Evaluating barriers and facilitators to engagement in CHB
Research type
Research Study
Full title
Exploring the lived experience and defining barriers to engagement with medical care and treatment for patients with Chronic Hepatitis B in East London.
IRAS ID
311895
Contact name
Jane Abbott
Contact email
Sponsor organisation
QMUL
Duration of Study in the UK
1 years, 5 months, days
Research summary
"Research Summary"
Chronic Hepatitis B (CHB) affects almost 300 million people around the world. There is currently no known cure and patients often need life-long treatment. Living with Hepatitis B can affect people in different ways (physical and psychological.) Getting a diagnosis of Hepatitis B can still carry stigma for many people. CHB can be associated with anxiety, depression and social isolation.Hepatitis B can affect anyone, but in the UK it is more likely to be diagnosed in people from ethnic minorities. There is a gap in our understanding of CHB in the UK, when compared to similar diseases such as HIV and Hepatitis C. Few studies have explored how Hepatitis B affects people living with it and similarly we don’t understand the barriers which prevent people accessing care.
This study will address the patients experience, living with Hepatitis B, and the problems they may face in accessing care. We also want to better understand why people may not want treatment or do not attend for tests and monitoring of their disease. This is important to ensure easy and equal access to care and medical treatment in order to improve healthcare for CHB patients.
The study will involve a mixture of surveys, interviews and focus groups. Patients will be asked about their experience of living with CHB. We will also collect information on the patients' background and what they think about treatment. We will also ask experts for their views.
"Summary of results"
This study was designed to explore the lived experience of people living with Chronic Hepatitis B (CHB) in the UK, and issues they may face when accessing healthcare or medical treatment for their hepatitis. The study was carried out by a PhD student at Queen Mary University of London, and involved 153 study participants who were recruited from Bart’s Health NHS Trust between 2022 to 2024. A mixture of patients and healthcare workers were recruited to this study and all participants completed either an interview, an online survey or a focus group. Many of the individuals in this study were born outside the UK, speak languages other than English, and have varying levels of education and employment. A significant number also reported financial difficulties and live in areas with high poverty, which is linked to poorer health outcomes. With additional health problems like obesity, inactivity, and alcohol use, more comprehensive care may be needed to address these challenges for people living with CHB.
When it comes to sharing their diagnosis, many individuals are cautious. People living with CHB often don't share their condition with family, friends, or employers due to fear of being judged or rejected, as many people don’t fully understand CHB.
Some patients have experienced negative reactions in the past, which had personal consequences. The psychological impact of a CHB diagnosis is significant and many patients experience ongoing anxiety and depression. People living with CHB report needing more support after receiving their diagnosis. This may include information about the condition, psychological counselling or peer support, as everyone has different needs.
The stigma around CHB affects how patients engage with healthcare. For example, some are reluctant to get tested or attend clinic appointments, fearing that others might find out about their condition. For those struggling with anxiety or depression, it can be hard to stay engaged with treatment and appointments.
Patients also reported physical symptoms like abdominal discomfort, fatigue, and"brain fog." Although these symptoms can be hard to link directly to CHB, it's clear that the condition isn't always symptom-free. This suggests that more holistic care, addressing both physical and mental health, is needed for CHB patients.
Most of the people living with CHB in this study reported positive experiences with healthcare, but there are aspects of care that could be improved, particularly in terms of convenience.
Many individuals suggested that clinics should offer more flexible hours, like evenings and weekends, and while telephone appointments are appreciated, many still prefer in-person visits. Another common issue was difficulty involving General Practitioners (GPs) in the early stages of care, with patients feeling that their GPs should do more to support them and help bridge the gap between diagnosis and specialist treatment.
Understanding CHB is crucial for both patients and healthcare workers (HCWs) to ensure that patients receive the right care. HCWs in this study pointed out that many patients don’t fully understand the condition, including the risks and why monitoring is important. On the other hand, patients feel they often aren’t given enough information and that there is a lack of public awareness about CHB, which leads to misunderstandings and stigma. Both healthcare workers and people living with CHB agree that better information about CHB is needed. Providing clear, accessible information would help patients and their families, and could also reduce stigma among the wider public. Information should be available in different formats and languages to reach more people.
The pressures on healthcare services made worse by COVID-19, have led to delays in care. Clinics that are only open during 9-to-5 hours are difficult for those with inflexible work schedules. There is also a concern that some patients don’t have the health literacy (understanding of healthcare systems and information) to navigate the system, and language barriers can make this even more difficult. In some cases, patients rely on others to interpret, which can make it hard to understand their true concerns or ensure they fully understand what’s being explained.
Acceptance of treatment among people living with CHB is influenced by a variety of factors. People from regions where CHB is common may be less concerned about the disease and the need for treatment. Family and friends can sometimes negatively influence decisions, often by pushing patients toward alternative or traditional treatments, especially if they travel back to their home countries.
Some patients face challenges accessing medications, especially if they need to pick up prescriptions from hospitals with limited hours. Many patients don't fully understand why they need treatment, how it works, or what could happen if they stop the medication suddenly. Clear information about the benefits, side effects, and risks of treatments is needed to help patients make informed decisions.
Fear of side effects is a major reason why patients delay or refuse treatment. Even if a treatment has the potential to cure the disease, if it comes with significant side effects, patients may hesitate to accept it. As there is no cure for CHB, some patients are reluctant to start treatment, hoping for a better solution in the future. They may prefer waiting for new treatments or clinical trials that promise a cure.
This study has made several recommendations on actions to improve care for people living with CHB. There is a clear need for more support which could include counselling, or support groups. Some patients might also need help explaining their diagnosis to others, and follow-up appointments with a nurse or doctor could provide a space for family members to be involved. Culturally tailored peer support programs could help patients throughout their treatment journey. "Pop-up" events where healthcare workers and patients meet informally could also be helpful. Changes to how services are delivered, for example with community based teams, using e-health solutions and ‘one-stop’ clinic models could all help to streamline care.
At a public level, increased awareness of the condition could be achieved by a national public health campaign, and improving the availability of accessible information. Lastly, further education of HCW (both in hospitals and in the community) about CHB could help improve diagnosis, treatment, and patient engagement.REC name
Wales REC 7
REC reference
22/WA/0142
Date of REC Opinion
27 Jun 2022
REC opinion
Further Information Favourable Opinion