People receiving treatment for hepatitis C value clinicians who give information and clinical feedback that is personalised to their individual needs and lifestyle, and cite this as an important facilitator of good adherence. Furthermore, clinicians should better understand and acknowledge their patients’ motivations for persevering with an often difficult course of treatment.
These insights come from two recently published qualitative studies from Australia and the United States, each interviewing around 20 current or former hepatitis C patients.
Barriers and facilitators
Victoria Sublette and colleagues conducted in depth, semi-structured interviews with patients at public hospitals in Sydney, Australia. The interviews aimed to explore each person’s own understanding and experience of taking hepatitis C treatment, with questions about what it feels like to have hepatitis C, how the decision to take treatment was arrived at, their expectations of hepatitis C treatment, the impact of side-effects, whether they thought of dropping out and other issues.
Half the participants were taking pegylated interferon (a weekly injection) and ribavirin (a daily tablet), while the other half took this regimen plus either boceprevir or telaprevir. At the time of the interviews in 2012 the addition of these drugs (both daily tablets) offered a much more effective means of treating hepatitis C than had previously been available. But the treatment still included interferon and many patients experienced significant side-effects.
Since 2012, newer hepatitis C drugs have been licensed and interferon-free regimens have become possible. But in many settings access to these costly therapies is very limited, with many patients either taking pegylated interferon or waiting for improved access to the new drugs. And although interferon-free regimens are easier to adhere to, they will not necessarily eradicate the issue of adherence – it remains a problem in many areas of medicine.
Reflecting the characteristics of people treated for hepatitis C in Sydney, almost all the interviewees were men, with an average age of 52 and having been diagnosed with hepatitis for an average of ten years. Half had left school at the age of 16 and half were unemployed at the time of the interview.
Often the decision to start treatment was motivated by fear. Many participants saw hepatitis as a very serious threat to their health; some had seen loved ones suffer with cirrhosis or liver cancer. One man said:
“I thought I was going to die.... I had hepatitis, I thought I was gone. …I don’t have any choice. If I didn’t get treated it’s not going to go away… there’s no decision to be made, you have to do it.”
Other interviewees were motivated by stigma. Hepatitis C is highly stigmatised because of its association with injecting drug use and some people feel that they are blamed for having brought the infection upon themselves. Interviewees wanted to take treatment in order to get rid of the shame and embarrassment of having hepatitis C.
“But I suppose, because it’s a disease and it’s in me I suppose the one thing that I do feel is dirty and unclean. Yeah, all the time. So as soon as it’s gone, I'll feel all right.”
The style of communication between patients and clinicians had an impact on both the decision to take treatment and the patients’ experience of treatment. Personal feedback on clinical progress was reported by many people to be critical, as it gave them hope and an incentive to continue. Both positive and negative feedback helped them feel informed and in control.
“When I started the program… the viral load was about 1.6. …Then a month after that it came to about 465,000 and another month after that it came to about 165,000. So I could see that it is dropping, so that also gave me hope.”
A recurrent theme was the need for more tailored information, instead of a one-size-fits-all approach. Patients wanted personalised advice based on their health, lifestyle, social, and employment situation.
Not only was the content important, the correct amount of information that patients received was critical. Some people wanted to gather as much information as possible from a wide range of sources, while others reported being unable to cope with ‘information overload’. The authors note that patients who feel overwhelmed by information on their illness may have poor health literacy (i.e. the skills people need to understand health information and make decisions about their health).
“And all the information on Hepatitis C, yeah I'm not really interested in that side of it. Sometimes knowing too much, knowing more for me is too much.”
For all interviewees, the most difficult aspect of the treatment were the side-effects.
“Initially I experienced dizziness, tightness, vomiting. Fatigue. …That’s why currently I’m not working because …I find it difficult because of the fatigue.”
Social and emotional support provided by partners, children and friends gave many interviewees the strength to continue through such difficulties. But others found that when depression was one of the side-effects, this discouraged them from seeing other people. Furthermore, patients who wanted to keep their infection secret could not get support of friends while taking treatment.
Managing multiple daily dosage times, a regimen of up to 19 pills a day (for those on triple therapy), medications that needed to be refrigerated and the weekly injections was also a challenge. Problems with clinic management and processes could also make adherence difficult. Low levels of staffing resulted in long waiting times and rushed interactions with clinicians, while inflexible clinic hours made it difficult for those in full-time employment to attend.
“That’s a pain. I mean, you wait around for hours. I mean, all I wanted today was a result on my blood test, and I've been here for three hours.”
Several interviewees said that being unemployed at the time helped them cope with the demands of the treatment, while others had decided to stop working.
Why do people persevere?
Given these challenges, why do people carry on and complete the treatment? The second study focuses on this question. Jack Clark and Allen Gifford began their research wanting to find out more about poor adherence and the reasons people drop out of care, but were instead struck by the way in which their interviewees described taking responsibility for completing the treatment.
Their in-depth interviews were conducted with patients at a US army veterans hospital near Boston. All but one were men, mostly in their fifties and sixties, who were frequently unmarried. All were taking or had taken pegylated interferon and ribavirin.
Some of the reasons for perseverance were consistent with the clinical rationale for treatment. Several said that they wanted to cure themselves of hepatitis C. Others thought that untreated hepatitis C would inevitably lead to cirrhosis, liver cancer or premature death, and wished to avoid this.
But these were never the sole motivations for sticking with treatment – and the other reasons had more of a moral sense. Many respondents presented perseverance as a virtue in its own right. They described the resolve, self-discipline and self-sacrifice it took to get through treatment.
“I don’t want to do this but I have to. If I want to try to get healthy, I have to do this. You do what you got to do. If I want to do something, I do it.”
Completing treatment could be a proud accomplishment, while quitting would be shameful. Some respondents evoked their military experience, for example this man who was asked if he ever wanted to stop the treatment.
“No. There were times when I really got sick. And you think about it a little bit but not serious. But you think, ‘Come on. Hang tough. You were an Army guy. Gee whiz! Don’t be such a sissy.’”
Several respondents described treatment as part of a larger project of personal rehabilitation. Completing treatment was explained in terms of personal changes from a discredited way of life that had involved drug or alcohol abuse to a clean and sober life.
These accounts echo the Australian study’s finding that hepatitis C treatment could eradicate a stigmatised identity as much as a viral infection.
“Looked in the mirror, I said to myself ‘Either I’m going to stop and clean up and do things right in my life, or I’m going to go all the way down the bad road.’ And like I said that meant cleaning up.”
“I don’t like people looking down on me, which I know they do because of the situation I’m in. But I can change all that. I don’t have to live in that situation.”
Whereas the medical literature typically portrays the patients living with hepatitis C as being at risk of poor adherence or withdrawal because they are unable to cope or are too weak to persevere, these interviewees presented themselves as responsible agents – taking action to slow the progression of the disease and change unhealthy behaviours. They presented themselves as strong, smart and wilful, putting aside temptations and the miseries of treatment.
Even when prescribing improved hepatitis C drugs, healthcare providers “will need deeper understandings of patients’ reasons for pursuing control of their diseases,” the American authors conclude. Clinicians should acknowledge and engage with their patients’ motivations to complete the course.
The Australian researchers make a similar point: “Adopting a patient-centred model that integrates each patient’s personal needs and life situation into their treatment program could be the next positive step in increasing adherence and completion rates for patients living with chronic hepatitis C.”
Sublette V et al. The Hepatitis C treatment experience: patients' perceptions of the facilitators of and barriers to uptake, adherence and completion. Psychology & Health, 2015.
Clark JA & Gifford AL. Resolute efforts to cure hepatitis C: Understanding patients' reasons for completing antiviral treatment. Health, 2015. (Full text freely available).