Project overview
People with cirrhosis and untreatable ascites who do not receive a liver transplant live on average for about six months. Medical care then focuses on controlling symptoms and having the best possible quality of life. This is known as palliative care.
Current standard palliative care for untreatable ascites involves coming into hospital for 1-2 days, putting a thin tube into the abdomen for a few hours and draining 5-15 litres of fluid. This reduces the pain from ascites. However, as the ascites builds up quickly, hospital visits are needed every 10-14 days. Our patients describe repeated hospital drainage as ”devastating” and “unbearably painful”. For people with untreatable ascites due to cancer (rather than cirrhosis), palliative care involves placing another tube, a long-term abdominal drain (LTAD), into their abdomen. This tube is fitted in hospital but stays in place for months. Nurses/carers then drain smaller amounts of fluid (1-2 litres) up to three times a week in the community. LTADs avoid frequent hospital visits and can improve quality of life. LTADs are not routinely offered to people with cirrhosis as they can have complicated social issues like addiction, making community care difficult. Secondly, people with cirrhosis are at increased risk of ascitic fluid infection. The concern is that LTADs might further increase this risk. It remains uncertain, therefore, if LTADs could improve quality of life for people with cirrhosis.
We ran a small study (2015-18) with 36 patients with cirrhosis and untreatable ascites. Half received LTADs and half continued with standard hospital drainage. LTAD insertion went well with no major complications. Almost all with LTAD were managed in the community with lower overall costs compared with hospital drainage. Participants were willing to fill in study questionnaires and take part
in interviews. Patients and clinical staff told us that LTADs were acceptable to them.
We now need a larger study to understand the risks/benefits of palliative LTADs in people with cirrhosis. In this study, people who agree to take part will have ascites drained through either LTAD or repeated hospital visits. Community nurses will visit LTAD patients at home up to three times a week for ascites drainage. Researchers will visit ALL participants at home every 2 weeks for 3 months for safety monitoring and also record quality of life, symptoms, carer workload and use of NHS services (using questionnaires). We will record all infections that occur. We will talk with patients/carers/clinical staff to ask their views about the research. The most important measure chosen to see if LTAD is a good option for people with cirrhosis is quality of life. The study has been designed with help of the patients/caregivers who are part of the research team.
This study is lead by Professor Sumita Verma at University Hospitals Sussex NHS Foundation Trust
Current standard palliative care for untreatable ascites involves coming into hospital for 1-2 days, putting a thin tube into the abdomen for a few hours and draining 5-15 litres of fluid. This reduces the pain from ascites. However, as the ascites builds up quickly, hospital visits are needed every 10-14 days. Our patients describe repeated hospital drainage as ”devastating” and “unbearably painful”. For people with untreatable ascites due to cancer (rather than cirrhosis), palliative care involves placing another tube, a long-term abdominal drain (LTAD), into their abdomen. This tube is fitted in hospital but stays in place for months. Nurses/carers then drain smaller amounts of fluid (1-2 litres) up to three times a week in the community. LTADs avoid frequent hospital visits and can improve quality of life. LTADs are not routinely offered to people with cirrhosis as they can have complicated social issues like addiction, making community care difficult. Secondly, people with cirrhosis are at increased risk of ascitic fluid infection. The concern is that LTADs might further increase this risk. It remains uncertain, therefore, if LTADs could improve quality of life for people with cirrhosis.
We ran a small study (2015-18) with 36 patients with cirrhosis and untreatable ascites. Half received LTADs and half continued with standard hospital drainage. LTAD insertion went well with no major complications. Almost all with LTAD were managed in the community with lower overall costs compared with hospital drainage. Participants were willing to fill in study questionnaires and take part
in interviews. Patients and clinical staff told us that LTADs were acceptable to them.
We now need a larger study to understand the risks/benefits of palliative LTADs in people with cirrhosis. In this study, people who agree to take part will have ascites drained through either LTAD or repeated hospital visits. Community nurses will visit LTAD patients at home up to three times a week for ascites drainage. Researchers will visit ALL participants at home every 2 weeks for 3 months for safety monitoring and also record quality of life, symptoms, carer workload and use of NHS services (using questionnaires). We will record all infections that occur. We will talk with patients/carers/clinical staff to ask their views about the research. The most important measure chosen to see if LTAD is a good option for people with cirrhosis is quality of life. The study has been designed with help of the patients/caregivers who are part of the research team.
This study is lead by Professor Sumita Verma at University Hospitals Sussex NHS Foundation Trust
