Hepatitis C infection is a serious disease, which can result in chronic ill health and early death. The best current estimate of the prevalence of hepatitis C infection in Britain is 0.5%.1 Hepatitis C is the leading cause of liver disease worldwide, and in the UK alone there may be as many as 250 000 infected individuals.1 Every GP may expect to have at least 10 hepatitis C positive patients on his or her list.
The infection can be transmitted to others, most commonly when injecting drug users share needles and other paraphernalia. Up to date figures show that vertical and sexual transmission are relatively uncommon; less than 5% of babies and less than 5% of regular sexual partners become infected.1 Needle-stick injury is a significant risk for healthcare workers and others. There is a 3-10% infection rate following needle-stick injury with a hepatitis C positive source.1
Up to 20% of individuals infected with hepatitis C virus will become virus-free without medical intervention, while 80% go on to develop chronic infection.
Many will experience chronic malaise and tiredness, poor concentration and depression. After 10-20 years approximately one in four will develop liver cirrhosis with its attendant complications and risks. Between 1% and 5% of those infected with hepatitis C will develop primary liver cancer.
Perhaps the two most important features of hepatitis C virus are that acute infection is often asymptomatic (or only minimally symptomatic, causing a flu-like illness), and that management, including advice to reduce alcohol consumption, specialist treatment with interferon and ribavirin, and health promotion to reduce transmission to others, can be very effective.2-4
Most people who carry the hepatitis C virus are unaware of the fact, and treatment that can reduce their chance of developing liver disease is therefore denied them. Effective identification and management of hepatitis C infected patients is therefore crucial.
Hepatitis C policy at St Martins Practice
For several years St Martins Practice has run a treatment programme for drug-using patients. We manage around 100 at any time and have a fairly high turnover rate. Many have injected drugs in the past, or are injecting at presentation, and are therefore at high risk of hepatitis C infection.
National figures estimate an infection rate of 30-60% among injecting drug users,1 and this is borne out closely by our own recent survey, which found that around 35% of injecting drug users managed by the practice tested positive for hepatitis C.
The practice has developed a policy for the management of hepatitis C infection. The focus of this is to offer all current or previous injecting drug users a test for hepatitis C at presentation, after appropriate preparatory discussion about the test and its implications. We then refer all patients who test positive to the hepatology service at St JamesÍs Hospital, Leeds for specialist assessment and treatment.
Audit aims and objectives
- Our audit aimed to establish critical information about the effectiveness of our policy, including:
- Rates of testing for hepatitis C in injecting drug users
- Percentage of positive tests
- Referral rates for patients testing positive
- Attendance rates for hepatology appointments
- Discharge rates from clinic for failure to attend appointments.
First data collection
A database search identified all injecting users receiving treatment at the time of the audit. Notes were reviewed to establish which patients had been tested for hepatitis C over the preceding 12 months, who had tested positive, and who had been referred to the hepatology clinic.
Hospital clinic letters were used to establish which patients had attended for assessment, and which had been discharged for failure to attend appointments. The results are shown in Table 1 (below).
|Table 1: First collection data|
Injecting drug users eligible for testing
The survey results generated much discussion in the practice. About three-quarters of eligible patients had taken up the offer of hepatitis C testing. We felt that patient choice was the reason why the remaining quarter had not been tested - many patients had simply declined the offer. We acknowledged that we might be able to encourage uptake by providing better information to patients before testing.
Similarly, a significant proportion of patients who had tested positive had refused the offer of referral, and we felt that providing information on the potential health benefits of referral and the processes they would be likely to encounter at the hospital was another possible area for improvement.
What seemed completely unsatisfactory, however, was the very poor rate of attendance for hospital appointments, with 91% of patients eventually being discharged for nonattendance. This presented two significant problems - first, much hospital time was wasted, and second, those patients with hepatitis C infection who had agreed to be referred were not receiving the long-term treatment they needed.
Changes resulting from the audit
After the audit, the practice met to decide how we could make our policy work better. As we saw evidence of significant benefits to patients from testing and referral, we focused on getting that information to patients in a constructive way.
Discussion led to several new strategies:
- We met our local consultant hepatologist and the specialist hepatology nurse to discuss our policies, and to establish more successful ways of working together. Figure 1 (below) shows the St Martins Practice and St JamesÍs Hospital joint protocol.
- We redrafted guidelines on pre- and post-test discussion about hepatitis C testing and included more information on the implications of a positive test in language accessible to patients.
- We expanded the role of our addiction therapist in the discussion and counselling. We planned to be explicit about the need for referral for patients who tested positive, and to explain the importance of specialist assessment and the nature and purpose of probable investigations and treatments.
- Post-test discussions with patients who tested positive involved offering emotional support, and reinforcing information about the implications of the test result and the potential of treatment.
- We restructured harm-reduction advice for patients who tested negative, including advice not to inject, or to inject safely, and produced a ïDonÍt inject; inject safelyÍ leaflet.
- Preparation for, and discussions after, testing became ïprocessesÍ lasting several appointments rather than ïeventsÍ.
- We worked with our specialist providers to improve the readability of written information to be given to patients before referral. Medical terms were changed for more easily understood phrases, for example ïa small sample of your liverÍ replaced ïliver biopsyÍ.
- We formed an addiction therapist-led hepatitis C monthly support group.
- We strengthened our pre-referral medical ïwork upÍ to include a full range of relevant blood tests, and arranged for the results to be sent automatically to the hepatology department before the first outpatient assessment, to ensure that the appointment had maximum value.
- We worked with the specialist service to develop a standard referral form, to ensure the transfer of good quality, standardised information.
- We agreed to check the patientÍs address at the time of referral. Some patients did not receive appointments because they had changed address (many drug users move frequently), or their mail was at risk of being opened by others, or they were functionally homeless. We arranged for the latter group to use the practice address for correspondence.
- We improved communication with the hospital services. The hepatology department agreed to offer our patients an appointment within 4 weeks, to ensure that they could be seen while they remained well motivated. The hospital also agreed to let us know the date and time of appointments in advance, so that we could encourage the patient to attend.
|Figure 1: Joint protocol for the management of HCV antibody positive patients|
|Figure 1 continued: Joint protocol for the management of HCV antibody positive patients|
Figure 2 (below) is an algorithm showing how we manage patients with hepatitis C.
|Figure 2: Algorithm for the management of patients with hepatitis C.|
Second data collection
Our policy changes focused particularly on the preparation of patients for referral and encouraging attendance at hospital appointments, therefore the second data collection concentrated on hospital attendance.
Referral data and attendance rates were analysed for the 3-month period after we implemented our new policies, and patients tracked for discharge for non-attendance for 6 months. The results showed a marked improvement in rates of attendance for a first assessment, and for longer-term engagement in the management of their disease (Table 2, below).
Table 2: Second data collection
Patients referred to hepatology
Injecting drug users are at high risk of infection with hepatitis C virus, and they may have particular problems in gaining access to care. Through our audit the practice learnt that simply referring our hepatitis C positive patients did not guarantee that they would receive the care they needed.
Through changes to our practice policies, particularly better sharing of information and more ïjoined-upÍ working with our specialist colleagues, we were able to ensure that a high percentage of patients from this potentially difficult group were able to gain access to care.
In July 2002 the Department of Health published a strategy to tackle hepatitis C infection, which aims to raise professional and public awareness of the disease.5 Two particular aims of the strategy are to promote testing for those at risk and to develop managed disease networks to provide accessible specialist assessment and treatment for people with hepatitis C infection. The work of St Martins Practice has been included in the document as an example of improving practice in primary care.
For further information, contact Angela Walker, Practice Manager, St Martins Practice, 319 Chapeltown Road, Leeds LS7 3JT (tel: 0113 262 1013, fax: 0113 237 4747, email: firstname.lastname@example.org).
- Department of Health. Hepatitis C: Guidance for Those Working with Drug Users. London: TSO, 2001.
- Sylvestre DL. Treating hepatitis C in methadone maintenance patients: an interim analysis. Drug Alcohol Depend 2002; 67(2): 117-23.
- Goldberg D, Burns S, Taylor A et al. Trends in HCV prevalence among injecting drug users in Glasgow and Edinburgh during the era of needle/syringe exchange. Scand J Infect Dis 2001; 33(6): 457-61.
- Hope VD, Judd A, Hickman M, Lamagni T et al. Prevalence of hepatitis C among injection drug users in England and Wales: is harm reduction working? Am J Public Health 2001; 91(1): 38-42.
- Department of Health. Hepatitis C Strategy for England. London: TSO, 2002.