Patients’ Views and Experiences of Autoimmune Hepatitis
Research type
Research Study
Full title
A Qualitative Study to Explore Patients’ Views and Experiences of Autoimmune Hepatitis and its Management
IRAS ID
271402
Contact name
Jessica Katharine Dyson
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 7 months, 1 days
Research summary
Our immune system normally protects us by attacking the bugs that cause infections. Occasionally a person’s immune system can develop a fault and start to attack parts of the body instead. In autoimmune hepatitis (AIH), a faulty immune system attacks the liver. AIH is a rare disease that affects around 10,000 people in the UK. People who develop AIH often need lifelong treatment with medicines to reduce the activity of their immune system. Not everybody responds well to the current treatments and some people suffer from side effects of treatment. Recent work from the UK-AIH consortium (the national study for patients with AIH) has confirmed that many patients have significant problems with poor quality of life that is related to both their disease and the treatments they receive. Steroid tablets are still one of the main treatments used for AIH and it is well known that these have many side effects. We want to collect more information about what patients think about their treatment, the side effects they experience and what they would like to see as their future treatment. This will help us to understand what is important for patients and try to develop better treatments that meet their needs. Patients who receive care for their AIH at the tertiary autoimmune liver disease clinic in Newcastle upon Tyne Hospitals NHS Foundation Trust (NUTH) will be invited to take part in a qualitative study with an interview to explore their views and of AIH and its management. The information will be stored safely and data will be anonymised. This study is being coordinated by Newcastle University and NUTH is the sponsoring organisation.
REC name
Wales REC 7
REC reference
20/WA/0041
Date of REC Opinion
3 Feb 2020
REC opinion
Favourable Opinion