Hepatitis C: An In-Depth Guide
Hepatitis C pre- and post-test counselling information
- Why is hepatitis C counselling and education important?
- Are hepatitis C test results reported to public health?
- What is an informed consent process?
- What types of tests are used?
- How many sessions are necessary to complete the testing process?
- How can counselling information be adapted to the individual?
- Suggestions for discussion topics during different phases of the testing process
Currently, no formal pre- and post-test counselling guidelines for hepatitis C testing exist in Canada. This article presents information that healthcare workers may find helpful when counselling people through the testing process.
Why is hepatitis C counselling and education important?
The primary goal of hepatitis C counselling is to offer support to people as they move through the testing process, regardless of their test result. Through counselling and education, frontline workers can provide:
- an informed consent process
- information about hepatitis C, such as prevention, treatment and liver care
- emotional support to prepare for the test result
- encouragement to return for test results
- referrals to healthcare and other services in the community
Are hepatitis C test results reported to public health?
Hepatitis C is a reportable disease across Canada. This means it is legally required that a positive hepatitis C diagnosis is reported to local public health officials. The basic personal information that is reported may vary by province or territory but in general the diagnosis and the person’s name, birth date and contact information would be included. Disease reporting is used to monitor infections in the community and inform prevention strategies.
Case definitions for reporting differ from province to province. A case definition is the criteria used by public health officials to define a disease. In most provinces and territories, the case definition for hepatitis C is a positive hepatitis C antibody test. Local public health offices contact people who have a positive test to provide additional information, linking to healthcare and recommendations for further testing. They may also ask for the names and contact information of other people who might have been exposed to hepatitis C to contact them about getting tested. Different options exist for telling these people, and it is possible to do so without identifying the person’s status.
The information provided to public health officials is confidential, as is all medical information.
Anonymous testing for hepatitis C is not available in Canada.
What is an informed consent process?
An informed consent process is an important part of testing. The goals of an informed consent process are to ensure that the person:
- consents to being tested
- understands the steps and consequences of testing, including reporting of results to Public Health
- receives counselling before and after the test to prepare for the test and results
What types of tests are used?
Hepatitis C testing involves two different tests:
- Hepatitis C antibody test
- Hepatitis RNA test or hepatitis C core antigen test
For more information on the types of tests used in hepatitis C testing, see Diagnostic tests.
How many sessions are necessary to complete the testing process?
When hepatitis C testing uses the antibody test followed by the RNA test, up to three sessions may be needed, including:
- Counselling before the antibody test and a blood draw for the antibody test
- Counselling about antibody test results, and, if the antibody results are positive, a second blood draw for the RNA test
- Counselling about RNA test results
When hepatitis C testing uses the antibody test followed by the core antigen test, two visits are often sufficient:
- Counselling before testing, then a blood draw for the antibody test, and, if needed, core antigen testing (both tests can be done on the same sample)
- Counselling about antibody and core antigen results
It is important to encourage people to return for their test results at all stages of testing.
How can counselling information be adapted to the individual?
Some people find it difficult or overwhelming to go through the testing process, be open to pre- and post-test counselling and act on information provided through the counselling. Moving through these steps can require a degree of stability, access to resources, social support and self-esteem.
Some people get tested regularly for hepatitis C and may know a lot about the virus. These people may not need a lot of information throughout the process.
It is important to individualize both the amount and type of information and how it is presented to the person on the receiving end.
Be aware of issues such as:
- Is the person overwhelmed by the information?
- Does the person want more information or less?
- Does the person need extra support to follow up with the next phase of testing? How can they connect with organizations that provide this support?
- Does the person need extra support to follow up on recommendations discussed during a counselling session? How can they connect with organizations that provide this support?
At each stage in the testing process, it is important to allow time for people to ask questions.
For information about organizations that provide services such as hepatitis C care, counselling and practical assistance (such as housing) in a particular region, see HCV411.ca
Suggestions for discussion topics during different phases of the testing process
Pre-counselling for hepatitis C antibody testing
- Review any prior history of hepatitis C testing, counselling and knowledge level of the disease as well as hepatitis C treatment.
- Review what hepatitis C is, including modes of transmission (blood-to-blood contact).
- Explain that most people who have hepatitis C do not have any symptoms for many years.
- Review the relationship that hepatitis C has to getting other infections, such as HIV and other sexually transmitted infections (STIs). Recommending testing for HIV or other infections may be appropriate.
- Explain that testing is voluntary and confidential (anonymous hepatitis C testing is not available).
- Ask the person how they think they would respond if they found out they had hepatitis C. This can identify misinformation they might have and better prepare them for test results.
- Provide details on the type of testing to be done and what the results of both the antibody test and RNA test or core antigen test will mean.
- Explain that results should be expected within two to four weeks and delays do not necessarily indicate a positive test.
- Explain to the individual that if they were to find out they have hepatitis C there are very effective treatment options available that cure most people.
- Review the ways to prevent passing hepatitis C and other blood-borne diseases (including HIV and hepatitis B).
- Reassure and refer the person for emotional support while they wait for the results.
- If appropriate, discuss vaccination for hepatitis A and B and pneumonia and how to access it. Explain that there is no vaccine for hepatitis C.
Post-counselling for a negative hepatitis C antibody test
A negative antibody test result means the person does not have hepatitis C.
- Explain that it takes two to six weeks for a person to develop hepatitis C antibodies (known as the window period). If there were activities that might have passed hepatitis C within the window period, recommend repeat antibody testing six months after such activities. You may want to suggest that the person get tested regularly if they are vulnerable to getting hepatitis C.
- If the individual is immune compromised, recommend hepatitis C RNA testing to rule out the possibility of a false negative test result. This means the test result will be negative when a person is actually positive for hepatitis C antibodies
- Emphasize that a negative test result does not mean the person is immune to future infection.
- Provide information on how to prevent hepatitis C from passing from person to person.
- Encourage people to continue to access healthcare and other supports as needed, such as needle and syringe programs.
Post-counselling for a positive antibody test (before the RNA test)
A positive antibody test result means there is a possibility that the person has an active hepatitis C infection.
- Explain that they were exposed in the past and that the RNA test is required to assess if they have the hepatitis C virus in their body.
- Explore options for support that the person can access, both personally and through organizations or agencies, while they wait for the results and also if the RNA test comes back positive.
- Remind the person that if they were to find out they have hepatitis C there are very effective treatment options available that cure most people.
- Cover information on how the person will test positive for antibodies on future tests but that antibodies do not provide immunity to future hepatitis C infection and the person could get re-infected again.
- Discuss harm reduction strategies.
- If not discussed in previous counselling sessions, offer HIV and other STI testing if relevant.
Post-counselling after a negative RNA test or core antigen test (RNA or core antigen not detected)
If the RNA test results show no detectable virus, explain to the person that they have cleared the virus and do not have hepatitis C.
If the core antigen test is used and shows no detectable virus, some testing algorithms require a follow-up RNA test. This is because if the individual has a low hepatitis C viral load, the core antigen test may show a negative result, indicating that they do not have hepatitis C when they actually do (called a false negative). The RNA test is able to detect a low hepatitis C viral load and therefore can confirm the active infection.
- Recommend repeat testing to be done in six months to be sure there is no active infection.
- Review how the person can reduce the risk of hepatitis C infection, including the possibility of getting re-infected (hepatitis C antibodies do not provide immunity to the virus).
- Remind the person that there is no immunity to hepatitis C.
- Encourage the person to continue to access health services.
Post-counselling after a positive RNA test or core antigen test (RNA or core antigen detected)
A positive RNA test or core antigen result indicates that the person has an active hepatitis C virus infection. More time may be required in this session to provide support and education.
- Provide time for the person to absorb the test results.
- Discuss the impact of a positive result.
- Reassure and support the person in realizing that hepatitis C is a serious but manageable and curable disease.
- Review that there are hepatitis C treatments that can cure most people, have few side effects and are short in length (12 weeks for many people); discuss treatment access and treatment readiness.
- Tell the person that more testing will be done to monitor the infection.
- Review harm reduction principles and prevention so the person knows how to minimize the chances of transmitting hepatitis C to others and how to avoid getting a different genotype of hepatitis C and other infections such as HIV or hepatitis B.
- Talk about maintaining liver health and other healthy living options, including disclosure of hepatitis C status.
- Discuss and encourage a plan for medical follow-up and a plan for managing potential ongoing emotional reactions, including options for support. Be prepared with referrals, including reading materials, support services and treating physicians in the person’s community, if available. To order free resources about hepatitis C, visit CATIE’s Ordering Centre.