Factors That Reduce Health-Related Quality of Life in Patients With Primary Sclerosing Cholangitis

BACKGROUND & AIMS: Health-related quality of life (HRQL) is frequently reduced in patients with chronic liver disease, but there are limited data from patients with primary sclerosing cholangitis (PSC). We aimed to evaluate HRQL and its potential determinants in 2 population-based cohorts of patients with PSC and to study the prevalence of fatigue among these patients. METHODS: Validated questionnaires were used to measure quality of life (the Short-Form 36 [SF-36] and the chronic liver disease questionnaire), fatigue (the fatigue impact scale), and psychological distress (the hospital anxiety and depression scale) in 182 PSC patients residing in Sweden or England. Results were compared with those from the general population (controls). Regression analysis was performed to identify factors independently associated with HRQL. RESULTS: Patients with PSC had significantly lower scores from several areas of the SF-36, compared with controls (P < .05). Age (beta = -0.62 to -0.21, P < .05) and systemic symptoms (beta = 3.84-15.94, P < .05) such as pruritus were associated with lower scores from specific areas of the SF-36; serum level of alkaline phosphatase (beta = -1.12 to -0.75, P < .05), and large-duct PSC (beta = -15.35 to -10.05, P < .05) were associated with lower scores on mental health questionnaires. The proportion of patients with significant fatigue, depression, or anxiety did not differ between patients and controls (P > .05). CONCLUSIONS: Quality of life is impaired in unselected patients with PSC. Fatigue does not seem to be a specific symptom of PSC. Older age, large-duct disease, and systemic symptoms seem to reduce HRQL in patients with PSC.