British Liver Trust presents patient survey findings at British Association for Study of the Liver event

Posted on: 23rd September 2021

The results of a new patient survey presented today at the British Association for Study of the Liver (BASL) Annual Scientific meeting highlights how chronic liver disease adversely affects patients’ quality of life. The survey also shines a light on the impact the COVID-19 pandemic has had on patient treatment and care.

Vanessa Hebditch, Director of Policy and Communications at the British Liver Trust, says: “Thank you very much to everyone who took the time to share their experiences with us. We will use the results of this survey to make sure the support and information we provide to people with liver disease is appropriate, and to campaign for better patient care.”

About the survey

Between December 2020 and February 2021, the British Liver Trust invited people with advanced liver disease to take an anonymous survey about how their condition affects their quality of life. The survey also asked specific questions about their need for platelet transfusion (PT) – the standard treatment for people with a very common complication of chronic liver disease, severe thrombocytopenia.

A total of 121 patients completed the survey. Alcohol-related liver disease was the most commonly reported primary liver disease (28%), followed by autoimmune hepatitis (18.5%).

Survey respondents: Primary liver disease

The results

When asked about how their condition affects their lives:

  • 90% said they were taking more than one prescription medication a day and 32% said they need someone else to help them take their medicines or remind them to take them.
  • A large proportion (69%) of patients reported that liver disease sometimes affects their ability to think clearly.
  • Over half of survey respondents (51%) have been told they may require a liver transplant in the future.

When asked about appointments and procedures:

  • Half of respondents recorded having to take time off work for liver-related hospital appointments. 40% of respondents noted they have to travel more than 25 miles to their liver centre/hospital for routine appointments.
  • Many patients (62%) reported that healthcare professionals have difficulties inserting a needle into a vein.
  • In terms of commonly required procedures and interventions in these liver patients, 40% of respondents have needed a dental extraction since being diagnosed
  • Over half of respondents said that the COVID-19 pandemic had led to procedures related to their liver disease being cancelled.

Proportion of respondents reporting that procedures related to their liver disease were cancelled or delayed because of COVID-19

When asked about platelet transfusion:

  • Almost a third (30%) of respondents said they have required a platelet transfusion at some time and of those, 70% had to stay in hospital the night before the treatment.
  • Patients reported that the reasons for needing a platelet transfusion were typically well explained.
  • 42% said they felt unwell during or after the procedure.
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