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Influencing the decision to begin therapy for hepatitis C virus infection

Some people may start using substances out of a desire to self-medicate—to reduce or temporarily escape distress caused by anxiety, depression, psychosis, post-traumatic stress disorder, physical pain or other conditions. However, many illicit substances are addictive and can damage the brain. What’s more, activities such as sharing needles and other equipment for substance use can place people at high risk for infection with HIV, hepatitis C virus and other infections.

Hepatitis C virus (HCV) infects and damages the liver. In the setting of co-infection with HIV, the speed at which liver damage occurs accelerates. The standard therapy for HCV infection is a combination of these two medicines:

a long-lasting form of interferon called peg-interferon (Pegasys, Pegetron) injected once weekly
daily doses of the antiviral drug ribavirin

Treatment of HCV can last up to a year followed by a six-month waiting period to be sure that this viral infection has been cured. Unfortunately, recovery from HCV in chronically co-infected people is less likely than in people who have HCV infection alone.

In the past three years, research done in Canada and Sweden has found that only a relatively small proportion of HCV-positive people receive treatment, perhaps for these reasons:

Doctors may be hesitant to offer therapy to people whose lives are rendered chaotic because of addiction and/or severe mental health issues.
HCV-positive people may refuse treatment because of many factors, including fear of side effects.

Researchers in Los Angeles conducted a study to try to understand what factors influence decision-making by HCV-positive people. They found that, in addition to other factors, the partnership forged between doctors and patients plays a key role in the decision to initiate therapy.

Study details

Researchers recruited 35 HIV-HCV co-infected people who were patients at clinics in Los Angeles. Also recruited were 11 doctors from the same clinics who prescribed HCV therapy. All participants were extensively interviewed.

The average profile of the 35 co-infected people was as follows:

11% female, 89% male
age – 50 years
CD4+ count – 470 cells
77% had a history of addiction to alcohol or illicit drugs
substances used in the past included cocaine, crystal meth, heroin, marijuana
nearly 60% of people disclosed that they injected illicit substances

Results—HCV treatment

A total of 26 people reported that their doctors offered them treatment for HCV infection. Of these 26 people, 17 accepted and 9 declined treatment.

Taking into account many personal and behavioural features and factors—age, CD4+ count, gender, ethno-racial group, sexuality, current and past substance use—the researchers could not find any significant difference between people who initiated HCV therapy and those who did not.

Results—influencing decision-making

According to the researchers, during interviews patients reported “a range of factors” that affected the choices they made about treatment. For instance, among people who refused to initiate HCV therapy, the following issues were cited as being critical to that decision:

hopes that more effective and tolerable medicines will become available in the future
not being psychologically ready for treatment
in people who were currently free from HCV-related symptoms, there was a desire to avoid treatment-related side effects

Among participants who chose to initiate treatment, here are some of the themes cited as being influential on their decision-making:

not wanting to “waste time” because they were becoming ill
wanting to be cured of HCV and therefore in a better state of health
a feeling of having nothing to lose
a sense of “trust and faith that their doctor would help them be successful with treatment”

Need to preserve health

The researchers found that the most common theme that was influential in the decision to begin therapy was that patients were concerned about the effect of HCV infection on their liver and overall health. One participant said this about his decision to begin therapy for HCV infection.

“You have a choice. If I wanted to remain healthy and I wanted to continue having a productive, positive life, even with the HIV, this was necessary.”

Some participants spoke about the feeling of “having nothing to lose” when considering the impact of HCV treatment on their health, as follows:

“I feel like I have nothing to lose. The only thing that I have to do is try it. Hopefully it will work. But if it doesn’t work and the hep C is still there, if I don’t treat it, it is still there.”

Treatment readiness

Researchers found that a sense of personal readiness for HCV treatment was a strong influence on decisions about starting or deferring these medicines.

For some patients, being able to engage in their care and treatment of HIV and being able to bring this co-infection under control gave them a sense that HCV could also be controlled and, in some cases, cured.

All participants were aware of the side effects associated with HCV treatment and the researchers noted that “several patients spoke of the need to be ready to tolerate and handle the potential side effects if they were to start [HCV] therapy.”

Among the 17 patients who decided to begin HCV therapy, seven (41%) were confident that they could handle HCV treatment-related side effects. Among the patients who refused to begin HCV therapy, only one out of nine felt that they could cope with treatment-related side effects.

Many patients found that treatment readiness meant having a sense of stability, which they expressed in the following ways:

feeling stable mentally and emotionally
having substance use under control
having a fixed address
being employed

Social support

About 35% of patients who decided to initiate HCV therapy found that social support—usually in the form of a support group—was helpful. Perhaps the most important aspect of social support for patients was described by the research team in this way:

“Being able to address their fear of side effects with a patient actually in treatment or who had recently completed treatment helped dispel misunderstandings about the treatment [of HCV].”

Doctors and patients

Most people (65%) who decided to start HCV treatment told researchers that having a supportive doctor influenced their decision. The researchers found that patients who decided to begin therapy “often made especially strong statements about the quality of relationship that they had with their doctor.”

One patient spoke about the trust that he/she had with the clinic doctors in this way:

“It’s a trust between you and your doctor. I think in a way I trust her because she cares. [It’s not as if I’m just another file to her]. I ask her questions; she answers me. It was easy.”

When researchers asked the patients exactly how they found their doctors supportive, patients used the following words and phrases:

dependable
responsive
provided hope and encouragement about the benefit of therapy.

The doctors

To help motivate patients to start HCV therapy, some doctors used the following strategies:

emphasized the importance of treatment in ultimately improving health
raised the possibility of curing HCV infection
discussed a plan to help prevent and treat medication-related side effects

Doctors also mentioned that trust between health care providers and patients was important to their relationship. One doctor made this comment:

“I think that patients are only going to undertake difficult courses of action if they believe that there’s merit there to get to that place. Many of the patients rely upon the credibility of their physician, so the establishment of trust. People only do things that they believe in. They only listen to people who they trust. So it’s by establishing a real commitment to patient well-being and clear direct communication with patients to follow through, and I believe that it’s very important to establish that.”

The research team found that the doctor-patient relationship was prominent in its influence on treatment decision-making. They stated that this relationship “may be particularly important among ethnic minorities where there are cultural differences in attitudes toward the medical establishment.”

The team also stated that the decision to begin HCV therapy is more than just comparing a list of pros and cons; it is “ an interactive process between [health care] providers and patients who are partners in the management of the patient’s health.”

The Los Angeles researchers have uncovered some interesting aspects of treatment decision-making among HIV-HCV co-infected people and their health care providers. However, this type of research—developing a sound questionnaire, interviewing people and then later making a transcript for analysis—is time-consuming and relatively expensive. As such, this was a relatively small study and its results cannot be extended to many co-infected people. Still, the findings from this study may be useful for infectious disease specialists, hepatitis clinics and public health units as health care providers grapple with the complexities of co-infection and ways of helping their HCV-positive patients.

—Sean R. Hosein

REFERENCES :

1. Hagan H, Pouget ER, Williams IT, et al. Attribution of hepatitis C virus seroconversion risk in young injection drug users in 5 US cities. Journal of Infectious Diseases. 2010 Feb 1;201(3):378-85.

2. McLaren M, Garber G, Cooper C. Barriers to hepatitis C virus treatment in a Canadian HIV-hepatitis C virus coinfection tertiary care clinic. Canadian Journal of Gastroenterology. 2008 Feb;22(2):133-7.

3. Falconer K, Sandberg JK, Reichard O, et al. HCV/HIV co-infection at a large HIV outpatient clinic in Sweden: feasibility and results of hepatitis C treatment. Scandinavian Journal of Infectious Diseases. 2009;41(11-12):881-5.

4. Soriano V, Vispo E, Labarga P, et al. Viral hepatitis and HIV co-infection. Antiviral Research. 2010; in press.

5. Osilla KC, Ryan G, Bhatti L, et al. Factors that influence an HIV coinfected patient’s decision to start hepatitis C treatment. AIDS Patient Care and STDs. 2009 Dec;23(12):993-9.

Created on: 01/21/2010

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