PSC Support 2019 Research Survey


PSC Support 2019 Research Survey Results with logo

Thank you!

Thank you to everyone who took the time go give views in this survey. We appreciate it was long. Your input is now being used to advocate for better designed PSC research and to make the case for the need for improved healthcare services. THANK YOU!

Information about our 2019 Research Survey

Survey details

  • Open to: people with PSC only (pre and post transplant).
  • Shared through: PSC Support patient network.
  • Survey duration: 52 days (26 July 2019-15 September 2019 inclusive).
  • Respondents: 377 people responded.
  • Incentive: chance to win £50 Amazon voucher. 229 respondents entered for draw.
  • Personal data: Q59 asked for email address for competition entrants. The winner was notified on 15 September and then all email addresses were deleted from shared results.


  • Long survey! Average completion time: 17 minutes
  • Patients self-reported any diagnoses and clinical history.
  • 59 questions but logic applied to questions to force skipping of irrelevant questions to minimise burden on respondents.


This is real world PSC! We thought carefully about the questions, and consulted other patients, academic researchers and one pharmaceutical company to ensure that every question was valuable.

Survey Results

We will produce a full report and summary in due course, but for now, here are the question responses (added 24 September 2019):

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