Patient-Reported Outcomes (PROs) are how patients describe their symptoms, daily limitations, and quality of life — in their own words.
Patient-Reported Outcome Measures (PROMs) are tools or questionnaires that measure those experiences in a structured, scientific way. PROMs turn lived experience into data that clinicians and researchers can use.
Why this matters for PSC
Fatigue affects 83–90% of people with PSC and is described as a “crushing”, “whole‑body heaviness” that often starts the moment patients wake up. It brings physical weakness, slowed thinking, and rapid energy collapse, with no relief from rest. Because it doesn’t correlate with liver tests or disease stage, fatigue is difficult to measure or treat, yet it remains one of the highest‑impact symptoms due to its profound effect on daily functioning, work, and social life.
Pruritus affects 40–60% of people with PSC and is often described by patients as a “suicidal itch.” It is unrelenting, sometimes painful, and intensifies at night, leading to severe sleep disruption, skin damage, and significant psychological distress.
PSC-specific PROMs bridge the gap by
- Capturing key symptoms accurately
- Reflecting patient experiences in both research and clinical care
- Providing meaningful, patient-centered endpoints for clinical trials
- Enhancing communication between patients and clinicians
