Ulcerative Colitis
Dr Misha Kabir

Institution: St Mark’s Hospital and Academic Institute
Title: Developing a personalised patient decision aid to improve the quality of shared decision-making between ulcerative colitis patients diagnosed with dysplasia and their clinicians.
Project start date: 9th July 2018
Completion date: 8th July 2019

Summary:

Patients with Inflammatory Bowel Disease (IBD) live with the burden of having an increased risk of developing bowel cancer. This study aims to develop an information and decision tool to support these patients. The full study will recruit patients with Crohn’s disease and ulcerative colitis. Guts UK is funding the part of the study focused on ulcerative colitis.

Doctors try to reduce IBD patient’s risk of developing bowel cancer by looking for and removing pre-cancerous cell changes 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. Doctors do not know enough about how best to help these patients make these decisions. This project’s aim is to find out more about the factors that influence patients’ decisions. Dr Kabir and her colleagues will learn about the best methods of counselling patients. Their findings will help in the creation of a high quality and patient-friendly decision aid. They hope that the decision aid will empower patients to choose the right management decision for them.

The project will involve a number of interviews and questionnaire surveys of patients and doctors. Dr Kabir and her colleagues will directly ask inflammatory bowel disease patients their thoughts and opinions about what dysplasia means to them and if given this diagnosis would they rather have surgery or have more regular colonoscopies and why. They will speak to patients who have previously been given a diagnosis of dysplasia and ask them how difficult they found it making these decisions. They will ask about the ways to improve how doctors communicate to patients about what it means to have dysplasia, the risks of cancer, and what their management options are. They will also talk to doctors and nurses who look after inflammatory bowel disease patients and have had to talk to their patients about dysplasia and their options.

Dr Kabir and her colleagues will feedback to the doctors and nurses on what they have already learnt from our interviews with the patients. Together they will then produce a new decision aid that patients and doctors can use to help patients feel more informed and confident in the choices they make about their care.

Patients will benefit from this project as they will have access to patient-friendly information presented in a personal manner. Hopefully this will make them feel less anxious and more empowered to choose the right management option for them. Doctors and nurses specialised in inflammatory bowel disease care will benefit from the project results as they will have a better understanding of what factors influence how patients make decisions. This will enable them to know how best to counsel patients with dysplasia.

By improving our knowledge about what matters most to patients, Dr Kabir believes this work will improve how doctors help inflammatory bowel disease patients with dysplasia make difficult decisions like whether or not to have surgery.