PSC Quality of Life Measure

Development of the PSC-specific quality of life measure began in 2016

Here's a brief history of our work to date.

July 2016

We are developing a measure to assess the quality of life of people living with primary sclerosing cholangitis (PSC), under the supervision of Dr Douglas Thorburn and academics in the Marie Curie Palliative Care Research Department (MCPCRD) at University College London.

This is an exciting, ground-breaking project, aiming to produce the first validated quality of life measure for people living with PSC, with real scope to influence care and treatment.  There is a critical need for such a measure a, since PSC patients encounter many quality of life related issues, and it is important to develop treatments for PSC that improve quality of life (see recent PSC Support survey results on unmet needs and research implications). Equally, it is important that novel therapies for PSC do not have a negative effect on patients’ quality of life.

PSC Support and the British Liver Trust are therefore developing a PSC-specific quality of life measure for UK patients. The funding for this UK PhD project has been provided by the British Liver Trust, to fund a student to undertake the work in the UK and PSC Support. The initial funding becam available in a bequest from Mary and Bill (pictured below) who specified that they wanted their money to be used towards an important PSC study. The principal investigator is Dr Douglas Thorburn, supported by experienced researchers from the UCL Marie Curie Palliative Care Research Department. The UK project is expected to be completed in 2018/9, and the measure may then proceed to international validation, hoping for completion by 2020/1.

Our vision for a Quality of Life measure was presented at the March 2016 AASLD/FDA Conference on Trial Design and Endpoints for Clinical Trials in Adults and Children with primary sclerosing cholangitis and has received international interest from leading researchers and key regulatory authorities (FDA and EMA). The proposed measure will be key in measuring the quality of life for people with PSC and will be suitable for multicentre international clinical trials, to evaluate patients’ responses to new treatments for PSC.

PhD candidate Elena Marcus was appointed July 2016, and began work to develop the measure in October 2016.

Martine Walmsley, Chair of Trustees for PSC Support said, 'We are delighted to have attracted a researcher of Elena’s calibre to join our team. During her interview, Elena demonstrated the passion, ability and experience necessary to ensure the delivery of a truly high-quality PSC QoL measure. This project is critical and we're excited it's moving forward.'

Mary and Bill

October 2016

PSC Partners joins the team, contributing funding towards international development with PSC Support and the British Liver Trust.

November 2017

The first stage the first phase of interviews/focus groups begins.

January 2018

Video released updating on progress of project:

October 2018

The second stage recruiting begins.


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