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Patient Reported Outcome Measures

PROMs for PSC?

Patient reported Outcome Measures (PROMs) are used in research and healthcare to better understand the lived experience of particular conditions. However, without a fully validated PROM specifically for PSC patients, researchers and healthcare providers often ask PSC Support which PROMs they should use. We're sharing our focus group findings for the benefit of other investigators and researchers.


Focus Group

In October 2019, PSC Support led a focus group of twenty PSC patients to identify which PROMs currently available assess the most relevant and important issues to people with PSC.



  • Well-designed, validated PROMs should be used in clinical trials at the very least as exploratory endpoints and that the resulting data be consistently reported.
  • Careful consideration should be given to what the clinical trial is hoping to demonstrate, and PROMs chosen carefully, on a case-by-case basis.
  • For recording itch, based on our focus group findings, we would recommend a combination of 5D-Pruritus Scale and the Pruritus Visual Analogue Scale.
  • For recording fatigue, based on our focus group findings, we would recommend the PBC-40 over the Fatigue Severity Scale and the PSC-PRO.
  • For recording general quality of life, while both have their own limitations, our focus group favoured the PBC-40 and PSC-PRO over the SF-36.
  • Patients on clinical trials should be offered the opportunity to complete PROMs electronically in their own time.

Patient Reported Outcome Measures


What PSC Patients think

Focus Groups 3

Patient Reported Outcome Measures in PSC - Focus Group Findings (PSC Support). Original publication date: 29th March 2020

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