A trust established links with the South Asian community to reduce health inequalities in access to services for hepatitis C virus testing and treatment
This article describes a project that worked to raise awareness of hepatitis C virus (HCV) in the South Asian community. The aim was to encourage people to come forward for testing and to reduce the incidence of liver disease in this group. Health education talks were given within the community and two GP practices offered support. Seventy four people came forward for HCV testing, three of whom were HCV positive and were referred for antiviral treatment.
Citation: Greyson O (2012) Hepatitis C awareness among South Asians. Nursing Times; 108: 32/33, 21-23.
Author: Opal Greyson is viral hepatitis nurse specialist at Bedford Hospital Trust.
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Morbidity and mortality due to hepatitis C virus (HCV), cirrhosis, hepatocellular carcinoma (HCC) and chronic hepatitis B virus (HBV) are more common in people from minority ethnic backgrounds than the general population (Advisory Group on Hepatitis, 2009). They are also more likely to experience an admission for, or to die from, severe liver disease and are less likely to be diagnosed and treated for HCV before progression to advanced liver disease (Health Protection Agency, 2008). Increasing awareness of HCV is key to reducing the number of undiagnosed infections in those at risk (HPA, 2008).
HCV awareness and barriers to testing
Although national awareness campaigns have been running since 2004, I observed enormous differences between levels of awareness in London (where I previously worked) and Bedford - people in London appear to have a higher level of awareness of hepatitis C as most awareness campaigns and initiatives are carried out there.
This was apparent as during the launch of the national awareness campaign there were around 40 confirmed HCV diagnoses from an estimated prevalence of 987 in Bedfordshire, which has a total population of 420,000. In addition, only four out of a total of 13,500 people from the South Asian community were identified and referred to the local hospital for treatment.
Networking and discussions with people from the South Asian community highlighted that knowledge about HCV was lacking, varied and filled with myths; for example, some people thought water was the source of infection. However, irrespective of their knowledge, people were not coming forward for testing. Some people felt the current HCV testing facilities, such as GP surgeries, were a barrier to testing, while services such as genito-urinary medicine clinics and Terrence Higgins Trust clinics were seen as a taboo and often associated with stigma (Hepatitis C Trust, 2010). Opening times of 9-5pm on Mondays-Fridays presented difficulties across all settings, which deterred people from coming forward for testing (Hepatitis C Trust, 2010).
In light of this, Bedford Hospital Trust took action via this project to increase awareness of HCV, provide suitable testing facilities and reduce health inequity in access to services among the South Asian community.
Aims and objectives
Targeted at the South Asian community in Bedford, the project aimed to:
- Increase awareness of HCV by improving knowledge of HCV among health professionals and the South Asian community;
- Improve access to testing for HCV by offering free testing in different settings in the heart of the community;
- Assess the prevalence of HCV antibody by testing people to determine exposure to the virus. Those who might be infected with HCV should be identified and referred to the local hospital for care and management.
Educating health professionals
The hepatology team was already carrying out awareness-raising activities, but Catt (2007) argued it is essential to continue increasing awareness and education among health professionals and the public. Therefore it was vital to provide educational sessions for health professionals, particularly GPs and practice nurses.
The hepatology team and a consultant hepatologist from a London hospital delivered the first educational session at a hotel in Bedford. In total, 78 health professionals attended the evening, including GPs, practice nurses, medical consultants, specialist nurses and students, as well as people from voluntary services and service users. The evening gave attendees the opportunity to increase their knowledge about HCV, identify patients who may be at risk of the virus and learn about the patient referral pathway. Box 1 outlines the content of the programme.
Box 1. Educational session content
The education session for health professionals comprised:
- Hepatitis C virus background and epidemiology
- Local experience and referral pathway
- Hepatitis C virus quiz
- Information about the Mary Seacole Award I received to carry out the project
- A request for attendees to allow me to visit their surgeries to raise awareness and offer testing to patients
- Patient experiences
Some 58 (74%) of health professionals evaluated the evening, including 10 GPs and four specialist consultants. Overall, 68% of respondents strongly agreed the programme met the stated educational objectives and 66% felt the content was well balanced. All those who responded felt the content provided updated information on treatment and 94% said it was relevant to clinical practice. Finally, 71% strongly agreed that the information presented would help them with future clinical-management decisions.
The second HCV awareness-raising event took place with staff at a local government-funded neighbourhood centre, which provides support to families and children in the community. I provided the audience with basic knowledge on HCV and transmission risk. The message was well received as staff had limited or no knowledge about HCV; as a result they invited me back to speak to centre attendees.
Educating the South Asian community
Following the education session for the health professionals, two local GPs offered their support by providing me with the opportunity to run hepatitis C clinics at their surgeries to raise awareness of HCV and offer testing. In addition, one of the GPs assisted with the awareness raising in the mosques and signposted the community to the hepatitis C testing services at two local surgeries.
Gaining access to the community was the second priority as it would allow me to engage in awareness raising among people of South Asian origin.
As resources were limited, I decided to concentrate on an area of Bedford with a large South Asian population. The area has two mosques and a Sikh temple, all of which are near to the two GP surgeries where testing was being offered. Before raising awareness, it was crucial to gain access to, and support from, the leaders of each community so they could advise on the most effective ways to enable awareness raising.
The assistant director of research and development at the local hospital arranged access to the first mosque so I could address 1,300 worshippers (700 men at the mosque and 600 women listening via a radio link that goes directly into the homes so that women who do not attend can listen). As it was important to deliver the correct message to worshippers, a mosque committee member briefed me before I addressed them, to ensure the message was accurate and informative without causing panic or alarm. After Friday prayers three men came forward asking about HCV testing and one attended the hospital to have a test the following week. Leaflets in Bengali and Urdu endorsed by the Department of Health and the Hepatitis C Trust were handed out to worshippers in their preferred language.
In February 2011, a hepatitis C health champion and I were invited to attend Friday prayers at a second mosque, with support from a GP; again we gave out information leaflets about HCV, which detailed the opening times of the free testing service. During Friday prayers the GP made an announcement about HCV and its risk factors, encouraging male worshippers to attend the GP surgery for a test.
As it was important to keep the momentum going, the GP arranged a second visit to the first mosque in March 2011. As the mosques had no facilities (rooms), testing was not offered while the awareness raising was taking place.
Between December 2010 and January 2011, a senior member of the Sikh community arranged access to the three main gurdwaras and we left leaflets in English and Punjabi for worshippers to read.
After meeting with one community leader in January 2011, I had an opportunity to attend the temple on the day of worship to raise awareness of HCV to around 90 people. I spoke in English and a Punjabi-speaking hepatitis C health champion interpreted for me; a question-and-answer session was held afterwards. At the end of this session, seven worshippers came forward and had an HCV test on that day at the temple.
As it was extremely important to get the message across to as many women as possible as well, this meant accessing places they frequented; these included the neighbourhood centre and one local mosque on a Friday night.
In February 2011, a hepatitis C health champion, two patients from the Pakistani community and I attended the women’s group at the neighbourhood centre. Twenty women who were mostly of South Asian origin attended the group. We handed out leaflets in Urdu and English; one woman had a test and a second telephoned her husband to tell him to attend the centre to have a test, which he did.
At one mosque, which held Arabic classes for women, the awareness team had an opportunity to address around 40 women.
Once the awareness initiatives were fully underway, it was clear the message was reaching the South Asian community - people were telephoning me as well as the two GP surgeries for testing. Word of mouth also helped, as people who had come forward to be tested often sent their family and friends to do the same.
The first blood test to determine whether people have been exposed to HCV is an anti-HCV antibody test; if the antibody is detected a second blood test (HCV ribonucleic acid) is taken to identify whether they have current or past infection.
As the project was community based and financial resources were limited, I opted to use a different method for the first test. I chose the OraQuick HCV Rapid Antibody Test as no needles or blood were involved - an oral sample was taken instead. The OraQuick is a single-use, anti-HCV assay. It can detect antibodies to HCV in oral fluid, via the fingerstick method or venipuncture, whole blood or plasma. It provides rapid results in 20-40 minutes, allowing people to learn their HCV antibody status, and, if necessary and appropriate, receive counselling and information about their future treatment and care all in one visit.
As this method was fairly new to me, all those who came forward for testing were sent for a confirmed venous HCV antibody test at the hospital. In addition, an HBV test was performed with consent as the risk factors for HBV are similar to those for HCV.
Alternative testing services
As it was important to provide an alternative testing service for members of the South Asian community outside of current services, we offered HCV testing to people wishing to have a test after the awareness campaigns. Testing took place at the neighbourhood centre, one Sikh temple and at the local hospital.
A total of 17 people accessed testing at these centres: seven at the temple; two at the neighbourhood centre; and eight came to hospital.
Awareness raising and improving access to HCV testing
It was also important to improve access for people having HCV tests at two local surgeries.
Contrary to reports suggesting that accessing HCV tests from GPs can deter people from coming forward because of lack of confidentiality and opening times, 57 people from the South Asian community accessed testing after awareness-raising events that were held at GP surgeries.
Extended opening times offered at the GP surgeries (3-7pm or 5-7pm), supportive GPs, and having a dedicated specialist nurse on site to offer advice and support all improved testing facilities. One GP practice was ideally situated in the heart of the community near both mosques where awareness raising was being delivered, making it easily accessible to worshippers.
The testing was a walk-in service (no appointments necessary) and had a dedicated hepatitis C health champion acting as an interpreter.
Seventy-four people from the South Asian community came forward for HCV testing (38 men and 36 women). Three were identified as HCV antibody positive on oral swab, which was confirmed as HCV antibody and HCV ribonucleic acid positive at the local laboratory. All three have been referred to the hepatology service at Bedford Hospital Trust and all three have started antiviral treatment. Of these, two people have completed treatment. None of these three individuals had any clinical symptoms.
All those who came forward for testing were advised to be tested for HBV and HCV. A total of 62 out of 74 attended the hospital to have this done. All HCV test results were validated by the venous blood test at the laboratory. One person who was negative for HCV antibody was identified with chronic HBV and is now receiving appropriate care and management.
This project highlighted two main reasons for the low number of people of South Asian origin in Bedford presenting for HCV testing:
- Lack of awareness of HCV;
- Inappropriate testing facilities across the community.
However, once we increased awareness raising in the community and improved access to testing facilities to meet the needs of the community, it encouraged those at risk to come forward for testing. The device used to perform the initial test also helped to encourage people, as the results are rapid and the test is minimally invasive.
Pivotal to the project’s success were the links I made with community leaders, GPs, the hepatitis C health champions and other services already working with, and caring for, the community. This ensured the community were receptive to me and allowed opportunistic case-finding and voluntary testing to take place.
Trusts also need to consider the cost implications if people with HCV are not identified early and progress to end-stage liver disease. The cost incurred by the primary care trust to treat the three people identified on the project ranged from £6,000-16,000 depending on the genotype and duration of treatment; this figure is much lower than the reported average costs to treat patients who have end-stage liver disease.
The project allowed for early identification of the virus in three people, reduced the morbidity and mortality that may have occurred if they were left undiagnosed and untreated, and made cost savings.
- Morbidity and mortality due to hepatitis C virus (HCV) and chronic hepatitis B are more common among people from minority ethnic backgrounds than the general population
- Increasing awareness of HCV is key to reducing the number of undiagnosed infections in those at risk
- To raise awareness it is vital to establish links with GPs, community leaders, hepatitis C health champions and other services already working with the community
- Nurses should increase their knowledge about viral hepatitis to provide accurate information to those at risk and help reduce stigma
- Viral hepatitis risk-assessment tools could be used (when appropriate) when patients from medium and high-endemicity countries seek advice for other ailments
Advisory Group on Hepatitis (2009) Case-finding for Hepatitis B and C Virus Infection in Minority Ethnic Populations in the United Kingdom. London: AGH.
Catt J (2007) FaCe It Hepatitis C Best Practice - Provision of Care.
Health Protection Agency (2008) Hepatitis C in the UK: The Health Protection Agency Annual Report 2008. London: HPA.
Hepatitis C Trust (2010) Diagnosing Viral Hepatitis in the Community: A Three-Month Pharmacy Testing Pilot. London: Hepatitis C Trust.