2026. EASL Congress Abstract and Poster: Investigating the burden of illness in primary sclerosing cholangitis (PSC): A multinational study
Plain-Language Summary
An international study surveyed individuals living with PSC in the U.S., U.K., Germany, France, and Italy to understand the impact of the disease on quality of life. A particular focus was given towards the impact of pruritus (itch) associated with PSC.
The survey found that the majority (62%) of respondents made lifestyle changes due to their fatigue, a common and often severe symptom of PSC. Almost half (46%) of respondents made employment changes (e.g., reducing hours or changing jobs) because of their PSC. Compared to the general population, people living with PSC had worse fatigue and worse overall health-related quality of life. Poorer quality of life was associated with more severe pruritus.
These findings underscore the significant impact of PSC on daily life directly caused by symptoms of the disease.
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Authors: Deepak Joshi, Guy Lacey, Jolan Terner-Rosenthal, Lucia Quadrado, Robin Howard, Jane Moorhouse, Oliver Webb, Sarah Smart, Donna Rowen, Philip A. Powell, Brian Thorsen, Ingo van Thiel, Martine Walmsley, Angela Leburgue, Francesca Scarpa, Marlyn J. Mayo
Background and Aims: Primary sclerosing cholangitis (PSC) is a rare, chronic liver disease associated with progressive damage to hepatic bile ducts and cholestasis-related symptoms such as pruritus and fatigue, which can impair health-related quality of life (HRQoL). This study aims to better characterize the burden of illness in symptomatic PSC patients.
Method: A survey of patients with PSC matched to a general population sample was initiated in the US, UK, France, Germany and Italy. The web-based survey sent through patient advocacy groups with links to questionnaires contained both quantitative and qualitative elements, including validated outcome measures (e.g., PROMIS Fatigue, SF-36). Pruritus severity was measured by the Adult ItchRO (0-10 scale; 0 = no itch; 10 = worst itch). T-statistics and linear regression analyses were performed to examine the relationship between pruritus severity and HRQoL. Only survey data from the US, UK, and France were available at the time of submission.
Results: 242 individuals (38% male; mean [SD] age 42.3 [12.3] years) were included of which 121 were patients with PSC currently experiencing pruritus (US: n = 50, UK: n = 50, France: n = 21) and 121 from an age- and sex- matched general population cohort (US: n = 50; UK: n = 50; France: n = 21). The median (SD) ItchRO in patients with PSC was 5 (2.30) indicating moderate severity, with 62% of patients reported having to make lifestyle adjustments due to fatigue. Pruritus severity (ItchRO) and fatigue (PROMIS fatigue) were significantly correlated (r = 0.243, p = 0.007) and this relationship remained significant when controlled for country, age, and sex. Overall, patients with PSC had significantly (p<0.05) lower HRQoL scores across the majority of SF-36 domains vs. the general population. Furthermore, an increase in pruritus severity was associated with worsening HRQoL across the physical component summary, role-physical, bodily pain and social functioning SF-36 domains. PSC symptoms negatively impacted patients’ ability to work in half of the population.
Conclusion: Initial findings demonstrate that PSC is associated with debiliating physical, emotional, and social burden, with pruritus severity linked to fatigue and reduced physical function. These symptoms continue to be present and inadequately managed despite multiple medications used, underscoring an unmet need in the treatment of PSC.