DECIDE - A Patient Decision Aid for Dysplasia in IBD

• Research type

  Research Study

• Full title

  Development and evaluation of a decision aid for management of dysplasia in patients diagnosed with Inflammatory Bowel Disease

• IRAS ID

  331406

• Contact name

  Omar Faiz

• Contact email

  omar.faiz@nhs.net

• Sponsor organisation

  London North West University Healthcare NHS Trust.

• Duration of Study in the UK

  0 years, 11 months, 29 days

• Research summary

  Dysplasia is widely accepted as a pre-cancerous change in the large bowel, however the evidence on the potential of these changes to progress to cancer is of low quality and inadequate. Due to this, international guidelines recommend shared decision making between the patient and their doctors. Studies looking specifically at factors that affect decision-making in patients with Crohn's/Ulcerative Colitis have found that doctors' recommendations and the need for information played an important role in decision-making, and patients often quote the lack of reliable evidence surrounding dysplasia prognosis as a reason for their difficulty in making a decision. In fact, a recent UK nationwide survey of patients with Ulcerative colitis and dysplasia found that 23% of patients did not feel well informed about treatment of dysplasia, and 6% felt ‘badly informed’.
  Through the previous DECIDE study (Delphi Expert Consensus Statement on Inflammatory Bowel Disease Dysplasia Shared Management Decision-Making) we developed a Decision Aid document for patients who have been diagnosed with dysplasia and Inflammatory Bowel Disease and who now face a decision regarding how to manage the dysplasia, to help them with this process. Decision aid documents exist in other areas of healthcare and have been shown to help patients improve their knowledge and understanding of their condition, their values with regard to the treatment options for their condition, and overall increased their confidence in their decision and satisfaction with the process. The purpose of this study is to further develop the Patient Decision Aid and test its usefulness and effectiveness at helping patients with dysplasia make decisions in a real-world setting.

• REC name

  London - Camden & Kings Cross Research Ethics Committee

• REC reference

  23/PR/0936

• Date of REC Opinion

  6 Oct 2023

• REC opinion

  Further Information Favourable Opinion