘How did you get it?’ ‘I got shot. You all gave it to me’. He said, ‘What do you expect me to do?’ I just walked back but my doctor wasn’t there. I told them, ‘You don’t have to worry about me coming back’.

Financial and logistical barriers were identified as substantial impediments to medical care. Group members described feeling overwhelmed by complicated systems of insurance and reimbursements from both federal and nonfederal programs. Some participants could not figure out the cost of treatment, and others said they felt like moving targets during transits in and out of jobs and insurance coverage. Those who earned enough through employment to cover their subsistence but as a result no longer qualified for government health insurance described their situation as a ‘lose–lose’ scenario.

But when I go back to work, it’s over. I won’t be able to get insured. The thing that really burns me up, none of my doctors did this, but they did tell me, ‘Don’t worry about it. We need to get this done and we’ll take care of you for the rest of your life’. See, that’s not true. Because just until I get to working again, so right now it’s beneficial for me not to work.

If I want to keep up a quality lifestyle I have to work. But if [I] worked I can’t keep quality health.

A friend of mine had medical insurance and he was on the same treatment. The treatment was so devastating to him…he would miss work….He kept missing so much work they fired him. Well, when they fired him, he lost his medical coverage. There went his medicine. We found him New Year’s. He’s not with us anymore.

Participants expressed further concerns that they felt healthy at the moment and HCV treatment could make them feel ill without any promise of benefit. The participants explained that the asymptomatic course of HCV infection coupled with the possibility of completing a difficult treatment without achieving SVR had deflected them from pursuing treatment.

What would be the disadvantage of not doing treatment if I’m not having any problems and potentially there could be no problem? I’m hearing that it could go twenty years; I could pass away from something else, cancer, and perhaps never become an issue for me. So what would be the advantage, obviously, why should I have treatment for hep C if it’s not a problem and potentially could not become a problem?

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Desire for treatment

Although this category represented a relatively small proportion of the discussion (7%), the participants expressed both a strong desire to receive HCV treatment and substantial frustrations with delays in obtaining it. Reasons stated for desire to pursue treatment were varied and included social, religious, and other personal factors. The details and ancillary information they provided are poignant reflections on the personal relevance of their needs and desires.

I’m 24 and I got life to live, a lot of life. I don’t want to miss out on church no more.

Yeah, I’m willing to try it. The side effects may not affect me the same way.

And I’m the type of person, if I feel like it’s going to help me, then, yeah…come on with it. Quit prolonging it. Then after they keep prolonging and prolonging, then I get mad.

Well, the treatment will be a beginning and it will ease my mind that I am getting treatment and there’s a possibility that it could help me. I always took care of my family really good and my children. Single parent. But I can’t help them if I’m not here. The only way to stay here is to get the treatments you need and not drink.

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Patient fund of information about hepatitis C virus/HIV

This category includes information that the participants stated they believed or understood to be true about HCV or HIV. The participants varied in their knowledge, especially regarding transmission routes of their infectious diseases.

I understand it’s there [HCV in my system], but some people don’t know it’s there.

That is what they were telling me….when they first told me I might have it. I had the antibody. That was kind of confusing and [I was] thrown off by that. You say I have the antibody but you don’t know if I have it or not.

…that you can even get it from using a comb or a brush. If there was a little blood or whatever. That’s why I have my own comb and my own brushes and everything.

And they all said, well in the gay community especially. And one of the things too is they think they’re going to catch it [snaps fingers] like that. Like if you touch…it’s the same old things with HIV, when you thought that if you sat on the toilet.

Now remember that in addition to an additional support playing it safe whenever you do have sex is not only that you don’t want to be exposed to a different strand of HIV, which may complicate your treatment, you don’t want to be exposed to hep C, and the exposure goes hand in hand with safe sex.

A lack of accurate, basic information about the disease process was apparent in the discussions across all of the focus groups.

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Coping methods

This category reflected the ways in which participants attempted to manage their illness and its consequences. Passages in this category included both direct and indirect attempts to improve their lives.

It’s like I’m mature enough to understand, okay, you got to do this for your health. When it came to my mind I was like, okay, do what you can. Make sure you can live. Make sure you beat this.

That’s how I get through the worst case scenario is you pick [yourself] up, brush yourself off, and you laugh about it because when you’re told already you have a disease that will obviously take your life eventually…you’re going to have some problems.

I started treating the HIV virus years ago…my mother said to me…‘You know, there’s nothing we can do about it but pray’….She said those words to me and that’s how I’ve lived this long with the HIV virus. Now once I found out about the hepatitis I started treating that as I treated the HIV.

Despite the many challenges presented by HCV and comorbid HCV/HIV infection, a remarkable reservoir of resilience was apparent from the comments in these groups. Participants described an inner strength and determination to find ways to live their lives despite HCV infection. Several participants pointed to their religious faith and support from family as central in their ability to deal with the burden of their HCV illness.

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These focus groups provided insight into the concerns and desires of a selected group of HCV patients considering treatment. The content of their discussion can logically be conceptualized as coalescing into four sets of concerns. These concerns represent a collection of the identified needs and desires of patients considering treatment for HCV. These may overlap with the opinions of their treating physicians regarding their care, but to the extent that they do not, they remain essential to address as part of engagement in and mutual planning of treatment.

The largest category and two others pertained to treatment of HCV: understanding the treatment process, treatment barriers, and desire for treatment. Even though the participants described a lack of understanding of the treatment process, they strongly desired treatment and they expressed frustration about the barriers to treatment that they had encountered.

Mirroring the discussions in these focus groups, medical providers and researchers have identified financial and logistical difficulties, fears of side effects, and concerns about outcome as barriers to receiving HCV treatment. A problem that was emphasized in these groups that has not been extensively discussed in the literature relates to the frustrations shared by the participants over their early encounters with medical personnel. They provided personal examples of feeling ignored, mistreated, and misinformed about the purpose of a medical visit or the treatment process. For some of these patients, a negative communication experience in a clinic was the deciding factor in discontinuing follow-up medical care.

Some of these problems in communication could be ameliorated by finding ways to better meet patients’ expectations about how they would prefer their clinical provider to interact with them, educating patients about the illness and treatment in language that is understandable to them, and providing sufficient time with patients to permit optimal communication. Problems achieving each of these respective communication goals in patient–physician communication have been previously identified in general medical patient populations 17,23,24 and among patients with hepatitis C specifically 11. Although the literature emphasizes the importance of effective communication with patients, these focus group discussions have indicated that the patients are still not getting the knowledge they desire from their HCV care providers. Improvement in this area has the potential to substantially reduce barriers to care.

Three focus group categories specifically related to disease information: patients’ fund of information, reliance on second-hand information, and need for information about HCV or HIV. Although research has shown that patients lack fundamental knowledge 16, this study’s findings indicated that these patients deeply desired this information and were frustrated by not having it. As a result, they and their families relied on incorrect information from nonauthoritative sources that further perpetuated the stigma associated with HCV.

The topic of stigma associated with HCV identified in this study has been previously identified in patients with hepatitis C 12. In this study, stigma was a substantial focus of concern in the social factors category and was also mentioned in the patient fund of information category. Associating HCV with injection drug use has generated stigma against the illness as an ‘immoral disease’ that may initiate stigma or expectation of stigma from others and feelings of stigma by HCV patients toward themselves 25–27. This stigma may alienate HCV patients from social networks that are an important source of motivation for them to engage in treatment and achieve better outcomes 28. The patients in the current study explained that not only did they feel a personal stigma as a person with HCV, but stigma was also directed at them by others, even from within their own social circles. Treloar and Rhodes 29 suggested that interactions with the healthcare system may also increase stigma through perceived judgment by providers over lifestyle choices associated with HCV infection. This perceived stigma may distance patients from the healthcare system and potentially life-saving treatment – a sentiment clearly echoed in these focus groups.

The coping methods category in these focus groups included descriptions of difficulties in trying to deal with the many challenges related to having HCV. The comments in this category also included remarkable descriptions of personal resilience and determination. These patients made many statements about positive coping methods such as faith and perseverance as helping them to manage their illness and press onward. Positive coping methods have been associated with improved medical outcomes in general, such as with the power of faith 28,30,31. The reservoir of personal resilience and determination described in these focus groups has been largely overlooked in the existing HCV literature.

A main strength of this study was the open-ended nature of the discussions in the focus groups conducted. With little direction for desired content from the facilitators, focus group members with HCV provided a rich narrative of their most salient concerns regarding their disease. This inductive method of inquiry allows the data generated by the study to identify where patient perspectives are consistent or inconsistent with the existing literature that is based on health provider or system perspectives.

Although the findings from this study cannot be expected to generalize to the entire HCV population, this study’s demographic profile is consistent with that of the chronically underserved, difficult-to-treat subset of patients with HCV found in many university medical centers 11,32. Because these patients had not received HCV treatment, their comments about treatment were limited to their expectations of treatment for HCV (some of which they gained from their introductory sessions with their infectious disease provider and some of which were from nonauthoritative sources) and also from their own experiences of general medical treatment and barriers to care. The data for this study were collected before protease inhibitors became available. These treatment advances in the interim have increased the numbers of patients entering treatment, promoted greater chances of achieving SVR, and enhanced awareness of the new treatments through patient education. Most of those with HIV in this sample had received HIV treatment and were thus not naive to all treatment. It is possible that the group facilitation by two physicians could have biased the discussion to focus on issues related to treatment and other medical aspects of HCV.

These focus groups identified the need to find more effective ways to facilitate linkage and engagement of patients into HCV treatment. These focus groups demonstrated that there is need to improve patients’ knowledge of the disease and treatment options, reduce stigma, and improve interactions and relationships between patients and their treating physicians. Because patient motivation for treatment has been shown to improve with encouragement and support of medical providers 28, additional efforts to help medical providers develop more compassionate interactions may have beneficial outcomes for their patients. Specific patient education and orientation classes about new treatments and options would help to provide the information they seek, instill new hope in patients, facilitate conversation between patients and physicians, and reduce stigma.

Future research is needed to extend the findings of this qualitative research study. Additional investigation can help clarify characteristics of those who successfully overcome barriers to obtain HCV treatment, those who have unsuccessfully sought treatment, and those not seeking treatment at all. The differences between perceptions of patients and providers in the HCV treatment process found in this study also warrant further study.

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Dr North was responsible for all aspects of this work, including securing research funding, study design, obtaining the data, analysis and interpretation of data, and writing the manuscript. Dr Devereaux participated in analysis and interpretation of data and writing the manuscript. Dr Pollio participated in securing funding, study design, interpretation of data, and writing the manuscript. Dr Hong participated in security funding, study design, and writing the manuscript. Dr Jain participated in interpretation of data and writing the manuscript.

The authors disclose receipt of the following financial support for the research, authorship, and/or publication of this article: NIH Grant R01 AA15201 (NIAAA) to Dr North and a grant from Vertex Pharmaceuticals to Dr Jain.

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Conflicts of interest

Dr North discloses employment by VA North Texas Health Care System, Dallas, Texas, USA. Points of view in this document are those of the authors and do not necessarily represent the official position of the Department of Veterans Affairs or the United States Government. Dr North also discloses research support from NIAAA, NIDDK, the Department of Veterans Affairs, the American Psychiatric Association, and the Orthopaedic Trauma Association, consultant fees from the University of Oklahoma Health Sciences Center and from the Tarrant County, Texas Department of Health, and speaker’s fees from the Pueblo City/County, CO Department of Health. Dr Jain is a consultant for Merck. She received research grants from Vertex Pharmaceuticals, Gilead Sciences, Pfizer, Bristol Myers-Squibb, Boehringer Ingelheim, Tibotec, ViiV Healthcare, and Roche. For the remaining authors there are no conflicts of interest.

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access to healthcare; barriers to care; focus groups; healthcare; hepatitis C; patient perspectives; patient–physician relationships; qualitative analysis; relationships; stigma

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