Communication is a big part of working with patients with hepatitis C virus (HCV). From the moment of breaking the news to patients that they have the disease, to treating them, and follow-up — these all work best when there is a good exchange of information and a healthy therapeutic alliance.
Bruce Bacon, MD, of Saint Louis University School of Medicine, notes that one of the key things to address at the beginning is how a patient might have gotten HCV in the first place — many patients actually don’t know: “It just kind of gnaws at them, not knowing, so it’s useful to go through some of the epidemiology so they can try and understand,” Bacon told MedPage Today.
Some people might have dabbled in high-risk activities in their youth, and as middle-aged adults have forgotten about it. On the other hand, some HCV patients have current high-risk behaviors. Bacon said that while some doctors dismiss these patients, assuming that re-infection after treatment is likely, “what I usually do is say, ‘It’s a good idea for you to get your addiction under control and figure out where this is, so you don’t have that interfering with your treatment as you go on.'”
Directing patients to other programs such as addiction treatment programs or psychological counseling might help, and provides encouragement with a more positive message.
The next part in talking to patients is discussing the consequences of the disease. Some patients may have only mild liver enzyme abnormalities, but others may have serious liver disease that needs attention, Bacon continued.
“When I see cirrhotic patients, I tell them, ‘Look, the treatment that we’ll do here has a high likelihood of being successful in curing you of hepatitis C, but you’re still going to have cirrhosis, and we’re still going to see you for that.'”
It’s also important to address why treatment is needed and what the treatments are. “We spend a lot of time talking about how we treat people and what we use,” he said.
The wrench in the works however, is that once a treatment has been selected, an insurance company might decline coverage. Many Medicaid and some private insurance programs limit approval for treatment to patients with cirrhosis, advanced fibrosis, and those who have had three drug-and-alcohol screens over a 3-month period.
There are also issues around coverage not being available for those whose disease is not yet very severe. Explain the issues with patients, and the possible strategies — and time — that may need to be undertaken to convince insurance providers to cover the treatments. Another possibility is to apply for funds offered by some pharmaceutical companies to help patients with inadequate insurance coverage, Bacon said.
Once patients start treatment, it’s vital that they understand they have to take the medication as prescribed and not miss doses.
Other issues worth discussing are strategies to prevent transmitting the disease while patients are still infected, and to avoid getting the disease again once they are cured, Bacon said: Tell patients they should avoid doing things such as sharing toothbrushes or nail clippers, not sharing needles or using hard drugs, and avoiding any sort of activity that has a chance of blood-to-blood transmission.
While the hepatologist or gastroenterologist should talk to patients about all these issues, there are other healthcare providers with important roles in reinforcing the messages, including clinic nurses, physician assistants, and the patient’s family practitioner.
According to the HCV Guidance from the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America, counseling is intended to help reduce progression of liver disease and prevent transmission of the virus. The key points to address:
- Abstinence from alcohol and, when appropriate, interventions to facilitate cessation of alcohol consumption should be advised for all persons with HCV infection
- Evaluation for other conditions that may accelerate liver fibrosis, including HBV and HIV infections, is recommended for all persons with HCV infection
- Evaluation for advanced fibrosis using liver biopsy, imaging, and/or noninvasive markers is recommended for all persons with HCV infection, to facilitate an appropriate decision regarding HCV treatment strategy and determine the need for initiating additional measures for the management of cirrhosis (e.g., hepatocellular carcinoma screening)
- Vaccination against hepatitis A and hepatitis B is recommended for all susceptible persons with HCV infection
- Vaccination against pneumococcal infection is recommended for all patients with cirrhosis
- All persons with HCV infection should be provided education on how to avoid HCV transmission to others
Patients may have questions, or forget information later. There are a variety of resources available to help patients learn more about their disease. For example, the Centers for Disease Control and Prevention has several online brochures that can be given to patients, either electronically or printed out. Some of the brochures are targeted to special populations such as injection drug users and patients who are incarcerated — The incarcerated population with HCV is significant: Of the 2.2 million people in U.S. jails, an estimated one in three have HCV.
The U.S. Department of Veterans Affairs also provides a series of patient-oriented brochures that highlight special considerations for the veteran population with HCV. These include topics such as depression, anxiety, nutrition, the possibility of signing up for HCV clinical trials to access treatments, and cautions relating to “alternative” treatments. Some veterans may have anxiety or anger around how they got HCV, possibly in traumatic situations, and there are also resources available to help address these issues.