Decision-making in IBD dysplasia
Research type
Research Study
Full title
Optimising colorectal cancer risk communication and shared decision-making between clinicians and their Inflammatory Bowel Disease patients diagnosed with dysplasia.
IRAS ID
249003
Contact name
Misha Kabir
Contact email
Sponsor organisation
London North West University Healthcare NHS Trust
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
Patients with Inflammatory Bowel Disease live with the burden of having an increased risk of developing bowel cancer. We try to reduce this risk by looking for and removing pre-cancerous cell changes in the bowel wall lining called ‘dysplasia’ during surveillance colonoscopy. The time it takes for dysplasia to develop into a cancer has varied hugely in studies. This makes patients, diagnosed with dysplasia, uncertain of their actual risk of developing cancer. Doctors must advise patients with dysplasia to either have surgery to remove their large bowel, or to have more frequent colonoscopies. Weighing up the risks and benefits of these options, in the face of uncertainty, is difficult for patients. We do not know enough about how best to help these patients make these decisions. Our project aims are to find out more about the factors that influence these patients’ decisions - what makes them decide to have a colectomy or stay on more frequent surveillance when faced with a condition that increases their colorectal cancer risk. If they have already made these decisions, we want to know about how well informed they felt before making this decision and whether they regret anything. We want to know what clinicians can do to make sure that patients feel well informed and powerful enough to collaborate in shared decision making. We aim to obtain this valuable knowledge by conducting focus groups and interviews with patients and clinicians. Our findings will help in the creation of a high quality decision aid for patients. We hope that the decision aid will empower patients to choose the right management decision for them. In addition we will also create expert consensus guidance for clinicians so that communication with future patients can be optimised.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
18/SC/0466
Date of REC Opinion
24 Aug 2018
REC opinion
Further Information Favourable Opinion