Time To DeLiver
In 2015 ELPA launched a new call to action report ‘Time to DeLiver: Getting a Grip on HE’ at the European Parliament in Brussels. This was the first report from Europe to highlight the significant burden of hepatic encephalopathy on patients, their carers, families and society in general.
Hepatic encephalopathy is a potentially life-threatening neuropsychiatric condition associated with liver disease. It remains underdiagnosed and under-treated, resulting in poor quality of life for patients and a high burden on those who care for them.
Hepatic encephalopathy (HE) is a debilitating condition that affects up to 40% of patients across Europe who suffer from advanced chronic liver disease. Despite the severity of hepatic encephalopathy, it remains underdiagnosed and under-treated, resulting in poor quality of life for patients and their carers.
Yielding a big success with the campaign in 2015, we are continuing to improve the management of hepatic encephalopathy with the launch of patient leaflet to improve the early detection of hepatic encephalopathy as well as the patient passport to facilitate conversations with healthcare professionals.
Understanding Hepatic Encephalopathy patient leaflet is issued in Danish, Dutch, English, French, German, Hungarian, Italian, Russian, Serbian, Spanish and Swedish.
More on Time to DeLiver
To address this challenge, the Time to DeLiver campaign was formed with the aims of driving change in the perception of hepatic encephalopathy among the public, healthcare professionals, payers and policy makers, and to improve the identification and management of this debilitating condition. It is ELPA’s hope that this will ultimately benefit both patients and carers, as well as healthcare systems and policy makers.
The objectives of our campaign are to ensure the specific inclusion of hepatic encephalopathy within public-facing information, to improve the provision of quality care for patients and to ensure the patient’s voice is heard on a national and European level.
Chronic advanced liver disease (often called cirrhosis) results from long-term injury to the liver with hepatic encephalopathy being a significant complication. Hepaticencephalopathy occurs in up to 40% of people with advanced chronic liver disease1 and affects up to 200,000 people in Europe. What’s more, hepatic encephalopathy is associated with a poor prognosis and large numbers of people will die from the condition. The symptoms of hepatic encephalopathy are often subtle and easily missed, meaning that
the condition is generally under-diagnosed. Healthcare providers who are not specialists in liver disease may only occasionally encounter patients with advanced chronic liver disease
or hepatic encephalopathy. Furthermore, they may not identify hepatic encephalopathy as a possible cause of symptoms.
Hepatic encephalopathy interferes with the way a person interacts socially, their sense of well-being and many report feeling stigmatised by their disease. This may lead to an unintentional barrier preventing patients and their caregivers accessing healthcare and support services. It is for this reason that this report makes a number of calls to action, including simplified guidelines which define what care and support for people with hepatic encephalopathy should look like. The guidance has to be easily applicable and usable in clinical practice by a range of healthcare professionals. Addressing these barriers would not only improve the lives of patients, but also those of their families and caregivers. Importantly, effective diagnosis and treatment of hepatic encephalopathy can improve outcomes by maintaining remission and reducing the risk of hospitalisation.
Guidelines from The European Association for the Study of the Liver (EASL) and the American Association for the Study of Liver Diseases (AASLD) underline the need for coordinated care, so that everyone involved can understand how best to manage hepatic encephalopathy in patients and prevent them being forced to stay in hospital unnecessarily. There are 10 calls to action in total in our report, ranging from a call on healthcare providers, policy makers and patient organisations to work together to properly assess the impact of hepatic encephalopathy on patients and others, to calling for comprehensive training and education to ensure healthcare professionals can identify the symptoms of hepatic encephalopathy and take appropriate action.
Click here for The report on Time to DeLiver campaign or scroll down for download.