PSC Quality of Life Study

Publications:

Marcus E, Stone P, Thorburn D, Walmsley M, Vivat B. Quality of life (QoL) for people with primary sclerosing cholangitis (PSC): a pragmatic strategy for identifying relevant QoL issues for rare disease. Journal of Patient-Reported Outcomes. 2022 Dec;6(1):1-2. https://doi.org/10.1186/s41687-022-00484-5

Marcus E, Stone P, Krooupa AM, Thorburn D, Vivat B. Quality of life in primary sclerosing cholangitis: a systematic review. Health and quality of life outcomes. 2021 Dec;19(1):1-7.

Marcus E, Thorburn D, Stone P, Vivat B. Quality of life (QoL) for people with rare diseases: Recruitment challenges and consequences in a study pilot-testing the UK-PSC-QoL, a provisional QoL tool for people with primary sclerosing cholangitis (PSC) in the UK. 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020). Orphanet J Rare Dis 15, 310 (2020). https://doi.org/10.1186/s13023-020-01550-1

Marcus E. Developing and pre-testing a measure of quality of life for people with primary sclerosing cholangitis (PSC) in the UK (Doctoral dissertation, UCL (University College London)). May 2020.