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PSC Quality of Life Measure

The UK-PSC Quality of Life Measure (UK-PSC-QoL)


We are developing the first patient-centred, PSC-specific Quality of Life measure for people with PSC, and is a critical tool for improving the wellbeing of people with PSC.

A Quality of Life measure is a questionnaire, and is important because people with PSC experience many quality of life and wellbeing issues, yet there is no validated way to measure them. Without a PSC-specific quality of life measure, we cannot say whether a new drug improves quality of life, or indeed makes quality of life worse.  In the absence of a reliable quality of life measure that addresses issues important to people with PSC, researchers have no choice but to use generic questionnaires, or worse, quality of life questionnaires developed for different diseases. This is not good enough.

The steering committee overseeing the entire development comprises: Professor Douglas Thorburn (UCL/Royal Free, London), Professor Shivani Sharma (Aston College/ University of Hertfordshire) PSC Partners, British Liver Trust and PSC Support.

This research is funded by PSC Support and the British Liver Trust. The first stage of the Quality of Life Measure was delivered by Dr Elena Marcus. The second stage is being delivered by Ryan James as his PhD fellowship at the University of Hertfordshire.

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