Pic: Pearl Avery, Clinical Nurse Specialist at Dorset County Hospital, by her clinical poster at ECCO2020, Vienna

A UK nurse-led hospital team working with the IBD Registry has announced the success of an initiative to capture data reported directly by outpatients who have inflammatory bowel diseases (IBD) such as Crohn’s or Ulcerative Colitis using a digital tablet.

A clinical poster, presented at the European Crohn’s and Colitis Organisation (ECCO) Congress in Vienna, 12 – 15 February, outlines how IBD patients at Dorset County Hospital on the south coast of England were able to report their symptoms via a digital tablet at an outpatient clinic.*

“This data can be applied in ways to benefit understanding of the needs of an IBD patient population – for example, enabling us to identify patients who need more interventions.”

Their pseudonymised data was securely recorded in clinical data systems and held as part of the IBD Registry’s dataset.

This marks a step forward for recording Patient Reported Outcomes Measures (PROMs) in IBD.**

Patients were able to record their symptoms such as sleep loss, fatigue, anxiety and depression.

Analysis of the data of two hundred patients, taken over a three-month period from July – October 2019, appears to confirm that fatigue is a widely reported symptom of people living with IBD, alongside pain and anxiety.

Presenting the poster on behalf of the IBD Registry, Clinical Nurse Specialist Pearl Avery, said, “This data can be applied in ways to benefit understanding of the needs of an IBD patient population – for example, enabling us to identify patients who need more interventions.

“Patients who remain in the service could also be targeted with more personalised support and the data can reinforce the business case for new services such as counselling, which our team is now exploring.

“Overall these Patient Reported Outcome Measures collected in a district general hospital setting show promising value for improving the care of IBD patients,” Pearl said.


  • *Avery, K. Blackmore and C. Angel Patient reported outcome measures collected from patients using a digital tablet – early benefits; (2020 ECCO Poster) PDF of poster available here.
  • **While the Registry’s dataset and data capture tools have the ability to record PROMS, it is the clinician who enters the data. This initiative took a further step to enable patient’s to fill-in their PROM that was then incorporated into the patient’s IBD record, so achieving a significant milestone for the Registry of patient-entered information reaching their clinical record.

For further information please contact the IBD Registry on 020 3393 3969 or email support@ibdregistry.org.uk


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