A multinational survey assessing the impact and burden of pruritus on patients with primary sclerosing cholangitis

BACKGROUND: Pruritus is a common primary sclerosing cholangitis (PSC) symptom that greatly impacts quality of life (QoL; sleep, fatigue) and, in severe cases, may be an indication for liver transplantation. Currently, there are no effective pruritus treatments for PSC. This survey focuses on the presentation/severity of pruritus in PSC and on the participants' perspective of the broader burden on QoL. METHODS: A multinational survey was conducted over 8 months with individuals diagnosed with PSC. A 36-item questionnaire focused on the pruritus severity scale (0, no itch; 10, worst itch imaginable) and impact on QoL was posted on approved websites; data were collected anonymously and analyzed using descriptive statistics. RESULTS: Of the 482 respondents, 91% and 34% had experienced and were currently experiencing pruritus, respectively. The median worst pruritus score was 6, and 45% (74 of 164) reported the pruritus episode lasted ≥1 month. Pruritus was associated with a higher degree of sleep disturbance and worsening fatigue. In half of those who reported pruritus, the symptom led to disruption of daily activities. Twenty-two percent of participants reported missing work or school. Pruritus negatively impacted mood changes in >50% of respondents. Most commonly used pruritus treatments were antihistamines, ursodeoxycholic acid, cholestyramine, topical creams/ointments, and rifampin. Forty-nine percent reported using ≥2 medications, and of those, 75% experienced "only partial" or "no relief." CONCLUSIONS: Cholestatic pruritus in PSC has a major adverse impact on QoL, interferes with daily activities, and is inadequately treated in the majority of respondents. These unmet needs highlight the importance of developing safe/effective antipruritic treatments for PSC.