Abstract
This review article outlines the salient points relating to the advantages and disadvantages around partner notification for hepatitis C testing.
Introduction
Partner notification is used routinely for tracing the partners of persons with sexually transmitted infections (STIs) including HIV, but its use in hepatitis C is not established, although a case can be made for it. In light of new guidance from the British Association for Sexual Health and HIV (BASHH), 1 this review article proposes specific parameters for partner notification in hepatitis C. We shall consider this question of contact tracing by first asking whether there is an unmet need.
Background
The number of persons diagnosed with hepatitis C infection in England up to 2010 was 85,565, although it is estimated that 161,320 persons are actually infected. 2 Further, less than 10% of those diagnosed have been treated. Approximately 90% of infections are attributable to injecting drug use. 3 Some people would have become infected many years ago from experimenting with injecting drug use on one or two occasions. 4 It is likely that many of these people remain undiagnosed and unaware of their infection. Further, many infected people are asymptomatic or have non-specific symptoms such as tiredness, malaise and loss of appetite, which could be put down to lifestyle. 5 Partner notification may help identify some of these people who are undiagnosed and asymptomatic, and who would otherwise not have been tested.
Although the amount of needle and syringe sharing has declined over recent years from 31% in 2000 to 21% in 2010, 3 there has been no such decline in hepatitis C prevalence among recent initiates (i.e. those who first injected in the preceding three years) with an overall prevalence of 18% in this group. 6 Also, a recent local audit found just under one-third of drug users attending a treatment service tested positive for hepatitis C following a previous negative test (Devey T, Wiffen S. Blood-Borne Virus Audit. Sheffield: Sheffield Health and Social Care NHS Foundation Trust, 2011, unpublished). Partner notification may uncover further infected persons who were previously negative. Thus we may conclude that there is an unmet need.
Hepatitis C can also be passed on through sex and from a mother to her baby, although these are less common (see Table 1).7,8 However, the rate for sexual transmission increases if the index patient is also HIV positive. 9 There has been an increased incidence of acute hepatitis C infection among HIV-positive men-who-have-sex-with-men (MSM); however, the number of new infections in this population in England is now relatively low with numbers declining from 29 in the first quarter of 2008 to 11 for the last quarter of 2010. 2 Although vertical transmission is considered low, higher rates of 40% are seen in mothers co-infected with HIV. 7 Thus, the highest rate of hepatitis C transmission occurs among persons who have shared drug injecting equipment. 3
Screening for hepatitis C is offered in drug services, genitourinary (GU) medicine sexual health clinics, ante-natal services and general practitioners (GPs). According to the British HIV Association (2010) all new HIV-infected patients should be screened for hepatitis C, and this should be repeated at least annually. 10 Testing for hepatitis C is not part of routine antenatal screening though those perceived to have been at risk will probably be offered testing. The babies born to mothers with hepatitis C will be offered screening by the neonatologist.
Role of partner notification
Partner notification has been defined as ‘… the process of contacting the sexual partners (or drug injecting partners) of an individual (source or index client or patient) who has an STI including HIV, and advising the partners that they have been exposed to infection. By this means, people who are at high risk of STI/HIV, many of whom are unaware that they have been exposed, are contacted and encouraged to attend for counselling, testing and other prevention and treatment services. Where possible, confidentiality is maintained by not providing the name of the source client to partners 11 (p. 32).
In England, partner notification is usually carried out by trained health advisers attached to GU medicine clinics. 12 Partner notification can be performed in one of three ways (see Table 2).
Scenario and rate of transmission
Methods of partner notification
In this context partner notification is a ‘formal’ process where the details of partners are recorded and their test results verified where possible. This is distinct from ‘informal’, where details of partners are not recorded and their test results not followed up. In this review article we focus on ‘formal’ partner notification.
Within GU medicine clinics patients diagnosed with hepatitis C should have a partner notification interview as recommended by the Manual for Sexual Health Advisers, but this is written in the context of it being an STI. 12 Thus from the guidance it is unclear whether drug-using contacts will be sought; this ambiguity manifests in practice with some health advisers in GU medicine clinics tracing injecting acquaintances and others not. In a subsequent chapter of the manual on HIV partner notification it is recommended that drug-using contacts are traced. There is no recommendation for hepatitis C.
For persons screened and diagnosed with hepatitis C outside GU medicine clinics partner notification will not be undertaken. In hepatitis C clinics in England infected people are asked to notify their sexual partner but the outcome is not verified. The children of mothers with hepatitis C will be referred to hospital for testing for the virus.
Effectiveness of partner notification
There is little evidence available on the effectiveness of partner notification for hepatitis C. However, an evaluation of partner notification using patient referral (with monetary incentives) in injection drug users (IDUs) mainly with hepatitis C in Seattle (USA) found: of 447 contacts (from 23 index cases), 160 (36%) were sought and 17 (10%) contacts came forward; of these, 10 had hepatitis C. 13 However, of these 10 contacts not all were linked to an index case, and would be picked up through alternative, more cost-effective means. This suggests that less than 1% of contacts would be uniquely identified using this contact tracing route. This 1% might well contain people for whom, ‘Partner notification is also likely to be ineffective if health services are either inaccessible or unacceptable to clients’ 14 (p. 249). It is a common finding that many people with hepatitis C do not wish to engage with health services and thus remain untreated.15–18
As such, the Seattle study suggests contact tracing is unlikely to be cost-effective. How does this compare with contact tracing for STIs, including HIV?
By contrast in the setting of HIV, four observational studies on partner notification included IDUs. 19 In summary, IDUs elicited higher numbers of contacts compared with other patients, with more contacts being screened. There was no indication that the proportion of contacts that were tested was lower in IDUs compared with other patients.
A systematic review confirmed that partner notification is a means of newly detecting STIs in the partners of index patients. 20 The review concluded that provider referral or contract referral, when compared with patient referral increases the rate of partners presenting for medical evaluation, and that patient referral enhanced by verbal health education together with patient-centred counselling by lay workers, when compared with standard care, results in small increases in the rate of partners treated.
There appears to be limited evidence of studies on partner notification measuring cost-effectiveness. However, in the National Chlamydia Screening Programme in England, a modelling study suggested that increasing the effectiveness of partner notification is likely to cost less than increasing screening among men. 21
The majority of hepatitis C infections are diagnosed outside of GU medicine clinics. 8 As discussions about partners should be initiated early after diagnosis, and it is beneficial if the patient does not have to be referred to another clinic such as GU medicine, this raises the concern that untrained staff would have to notify partners. The cost of training this group would be high and given the low probability of finding many of the undiagnosed population; it is unlikely to be cost-effective.
But even if proven to be cost-effective, should we undertake partner notification in hepatitis C? Would it be acceptable?
Acceptability of routine partner notification
Even if partner notification might reach some previously unidentified persons (particularly those not attending drug services), would there be unwanted consequences? From evidence above, in the setting of HIV, it appears IDUs may find partner notification acceptable and cooperate with the process. 19 However, the evidence appears mixed, with more recent qualitative studies exploring the attitudes of HIV-infected drug users towards partner notification finding that a greater proportion reported negative reactions to their partners being notified as compared with positive attitudes, 22 and at least 50% would refuse to participate in partner notification of sex partners if provider referral would be employed instead of patient referral. 23 Further, drug users were even less willing to participate in partner notification for needle-sharing partners than sexual partners. The participants reported that partner notification for needle-sharing partners is not practical and may result in ‘gossip’ in the community. Thus, persons with hepatitis C may find discussion about notifying their contacts intrusive, and they may be reluctant to share information about those with whom they have injected. If found or proven to be unacceptable to drug users, introduction of partner notification may result in individuals at high risk of infection putting off being tested which would be detrimental to the wellbeing of the individual and to public health.
Would partner notification for hepatitis C be practical? It is unlikely that people who put themselves at risk many years ago (not currently injecting) will be found. There is no reason to believe that they would necessarily be linked to people who have a diagnosis and, therefore, to believe they would be reached by contact tracing. Those who are current drug users and may be contacts of those with hepatitis C may nonetheless be hard to find due to not having permanent accommodation, being homeless or sent to prison.24,25 Further, groups of drug users might inject in places away from their accommodation and not know where each other lives, thus making it difficult to locate and trace them. Therefore, it could be argued that partner notification is unlikely to find high-risk and hard-to-reach persons. In addition, outreach workers employed to work with high-risk and hard-to-reach persons might be better able to engage the group of those with undiagnosed hepatitis C. People with a previous negative test may be alerted through partner notification to recent risk behaviour with someone known to have the virus. However, the introduction of annual (or sooner where a risk is identified) screening within drug services of IDUs with a previous negative test would obviate the need for partner notification. This approach of repeat screening has been agreed locally within drug treatment services (a minimum of 2-yearly) (Sheffield Drug and Alcohol Action Team. Minutes of Blood Borne Virus Group Meeting 24 November 2011. Sheffield: Sheffield Health and Social Care NHS Foundation Trust, 2011, unpublished).
Another difficulty relates to the time-span of those defined as contacts. Some persons may have been infected with hepatitis C for many years and have not injected recently. The median time from first injection to diagnosis is 11 1/2 years (Sheffield Hepatitis C Database. Number of years from first injecting risk to diagnosis. September 2011, unpublished). This leads to a concern about the appropriate cut-off time. Is it reasonable and practicable to ask about and attempt to notify contacts from the distant past? One could argue that uncertainties about the look back period should not influence a decision on whether partner notification should be offered to all contacts. However, it will impact on time, and on the cost and efficacy of this activity (discussed previously). Requiring details of partners’ drug use and other activity over several years raises concerns about the consent of the original infected person – knowing that your life is to be investigated in such depth could put off those who would otherwise seek a test.
Way forward
This discussion of the feasibility of partner notification in hepatitis C should not detract from the current priority of getting current and former IDUs tested. This is in itself a challenge not least because many individuals have poor venous access and some health workers may lack the knowledge to discuss hepatitis C and gain informed consent of the individual.
Some areas for future research to better define the role of partner notification in hepatitis C are:
the acceptability for IDUs of tracing drug using acquaintances; what role should specialist hepatitis C clinics play in partner notification? evaluation of hepatitis C partner notification in GU medicine clinics.
In the meantime, without empirical evidence I would suggest the following conditions might be favourable for undertaking partner notification in hepatitis C:
to focus on those persons at high risk, i.e. IDUs; where consent of the index case has been gained; to trace those that are easily contactable; accessible trained personnel to undertake partner notification.
Summary
Qn an individual basis it is appropriate to undertake partner notification for hepatitis C such as for an acute infection, but there is a case for it not being routine. Several factors make partner notification more difficult in hepatitis C than for other blood-borne viruses or STIs. The symptoms are often nonspecific; the disease can be dormant for long periods; it is associated with illegal and risky life-styles; and some of those at risk will have been so for only a short, experimental, period of their life. This raises concerns about whether consent to such tracing is feasible, and about whether it would put off those at immediate risk from seeking screening. There is also a concern for the privacy of those contacted, particularly if they did not want to be reminded or let others know of drug taking in earlier life. This latter concern is one that arises with contact tracing in general and it can be tackled; but the possible extension of tracing in terms of time and activity (i.e. drug use as well as sexual partners) makes it more difficult. Finally, the difficulty of partner notification in this case is likely also to make it expensive; given that other mechanisms, such as services for the homeless, are in place that can be used to contact those at risk, the cost of any additional people captured through contact tracing is likely to be prohibitive. A number of these concerns are borne out in the limited empirical data available. Overall, despite its prima facie appeal, routine contact tracing of partners for hepatitis C should not be recommended at this time.
