We are initiating an ambitious new project to quantify the experience of patients with PSC, assess its impact on their quality of life and monitor this over time. No validated measure of quality of life for patients with PSC currently exists. We therefore aim to develop, evaluate and validate a PSC-specific quality of life tool in UK patients and then proceed to validate this internationally. Such a tool will be a key measure of the impairment of quality of life in patients with PSC, and will thus highlight the need for further research into the disease.
In addition this tool will be suitable for multicentre international clinical trials, to evaluate the responses to new treatments for PSC. While the need is to develop treatments which will be effective in changing the natural history of the disease, it is equally important to develop treatments that will improve quality of life alone, or at least ensure that disease-modifying agents do not make patients’ quality of life worse.
The initial funding for this project has been provided by the British Liver Trust and will be used to fund a PhD student to undertake the work. The principal investigator is Dr Douglas Thorburn from the Royal Free Hospital and the project will be supported by experienced qualitative researchers from the UCL Marie Curie Palliative Care Research Department. The British Liver Trust and PSC Support are closely involved in the project and are represented on the trial steering committee by Andrew Langford and Martine Walmsley respectively to ensure the essential input of patients into the successful delivery of this project. It is anticipated that the project will complete in 2018/9 with the international validation completed by 2020/1. If you have any queries please contact Douglas directly via the email above.