What is important to know when providing a diagnosis? What are the next steps?
Key takeaways:
- Understanding the importance of a person’s experience when diagnosed with hepatitis B is key to improving the management of people living with hepatitis B in Australia.
- Only 72.5% of people living with hepatitis B in Australia have been diagnosed and only 26% of people are engaged in care. See information on barriers to care and how to support engagement in hepatitis B care here.
- It is vital to support patient understanding, provide the required clinical follow-up and provide support.
On this page
What should I consider when providing a new hepatitis B diagnosis?
A new hepatitis B diagnosis can be a shock for patients. There is a lot of new information to take in, and it can be overwhelming. Sometimes patients are in denial. As a clinician there is a lot you can do to help with this.
As the clinician conveying the test results, you are responsible for ensuring that the person receiving the result can understand its implications and address the issues that the result raises.
Remember these key points when providing a diagnosis:
- Results should be given promptly and in person.
- Confidentiality must be upheld. Do not have family members present (unless the patient has requested it).
- Be sensitive to the person’s culture, gender, language and literacy level.
- If required, use a professional interpreter as required, not family member. The Translating and Interpreting Service (TIS) National is available on 131 450. It should be used if there is any doubt regarding understanding. Family members should not be used as interpreters to maintain patient privacy and ensure the accuracy of information being provided
- Schedule a follow-up appointment to check understanding and answer further questions.
- Information on prevention and transmission of hepatitis B can be important to share to alleviate patient concerns. Further information can be found here.
- For patients of childbearing age, it is important to address hepatitis B and pregnancy, reassuring them that this can be well managed. For more information see here.
“I had my husband sitting next to me when the doctor told us I had hepatitis B. I will never forget that look of disgust he gave towards me.” – Community member with lived experience of hepatitis B
“It was so shocking to hear I had hepatitis B when I’ve worked so hard to keep fit and healthy – I just couldn’t believe I’ve been living with this for so long and never knew as I never felt unwell in my life!” – Community member with lived experience of hepatitis B
“My mind just blanked out after the doctor told me the diagnosis. I didn’t end up taking in much of what was said in the consult.” – Community member with lived experience of hepatitis B
It is important to note that some people may have been given a diagnosis overseas but not told about the importance of monitoring
The teach-back method is a valuable conversational tool that can be used to check a patient’s understanding of important information, especially when working with an interpreter. It involves asking the patient to repeat information you have told them. Some phases you might use include:
- “I have given you a lot of information today and want to make sure I have explained clearly. Can you explain what you understood about the next steps?”
An example of how to use the teach-back method can be found here.
When discussing test results, be mindful that people may misinterpret the terms 'positive' and 'negative'. People may not have heard of hepatitis and may confuse it with other viruses including HIV.
“Try to use each face-to-face consult with a patient with chronic HBV as an opportunity to teach them about their diagnosis and the indications for treatment.
Teach-back method and visual aids, improve patient’s understanding of their diagnosis, and are more likely to feel in control and participate in regular surveillance.” – Liver Nurse | Regional Victoria
Quick Links
Hepatitis B Testing Policy: Conveying hepatitis B test results | Website | ASHM
B Positive: Hepatitis B virus testing and interpreting test results | Website | ASHM
Teach-back technique | Video | North Western Melbourne Primary Health Network
Detailed Information
Australian consensus recommendations for the management of hepatitis B infection | see page 35 | PDF | Gastroenterological Society of Australia
Translating and Interpreting Service | Website
For further training on providing a hepatitis B diagnosis, complete the Clinical Extensions of Hepatitis B: Communicating a diagnosis module | Online learning module | ASHM
What are the next steps?
After a hepatitis B diagnosis, it’s important that you, as a clinician, have the confidence and understanding to know what comes next.
The Hepatitis B diagnosis: Next step checklist provides clear guidance to primary care clinicians on the next steps of assessment after hepatitis B diagnosis.
Baseline screening to assess phase of disease:
• HBeAg and anti-HBe
• HBV DNA (quantitative) also known as viral load
• Full blood count
• LFT, INR and alpha fetoprotein (AFP)
• Liver ultrasound
Extra tests and screening:
• Check for co-infection by testing for HAV, HCV, HDV and HIV
• Discuss vaccination if susceptible to HAV and discuss transmission and prevention of BBVs
• Screen household contacts and sexual partners for HBsAg, anti-HBs and anti-HBc
Assess liver fibrosis–cirrhotic status:
• Look for signs of cirrhosis
• Do a non-invasive assessment of fibrosis: serum biomarkers such as AST to Platelet Ratio Index (APRI) (1.0 or less indicate that cirrhosis unlikely). This uses serum markers to determine the likelihood of liver fibrosis and cirrhosis. The APRI calculator can be found here.
• Do a FibroScan assessment if available (> 12.5 kPa is consistent with cirrhosis)
Quick Links
Hepatitis B diagnosis: Next step checklist | PDF | ASHM
B Positive: Clinical assessment of patients with hepatitis B virus infection | Website | ASHM
Decision making in hepatitis B | PDF | ASHM
Detailed Information
Australian consensus recommendations for the management of hepatitis B infection | see section 6.6, page 36 | PDF | Gastroenterological Society of Australia
APRI calculator | Website | University of Washington
How do I order a Transient Elastography or FibroScan®?
Transient elastography (TE) or a FibroScan can be ordered either:
• directly from a tertiary hospital as a stand-alone request
• through referral to a gastroenterology or infectious diseases outpatient department
• through a private provider (with varying cost to patients)
• through community outreach or a community-located machine (community access is limited).
Ask your local referral centre on HealthPathways for a referral form. If you use a private provider, be aware there will be a cost as there is no Medicare rebate for the test.
Referral forms are available from tertiary service providers at most Melbourne hospitals.
Fibroscanners are used by the regional Integrated Hepatitis C Nurses (IHCNs) on a rotational roster. Please check with your local IHCN as to the availability of the fibroscanner in your region. See here for information on IHCNs and a contact list.
Note: A few private radiology providers are offering ultrasound-based shear wave elastography (SWE), which is less well validated. A FibroScan is preferred if available.
You do not have to wait to get a FibroScan to initiate antiviral treatment if the person is eligible for treatment based on other criteria.
What is my role in contract tracing?
Note: a newly diagnosed infection may not be newly acquired
- Management of a person newly diagnosed with hepatitis B should extend, with their consent, to the counselling and testing of family members and close household and sexual contacts, and vaccination of these people who are not infected and non-immune.
- In the rare event that this is a recent infection, it is suggested that you trace contacts 6 months before the onset of acute symptoms. Discuss with your local public health unit.
Patients should be encouraged to discuss their diagnosis with close contacts. However they may want advice and support from their clinician on how to approach this.
It is tricky in shared households when the person has a fear of disclosure. Patients are not required to disclose to housemates but should be encouraged to take steps to reduce risk of transmission.
Find further resources including steps in contact tracing and ways of notifying contacts here.
Quick Links
Australasian contact tracing guidelines: Hepatitis B | Website | ASHM
Detailed Information
Hepatitis B Testing Policy: Conveying hepatitis B test results | Website | ASHM
What notification requirements are there?
Hepatitis B is a notifiable disease in every Australian state and territory including Victoria. This means it is mandatory for both healthcare practitioners and pathology services to notify any new confirmed case. Pathology services will automatically notify, whereas clinicians must notify using the forrm linked below to collect further information.
It is important to discuss notification with the patient during pre-test counselling. Advise them that if there is a diagnosis, you will need to collect certain information to inform the Department of Health.
Mandatory notification does not breach a patient’s legal right to privacy, although patients should be informed about the purpose and what, if any, action the health department is likely to take. It is suggested that you advise your patient the health department may contact them if they consider it necessary for public health reasons.
In Victoria, notification of hepatitis B must be made in writing within 5 days of diagnosis. This can be done either online or via fax.
It’s useful to ask for consent from the patient at the time the form is submitted so the local public health unit (LPHU) can contact them.
Once notified, the health department will manage public health follow-up or allocate the case to the relevant LPHU.
LPHUs work closely with their local health services, primary and community health services, other state government agencies and local governments and communities. This community work includes follow-on from the Primary Care Partnerships (PCP) Program.
Although LPHUs are led by health services, they do not provide urgent medical care or treatment advice. LPHUs may, however, be a source of information regarding linkage to care within your region. Click here for more information and links to your LPHU.
Quick Links
B Positive: Privacy, confidentiality and legal requirements | Website | ASHM
Notification of hepatitis B | PDF | Victorian Government Department of Health
Local Public Health Units | Website | Victorian Government Department of Health
Detailed Information
Australian consensus recommendations for the management of hepatitis B infection | see page 35 | PDF | Gastroenterological Society of Australia
Notification of hepatitis B | Online form | Victorian Government Department of Health
What are the public health considerations of a new diagnosis?
The local public health unit (LPHU)* may contact you, as the clinician who ordered the test resulting in the diagnosis, to offer support and advice regarding linkage to care and to determine any risk factors of public health concern.
Regarding risk to others, a diagnosis is relevant to the patient’s family, who may have had an increased chance of being exposed to hepatitis B and intimate, sexual partners who, if unvaccinated, are at risk of exposure.
The exception is health workers who perform exposure prone procedures (EPPs). In these cases, seek specific advice from an infectious diseases specialist in this area. Further information can be found here.
In most settings where universal precautions are used there is no requirement for disclosure. A hepatitis B diagnosis can often lead to stigma and shame, and unnecessary disclosure can result in discrimination in workplaces or in educational institutions. For more information on disclosure see here.
*Victoria’s LPHUs work with the Department of Health administering programs for disease prevention and population health. This includes responding to infectious disease case investigations, outbreaks and public health programs that impact their region. On notification of a condition, the department will manage public health follow-up, or allocate it to the relevant LPHU.
Quick Links
Australian National Guidelines for the Management of Healthcare Workers Living with Blood Borne Viruses and Healthcare Workers who Perform Exposure Prone Procedures | PDF | Communicable Diseases Network Australia
Infectious disease – guidelines and advice | Website | Victorian Government Department of Health
Local Public Health Units | Website | Victorian Government Department of Health
How do I support my patients with information about a hepatitis B diagnosis
“My doctor just told me I had hepatitis B but that I was a ‘healthy carrier’ so I didn’t need to worry. So I just forgot about it as I thought it meant I didn’t need to do anything about it. Later on I developed liver cirrhosis. I didn’t know there was medication I could’ve taken to reduce my viral load and help protect my liver”.– Community member with lived experience of hepatitis B
“I was told there is no cure for hepatitis B so I would just have to live with it. After the first appointment nothing more was ever mentioned about it, so I thought I was fine just carrying on as usual, until I met another person with the same condition and was so surprised to hear they had regular monitoring with ultrasounds and blood tests. Why was I any different?” – Community member with lived experience of hepatitis B
“I know someone with hepatitis C who got it from using IV drugs so how could I have got hepatitis? Is B the same as C? It’s so confusing.” – Community member with lived experience of hepatitis B
“I don’t have any symptoms so the virus can’t be doing much damage. Why should I be bothered doing all this monitoring?” – Community member with lived experience of hepatitis B
The point of diagnosis is a vital point in the care of a person living with hepatitis B. It can shape their engagement and access to ongoing care and treatment and affect their sense of wellbeing.
What can I do to support my patient to engage in hepatitis B care?
- Provide clear information using a qualified interpreter
- Organise follow-up appointments to answer further questions
- Use teach-back to check understanding – see further information here.
- Be aware of cultural background, health beliefs, history of trauma and social history and supports
- Be sensitive to past experiences of health care e.g. discriminatory behaviour
- Be aware of current or past migration issues, fears and experiences
- Be aware of experiences or perceptions of health from country of origin
- Provide written resources or go through relevant resources with an interpreter
- Understand that it is rarely necessary to organise tests urgently – you have time to engage and understand the patient’s perspective as this will be often a lifelong diagnosis
See below for a list of relevant community resources.
Further Information
This plain English resource is designed to support health workers discussing chronic hepatitis B with patients, including refugee and migrant communities: The Hepatitis B Story (multiple languages available) | Website & PDF | St Vincent’s Hospital Melbourne
Hepatitis B: It’s family business (multiple languages available) | Website | Multicultural HIV and Hepatitis Service
Hepatitis B Community Forum | Online forum | Hepatitis B Community.org
Hepatitis B Voices Australia | Website
