Patient Reported Outcomes Using Digital in Ulcerative Colitis PROUD-UC

• Research type

  Research Study

• Full title

  PROUD-UC: Patient Reported Outcomes Using Digital in Ulcerative Colitis: What impact does routine collection digitally of the Inflammatory Bowel Disease (IBD)-Control Patient Reported Outcome Measure (PROM) have on the ability to generate recommended sets of outcomes for patients with ulcerative colitis and the patient’s use of health care resources?

• IRAS ID

  276316

• Contact name

  Dr Sherrill Snelgrove

• Contact email

  researchgovernance@swansea.ac.uk

• Sponsor organisation

  Swansea University

• Clinicaltrials.gov Identifier

  1009, SAIL Databank Reference

• Duration of Study in the UK

  1 years, 2 months, 31 days

• Research summary

  Capturing patient reported outcome measures (PROMs) is critical to delivering Value-Based Healthcare (VBHc), and increasingly advocated for supporting patient-centred care, informing decisions and driving service quality and resource allocation in clinical settings.
  Ulcerative Colitis (UC) is more common in the UK than many other European countries, and Inflammatory Bowel Disease (IBD) in the UK is rising. Many tools have measured outcomes and quality of life in IBD, but none has found widespread routine use in clinical settings. For many patients, the disease has a relapsing and remitting pattern and hospitalisation and surgery may be required if medical therapy fails. Immuno-suppressive therapy with “biologics” has improved disease control but at greater cost.

  This two-year study will evaluate the extent to which digital routine collection of the IBD-Control PROM impacts on patient use of healthcare resources and the ability to generate recommended sets of outcomes for patients with UC. This will be achieved through estimating and comparing the healthcare resource utilisation and cost in primary and secondary care in the patient population before and after PROM collection.
  The study will also analyse the demographic and clinical characteristics of the patient population, as well as their uptake of the IBD-Control PROM over time. Finally, the study will determine the completeness of the ICHOM dataset for IBD using PROM data, linked to routinely collected primary and secondary care datasets through the SAIL Databank.
  The population for this study comprises patients with a diagnosis of UC receiving biologic therapy, and attending IBD clinics in Wales, primarily focussing on Swansea Bay, Aneurin Bevan, Hywel Dda and Cardiff & Vale University Health Boards.

  It is anticipated that this study will provide a better understanding of outcomes that matter to patients, the benefits and challenges of implementing PROMs in routine care, inform decision making around healthcare resource utilisation in clinical settings.

• REC name

  N/A

• REC reference

  N/A