Join us to work on PSC-specific quality of life assessment in research and clinical care settings!
Ensuring satisfactory quality of life is an essential aspect of patient experience and outcomes. Quality of life (QoL) assessment can help inform service design and care delivery, as well as evaluate the impact of interventions for children and adults. As a construct, QoL has been assessed using both universal and disease-specific tools. It is generally accepted that specificity in quality of life (QoL) measurement is advantageous. There are currently no validated, quality-of-life (QoL) tools for patients with primary sclerosing cholangitis (PSC), although several research teams are working to address this need. This workshop provides a platform to engage with relevant stakeholders as we work towards normalising PSC-specific QoL assessment in research and clinical care settings.
It will support:
· Considering stakeholder perspectives on essential dimensions of QoL assessment in PSC across the life course.
· Supporting cross cultural collaboration in PSC QoL research by bringing QoL research by bringing the right stakeholders together
· Coordinating initiatives to ensure efficient use of resources and expertise.
· Providing regulatory bodies with insights into the research landscape while outlining requirements for tool and tool qualification.
· Embedding from the outset a focus on effective implementation for demonstrable patient benefit across the life course.
This workshop is funded by the European Reference Network RARE-LIVER and organised by the Medical University of Warsaw. The workshop will be co-led by:
· Dr Maciej Janik, Department of Hepatology, Transplantology and Internal Medicine, Medical University of Warsaw, Poland,
· Professor Piotr Milkiewicz, Department of Hepatology, Transplantology and Internal Medicine, Medical University of Warsaw, Poland,
· Professor Douglas Thorburn, Sheila Sherlock Liver Centre & UCL Institute for Liver and Digestive Health, Royal Free Hospital, London, UK.
· Professor Shivani Sharma, Aston University, Birmingham, UK.
The workshop coordinator is Ryan James (MSc, GMBPsS), University of Hertfordshire, UK.
You are welcome to join us in Warsaw!
