New app provides valuable lifeline for young people with liver disease
A new app, developed by Children’s Liver Disease Foundation (CLDF) in conjunction with Coventry University, is helping young people with liver disease to manage their condition independently. My Liver app was commissioned by CLDF following research which showed that when young people move from paediatric to adult services there can be major differences in their experiences and even deterioration in health, as they find it a real challenge to take control of their own care.
The project was led by Professor Jane Coad, Associate Dean of Research at the University’s Children and Families Research Group who commented: “By working directly with young liver patients and the medical staff who support them, we have been able to identify the information they need to start managing their own condition, take decisions about their care and increase their independence.”
The app, launched in December, contains a wealth of information on different liver conditions, essential contact details and even a reminder feature for taking medication and hospital appointments. With 458 downloads to date, it has been welcomed by young people who are learning to live with a lifelong liver disease.
“I have really benefitted from using the app” says 18 year old Manhattan who has primary sclerosing cholangitis. “My favourite part is the information on the different liver conditions, which has allowed me to understand them much better, especially when it comes to medication.”
The most popular page on the app however is Hive, the charity’s social media platform exclusively for young people with a liver disease or transplant. To date there have been 2400 views of Hive through the app.
“Because childhood liver disease is rare it can be isolating,” explained CLDF Chief Executive, Alison Taylor. “So we are delighted to see that through the My Liver app, young people can not only gain quick and easy access to information about their condition but are connecting with each other and forming valuable peer support networks.”
Photo caption: The My Liver app is helping young people with liver disease learn to manage their condition.