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 people experienced
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
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
themselves. Interviewees wanted to take treatment in order to get rid of
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.”
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.”
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