A pilot survey of stigma related to infection with hepatitis B and C

The European Centre for Disease Prevention and Control (ECDC) in collaboration with the World Hepatitis Alliance (WHA) developed a survey tool to explore stigma and discrimination experienced by people living with hepatitis. This tool was piloted in nine selected European countries (Bulgaria, Croatia, Cyprus, Denmark, Germany, Portugal, Romania, Spain, United Kingdom) to test the feasibility and acceptability of this approach. The main objectives of the study were to:

• develop a survey tool;

• implement the survey among a sample of adults living with hepatitis B and hepatitis C, or who have lived
  with hepatitis C;

• obtain data that could help understand hepatitis-related stigma among the surveyed communities;

• learn lessons from the pilot phase to help optimise the methodological approach for future surveys.

A total of 641 valid responses were obtained, with 487 (76%) respondents currently living or previously living with hepatitis C and 169 (26%) living with hepatitis B. Of the 169 respondents with hepatitis B, 15 reported that they also had or previously have had hepatitis C, and of the 169 respondents who were living with hepatitis C or had previously had hepatitis C, 15 reported they also had hepatitis B. The majority of those with hepatitis C reported that they had been cured (92%), with only 41 (8%) reporting they had an active infection. Of those with active hepatitis C infection, 18 (44%) respondents reported they were receiving care or treatment. Of the respondents with hepatitis B, nearly two thirds (62%) reported they were receiving care and/or treatment. Only nine (5%) of those with hepatitis B reported they were also living with hepatitis D. 

The results presented relating to stigma and discrimination are from a pilot survey and due to the many limitations of the methodological approach taken they may not be fully representative of the overall situation and should be interpreted with caution. In terms of quality of life, just under half (47%) of all respondents reported their health was very good or good, with this proportion higher among respondents with hepatitis B (56%) compared to those with hepatitis C (individuals with active infection and those who have been cured) (45%). A higher proportion of respondents with hepatitis B who were not on treatment or receiving care, reported better health than those who were being treated or receiving care. This discrepancy may be due to various factors, including the possibility that those on treatment have more serious disease or face challenges with taking the treatment that affects their overall health. Hepatitis C respondents who had been cured reported better health than respondents with active infection, suggesting a positive impact of curative therapy on their health status. 

Nearly half of the respondents (46%) considered it difficult to tell others about living with hepatitis B with this more commonly reported among respondents with hepatitis C (57%). Just under half of respondents with hepatitis B (44%) had concerns they could pass hepatitis on to others with this being a much greater concern for those with active or cured hepatitis C (70%). Poor self-esteem related to hepatitis status was much more commonly reported for those with hepatitis C (48%) compared to those with hepatitis B (18%). Over a fifth of those with hepatitis B or C had not told any family members or friends that they had hepatitis. Approximately one in six (17%) of respondents with hepatitis B and one in four (22%) of respondents with hepatitis C reported they had not told their current sexual partner(s) they were living with hepatitis. 

Respondents with hepatitis C were more likely than those with hepatitis B to report negative experiences of stigma in relation to family, friends and sexual partners such as being blackmailed, threatened or abused, receiving discriminatory remarks or being excluded from activities. In relation to experiences within the healthcare system, one in four respondents with hepatitis B and a third of those with hepatitis C reported they were worried they would be treated differently from other patients by healthcare staff. A quarter of respondents with hepatitis C and one in seven respondents with hepatitis B reported they even avoided accessing health services when they needed it because they expected to be treated differently. Additionally, hepatitis C respondents were more likely than respondents with hepatitis B to report they had been treated unfairly at work and denied professional opportunities. 

Our survey was a pilot study restricted to nine European countries with limited sample sizes in half of them. This restricts the conclusions that can be drawn on the data and the results may not be generalisable across the region or outside of Europe. The limited sample sizes restricted key analyses and a full exploration of the data such as through a disaggregation of the data by settings and across different population groups at high risk of hepatitis B or C infection (e.g. people who inject drugs, migrant populations). We also recognise that some population groups, such as people who inject drugs, were underrepresented in the survey and so our results may not be fully generalisable for the hepatitis populations as a whole. Furthermore, men who have sex with men seem to be overrepresented
among the respondents and this may have biased the results. We also recognise the unique challenge in assessing stigma among individuals who have only lived with hepatitis C infection for a short period of time before receiving curative treatment. We consider this issue needs much further exploration in future studies. 

In summary, the study demonstrated the feasibility of our methodological approach to collect data related to stigma and discrimination and the data collected suggest that hepatitis-related stigma and discrimination may be prevalent within the countries that participated in the pilot. Whilst the study undoubtedly marks an important step towards improving knowledge and understanding in this key area, the limitations of our approach restricted our analyses and the conclusions that may be drawn from the data. Key lessons learnt from the survey include the importance of future studies having a longer period for collecting the data, stronger engagement with a range of non-governmental organisations representing people living with hepatitis and using a broader range of communications to reach study participants. Whilst a study with larger sample sizes and with greater representation across population groups at risk of hepatitis B and C infection is needed, as well as a much greater exploration of stigma among those with hepatitis C, the results from this pilot still provide important information for
reflection. Our results suggest that stigma and discrimination may pose barriers in terms of access to hepatitis testing and treatment, which, as well as having a serious impact on the lives of people living with hepatitis, also means that achieving the scale up in services needed to reach the elimination targets will be difficult without targeted action to address stigma.