Ray Poll is a specialist hepatitis C nurse who works for the Sheffield Teaching Hospitals Foundation Trust. In this blog, written for other healthcare professionals, he writes about hepatitis C, its consequences for patients and the challenges it presents to the NHS.
Improving the Patient’s Journey
One of the biggest challenges that we continually face in the field of hepatitis C is encouraging patients at risk of infection to come forward for testing, when they may be experiencing no symptoms. The recent Health Protection Agency report shows that although newly diagnosed cases of hepatitis C have been increasing year on year, (6% rise between 2007 and 2008, and 50% rise compared to 2003i), substantial numbers of individuals still remain undiagnosed.
Testing for hepatitis C should be accessible, straightforward, and accurate, so as not to discourage those at risk from coming forward. In our Trust in Sheffield, we set about exploring solutions to strengthen the patient pathway, providing prompt diagnoses while acknowledging patients’ fears and anxieties. Areas we examined included enhancing the testing protocol, ensuring new referrals continue to be seen as soon as possible and promoting information about the specialist service.
Traditionally, patients would need at least two separate blood tests to determine whether they were currently infected with hepatitis C and if so, to identify which genotype of the virus they had. This process could take weeks as the various tests were completed, proving a very stressful time for the patient while they waited for the results.
The initial blood sample, which was tested only for the presence of hepatitis C antibodies, could take place at a number of different locations such as in general practice, drug services, genito-urinary medicine clinics, antenatal services and various hospital departments. If the result were positive, this would not determine if the patient was currently infected, but only indicate past exposure to the virus. Since approximately 25% of patients exposed to hepatitis C clear the infection naturally, a second blood test for hepatitis C RNA would be needed to assess whether the virus was still present.
After receiving positive antibody results, patients would then be referred onto a specialist hospital team for further assessment, to establish current or past infection and to identify the strain (genotype) of the virus. Consequently, patients were finding themselves being referred to the hospital up to three or four weeks after their initial test without being clear of their diagnosis and whether treatment should be considered. Outcomes can vary greatly according to the infecting genotype. For patients with genotype 1 infection approximately 45% clear the infection, but this rises to 80% in patients with genotypes 2 and 3. It is important that people with the virus are given this information as early as possible.
Over the past 12 months, services like ours in Sheffield have refined the screening protocol with our colleagues in the laboratory to automatically test for the virus (hepatitis C RNA) in the first sample, if antibodies are present. This approach to testing allows the requesting clinician to inform the patient if infection is present and to advise on the course of possible treatment at a much earlier stage.
To facilitate the correct management of the patient, the laboratory has added concise comments at the end of the blood test reports. For example, if the patient is hepatitis C RNA and antibody positive: “Consistent with chronic hepatitis C infection – suggest referral to a specialist for the clinical management of hepatitis C infection”. While if the patient is hepatitis C RNA negative but antibody positive: “This patient is hepatitis C antibody positive and RNA negative. Please send a repeat sample to confirm absence of viraemia. If confirmed, this means the patient had hepatitis C infection in the past and has now cleared and does not require further assessment. Hepatitis C antibody does not give full protection against a future infection with hepatitis C.”
Another successful development around diagnosis and referral for consideration of treatment is the circulation of our hepatitis clinic leaflet to healthcare professionals in primary and secondary care. The leaflet was produced to answer common questions patients may have before their hospital appointment. You may wish to use this as a reference point if you are producing one in your local area.
i ‘Hepatitis C in the UK - The Health Protection Agency Annual Report 2009’ summarises current knowledge about hepatitis C and the action being taken to tackle the infection. To see a full copy of the report, visit: www.hpa.org.uk/hepC2009
The Frontline Fight
The role of primary healthcare professionals in tackling hepatitis C
General practitioners (GPs), practice nurses, and other primary care colleagues are in the community playing a vital role in identifying patients at risk of hepatitis C. In the Sheffield Hepatitis C clinic, the majority of patients we see are referred to us either through the local drug services, or GPs (including those who have a specialist interest in drug misuse). This combination of primary care settings has proved to be highly effective in our area for identifying current drug users who are significantly at risk of hepatitis C through sharing drug injecting equipment.
I recently completed an audit of seven GP practices in the Sheffield area to identify the risk factors of patients that were being tested, and of those testing positive, to assess if they had been referred to the clinic for assessment and possible treatment. To carry out the audit we collated data from our local virologist on the number of patients tested for hepatitis C across Sheffield during a one-year period (2007 to 2008). We selected the seven practices from this data to include those with both high and low prevalence rates for hepatitis C in those tested, i.e. those with positive results and those with none. The reasons why patients were being offered testing were examined, to see which risk factors were most common.
What wasn’t a surprise was that the majority of positive tests were picking up individuals with a recent and substantial history of injecting drug misuse. Other risk factors for patients who tested positive included medical treatment abroad and experiencing symptoms. However the reality of hepatitis C infection is that it is not just current drug users who are at risk. In England, it is estimated that about 200,000 people are chronically infected with hepatitis C and many remain undiagnosed. Some of those people who are unaware of their infection may have shared intravenous drug equipment perhaps only once or twice 20 years ago. As most people who carry the virus don’t experience any symptoms for many years, they are unlikely to actively seek a test or advice.
Former injecting drug users, including those who have only experimented once or twice, will not be engaged with drug services and are much more difficult to identify. It is important that GPs, practice nurses and other primary care colleagues are able to identify at-risk individuals in their practices by making sensitive enquiries into their patients’ histories. Having information leaflets displayed prominently in clinics, surgeries or health centres can help to open a conversation about hepatitis C testing. We know that hepatitis C often carries a stigma because of the association with injecting drugs. We need to consider and make patients aware of other transmission routes, such as people born overseas who may have been exposed to re-used needles or given blood contaminated with hepatitis C. This helps to avoid people feeling they are simply being labelled as a previous injecting drug user.
Our audit also gave us an opportunity to send out a message to local GPs, highlighting that although hepatitis C testing and diagnoses were increasing in Sheffield, there were still many undiagnosed individuals. Along with those who had shared drug equipment, we also encouraged GPs to offer testing to patients born overseas in countries with a high prevalence.
More information for Primary Health Professionals
On the NHS hepatitis C awareness website for healthcare professionals – www.nhs.uk/hepatitisc/hcp - there are downloadable information leaflets for healthcare professionals and their patients. These include a Quick Reference Guide on hepatitis C for primary care, which is a one-page guide on testing, diagnosis and treatment of hepatitis C. It can also be ordered in its print version from the DH orderline (www.orderline.dh.gov.uk/ 0300 123 1002).
The website for the general public – www.nhs.uk/hepatitisc - hosts videos on the prevention, diagnosis and treatment of hepatitis C, featuring people who have lived with the virus. These can help give healthcare professionals an idea of the kinds of support patients may require from testing through to treatment.
Happy anniversary – dispelling the myths about treatment
It is now twenty years since hepatitis C was identified as the virus responsible for non-A, non-B hepatitis and on the eve of World Hepatitis Day 2009, it’s worth examining the extent to which we’ve built our knowledge of this formerly ‘silent virus’. We all know the intrinsic challenges faced in merely identifying a patient at risk of the virus, but I wonder whether there’s more we can do to build awareness of the most important fact for patients at risk of infection or those already diagnosed to know – that treatment is available and there’s a good chance that it will work.
‘But treatment is pretty unsuccessful, right?’
As many of you will know, the National Institute for Health and Clinical Excellence (NICE) recommends a combination of pegylated interferon alpha and ribavirin for the treatment of patients with mild chronic hepatitis C. The treatment can successfully clear the virus, on average, in up to 55% of patients overall, but success rates can be around 80% for some strains of the virus. Wouldn’t you consider a potential success rate of 80% to be, well, pretty good?
I can also recollect conversations with patients who have expressed worries about the effectiveness of treatment. Some people believe that treatment can only slow down the damage to the liver, rather than clearing the virus and preventing liver disease. But for patients who successfully clear the virus and achieve a sustained response six months after the completion of treatment, clearance of the infection appears to be apparent in more than 95% of patients.
‘But surely it can’t be given to patients undertaking treatment for substance misuse?’
I was recently referred a patient from a substance misuse service who was diagnosed with hepatitis C several years ago and he had no idea that there was treatment for the virus. He was on a script of methadone to help treat his drug use and mistakenly some health professionals and patients believed this to be a contraindication for hepatitis C therapy.
‘I have heard it is like chemotherapy’
Many of the patients I see in the hospital clinic have heard of some of the treatment horror stories and anticipate they will suffer badly with side-effects. They are reassured to know that some people experience none or only few side-effects; they vary in severity from one person to another; and they are usually well managed with the support of the specialist nurse and other members of the team.
For example, in the early stages of treatment many patients experience ‘flu-like’ symptoms but these usually subside after one to two weeks as the body becomes used to the interferon. The symptoms are often minimised by taking the injections with paracetamol before bed and patients are encouraged by the specialist nurse to drink lots of water.
A spectrum of gastrointestinal complaints has also been associated with treatment, including nausea, vomiting and weight loss. The patients are weighed at their regular hospital visits and once an undiagnosed condition has been ruled out, they are helped with the usual supportive measures. For example, patients are encouraged to eat smaller and more frequent meals and reminding the patient to take ribavirin with food may also help reduce gastrointestinal complaints.
Fatigue is the most commonly reported side-effect among patients. Exercise is a well recognised method of reducing fatigue in some clinical settings and hepatitis C is no exception. The specialist nurse will encourage patients to undertake moderate exercise and recommend regular short walks. It is also important to rule out treatable medical causes of fatigue, such as anaemia or hypothyroidism.
Perhaps one of the most emotive side effects of interferon is the impact on the patient’s mood. It is hardly surprising that feeling low is a common experience, even before starting hepatitis C treatment. The specialist nurse will closely monitor patients for indications of depression throughout the course of treatment and provide emotional support where necessary. Reassuring the patient that the condition is common, may be caused by interferon, and is not a personal weakness may reduce any sense of panic or concern and encourage early reporting of symptoms and successful intervention. In some cases, depression during therapy can be treated with medication so that people can continue to take their full course of hepatitis C treatment.
Health professionals can play a vital role in helping to challenge the myths surrounding treatment and encourage patients to be prepared for some of the common side effects.
A testing time
Last week, a man was referred to my clinic for a hepatitis C test. During our discussion, he talked about his worries around the effectiveness of treatment. He believed that treatment could only slow down the damage to the liver, rather than clearing the virus and preventing liver disease. This misunderstanding could have delayed or stopped him from seeking testing and treatment.
Another common misconception arising from discussions with patients is that treatment can't be started if the patient is on a methadone script. This isn't true, and it may delay a patient from seeking testing and treatment for years, which could potentially reduce their chances of clearing the virus.
These examples are not isolated incidents, but they indicate the important work that healthcare professionals need to do to help patients understand the options around treatment. The pre-test discussion is the ideal time to do this.
There are resources already out there to help nurses and GPs with these discussions, such as the Department’s ‘Quick Reference Guide for Primary Care’ and the ‘Essential Information for Professionals and Guidance on Testing’. You can download these from our Resources for you section.
Having had a few of these discussions myself, I hope that my experiences and suggestions might help others too.
Setting expectations around the pre-test discussion
I have often heard pre-test discussions referred to as pre-test counselling, which is a legacy of the early years of HIV testing. In my experience, referring to ‘counselling’ can give the impression of a ‘heavy session’ with trained counsellors.
This in turn may cause trained healthcare professionals to feel ill-equipped in seeking informed consent, and may put patients off seeking testing. However, during some pre-test discussions a healthcare professional may use the counselling skills, particularly when patients are anxious. So it's important to keep the environment relaxed, and to make sure the patient feels free to ask questions. In order for the latter to happen, the discussion needs to take place in a private setting.
Establish a confidential climate
Making the patient feel comfortable and providing a confidential setting is also important when establishing the date of the last risk activity. In patients whose exposure has been recent and whose first test is negative, the hepatitis C antibody test should be repeated three months after the last possible exposure in order to avoid misdiagnosis. This helps to ensure that the three-month ‘window period’ for the development of antibodies is taken into account.
For some patients, this could also be a good time to talk about harm reduction, such as safer injecting practices, immunisation against hepatitis A and B, and perhaps keeping alcohol intake to a minimum. It's generally good practice to screen for other blood-borne viruses (HIV and hepatitis B), as they share common routes of transmission, although this may depend on the nature of the patient’s risk.
Support at all stages
A hepatitis C test is a crucial event, and a patient may feel worried about the impending results. It’s important to consider a support network for the patient at an early stage. It may be useful to direct them to local and national support services. The Hepatitis C Information Line (0800 451 451) gives patients information about hepatitis C transmission, testing, diagnosis and treatment. The Hepatitis C Trust Helpline (0845 233 4424) is staffed by people who have experience of hepatitis C, and provides support for those diagnosed.
What test to use
Finally, after the discussion and after informed consent has been given, a simple blood test is usually taken. However, some patients’ veins may be in poor condition, or they might be frightened of needles, so you may want to consider other types of initial screening, such as oral swabs. If this test indicates that the patient might have hepatitis C, a diagnostic blood test is then necessary. Dried blood spot testing may also be available.
We often hear about the large numbers of people who have undiagnosed hepatitis C infections. If managed effectively, this crucial stage of testing and discussion with patients can help ensure that there are no mythical barriers to getting the help they need.
Why history matters
In my work as a hepatitis C specialist nurse, I meet the different types of people whom the virus can affect. Hepatitis C doesn't discriminate, and anyone can become infected if they're exposed to it. As hepatitis C infection doesn't usually cause symptoms for many years, the challenge for us as healthcare professionals is to identify those at risk of infection and offer testing, so that those who are infected can benefit from specialist treatment and care.
The type of people I see in an average week in the hepatitis C clinic can vary considerably. Most recently, they’ve included:
- An employed family man with a past history of injecting drugs. His girlfriend was aware of his diagnosis and was tested at the antenatal clinic during her pregnancy
- A man in his 60s, originally from South Asia, who became infected after receiving medical treatment in his home country
- A married woman who injected drugs over a period of one year, 25 years ago. She was worried that her diagnosis might mean her daughter would have to stop her training as a health professional because she lived with her, and people might think she could become infected
- An unemployed man who was continuing to inject drugs while receiving a "script" from the local drugs service. He'd attended the clinic several years ago but lost contact and had been re-referred by the drugs service
On first impression, these people have little in common except that they're all living in the UK and have been infected with hepatitis C. Many aren't obvious candidates for hepatitis C infection, until you enquire about possible past exposures to the virus.
Health professionals often ask patients about smoking and how much alcohol they consume, but we're unlikely to enquire routinely about previous drug use. Similarly, it can be difficult to ask about the safety of medical practices in a patient’s country of origin, as we don’t wish to risk offending the patient.
I find that patients often respond best to questions about their risks of hepatitis C infection if:
- You explain why you're asking the questions
- The questions are asked in a sensitive manner
- The consultation is conducted in a confidential setting
Posters and leaflets in appropriate languages that are visible in waiting rooms or clinics may help to prepare people for enquiries about their lifestyle choices. Leaflets can also provide information for patients who choose not to disclose all the details of their past, but want to be tested.
The Department of Health has produced a lot of information and resources for nurses and other healthcare professionals, including:
- A quick reference guide to hepatitis C
- Patient leaflets (available in nine languages)
The choice of approach is crucial. Evidence has shown that a patient’s quality of life may deteriorate if their condition is labelled as "chronic" by a healthcare professional. It's important that people understand the treatment available to them at the point of diagnosis, and that they're given information regarding necessary lifestyle changes, such as stopping their alcohol intake. Clear messages about transmission routes need to be given with reassurance that the virus cannot be passed via normal social contact, such as shaking hands.
Patients also need to feel that they can discuss their anxieties openly with healthcare professionals. Listening and allowing people to talk is just as important as explaining the medical implications of the virus. The experiences of those who no longer inject drugs and who contracted the virus a long time ago differ dramatically from those who are still injecting drugs. For the former, giving information about specialist support services, telephone helplines such as the Hepatitis C Information Line (0800 451 451), and useful websites have been helpful. For the latter, I have offered groups run by the Drug and Alcohol Action Team.
An online questionnaire is now available to assist people in assessing their own risk (follow the 'Hepatitis C website' link at the top right of this page). The benefit of self-assessment is that it prompts patients to consider and seek advice about testing anonymously. It may also prepare them for enquiries about their past and current lifestyle before they seek advice from a healthcare professional on testing for hepatitis C.
Know your A, B and C
Being in the nursing profession means that every day is different from the next. For example, I recently attended the Nursing in Practice Conference in London to speak about hepatitis C and the role that healthcare professionals, particularly nurses, can play in its diagnosis and treatment.
Before I started the presentation, two members of the audience said they already knew about hepatitis C, but the others didn’t have much knowledge. I wanted to make sure I was as clear and concise as possible, so that the audience felt much more knowledgeable about the virus.
Part of my presentation focused on the differences between hepatitis A, B and C. In my experience, many nurses and patients being tested get confused between the three types of viral hepatitis, especially when it comes to immunisation. Without the correct knowledge, the consequences could be very serious. There are vaccines for hepatitis A and B, but not for hepatitis C. So people may think they're protected by a vaccine that doesn’t exist.
Hopefully, you’ve seen or heard the latest adverts to raise awareness of hepatitis C, and to encourage those at risk of infection to seek advice from their doctor or nurse about the need for testing. In support of this, I wanted to raise awareness of the virus with the nursing profession and help colleagues continue developing their knowledge so that they're equipped to advise their patients. I think healthcare professionals should have the latest information about hepatitis C, and I was honoured to provide this for my peers.
At the end of my presentation I was asked a crucial question: what role can nurses in primary care play in meeting the challenge of hepatitis C? As with other serious infectious diseases, nurses can assist people by providing information and advice, and also help them access confidential testing if they may have been at risk of infection. It's also vital that we help those infected with hepatitis C to use specialist treatment services, because effective drug therapy is available. We can also help patients make positive lifestyle changes.
What to do when there is no clue
Hepatitis C is commonly known as a 'silent virus' because patients may experience no symptoms for many years, and when they do, the symptoms may be non-specific.
This makes it difficult to diagnose and means that it's essential to explore whether patients may have been at risk of infection in the past.
I’ve had people connecting varying maladies with the virus, such as abdominal pain and frequent headaches. This is because many of them don't realise that there are often no symptoms. And if symptoms are present they differ from person to person.
This week, a woman came to the clinic where I work and asked if her increasing tiredness was caused by the virus. I explained to her that lethargy is common, has many causes and, on its own, is not an indicator of hepatitis C. Exploring a range of possible reasons for the symptoms, rather than making assumptions, is key.
However, the hardest task is to pinpoint those patients who have no symptoms at all.
I find that the majority of those diagnosed with hepatitis C are current or former injecting drug users who can feel perfectly healthy for many years. Many of these may have been infected by injecting drugs in an experimental phase in their youth, or even just once or twice in the past, and may be reluctant to admit it. Sensitive probing can sometimes uncover these facts.
Other patients may have been at risk from:
- Having a blood transfusion before 1991, or being given blood products before 1986
- Receiving medical and dental treatment in countries where equipment may not have been sterilised adequately
- Having unprotected sex with someone who has the condition
- Tattoo, ear or body piercings, using unsterile equipment
- Acupuncture or electrolysis, using unsterile equipment
- Sharing toothbrushes and razors that have been contaminated with infected blood
- There's also a small risk of an infected mother passing it on to her baby
It’s important to stress to the patient that hepatitis C can be transmitted in a number of ways, as outlined above, and it's not only related to injecting drug use. Some patients with a past drugs history are worried about what friends and family may think if they admit to being infected. It’s helpful for them to know that hepatitis C can affect anyone, of any background, as this reduces the stigma.
So in diagnosing hepatitis C patients, it's important to explore past behaviours and experiences that may have put a patient at risk of infection.