Health‐related quality of life in patients with primary sclerosing cholangitis: A longitudinal population‐based cohort study

Background & Aims Data regarding health‐related quality of life (HRQoL) in primary sclerosing cholangitis (PSC) are sparse and have only been studied cross‐sectionally in a disease which runs a fluctuating and unpredictable course. We aim to describe HRQoL longitudinally by using repeated measurements in a population‐based cohort. Methods Every 3 months from May 2017 up to August 2020, patients received digital questionnaires at home. These included the EQ‐5D, 5‐D Itch, patient‐based SCCAI and patient‐based HBI. The SF‐36, measuring HRQoL over eight dimensions as well as a physical component summary (PCS) and mental component summary (MCS) score, was sent annually. Data were compared with Dutch reference data and a matched IBD disease control from the population‐based POBASIC cohort. Mixed‐effects modelling was performed to identify factors associated with HRQoL. Results Three hundred twenty‐eight patients completed 2576 questionnaires. A significant reduction of small clinical relevance in several mean HRQoL scores was found compared with the Dutch reference population: 46.4 versus 48.0, p = .018 for PCS and 47.5 versus 50.5, p = .004 for MCS scores. HRQoL outcomes were significantly negatively associated with coexisting active IBD (PCS −12.2, p