Our funding opens doors

“Crohn’s & Colitis UK was kind enough to support my research with a one-year fellowship awarded jointly with the Royal College of Surgeons in 2017 to 2018.

Inflammatory Bowel Disease (IBD) is a relatively underfunded and under-researched area, particularly from the surgical aspect. Financial support from Crohn's & Colitis UK provides a really valuable resource for research surgeons like me to deliver research that can help improve patient care.

At the time of my PhD, the Association of Coloproctology had done a big exercise involving patients, clinicians and gastroenterologists, to identify priority research topics. One of the issues that came up was how we treat Crohn’s anal fistula. It’s an area that not many researchers were likely to be interested in, but it’s something that has a massive impact on the lives of people living with Crohn’s.

The original plan for my PhD was to develop a decision support tool, so someone who needed treatment for a fistula could decide if they want to opt for surgery or a medical route. We wanted to be able to give people percentage chances of different risks and benefits.

We soon realised that the existing surgical and medical literature wasn’t very well documented. So, the first paper on my PhD was a review of the surgical options and their outcomes. We then did the same review for medicines and were able to synthesise the two together. Collaborating with some researchers in Canada, we confirmed what we thought we knew – that biologics are the best option for induction and maintenance of remission in symptoms.

We then realised that if we were going to help people make decisions we have to understand what they need to know. Part of the work funded by Crohn’s & Colitis UK involved interviewing patients who had been treated for fistulas. Patients told us that surgeons in general could be better at telling patients what they need to know about their surgery, particularly around the impact on their fertility and sex and intimacy. We then developed a survey which we ran through about eight to nine centres across the UK, in which we asked people to rate the importance of different questions that patients would want to ask. 

We also put out another paper, looking at three centres with well-established IBD services. Not everyone with symptomatic fistulas will have an operation but we expect everyone to get onto a biologic drug, because that's what the guidelines say. We found that it took an average of six months from referral to starting biologic drugs.

So, while my PhD started out looking at how we make decisions, it turned into a thesis on what we need to do better. Surgeons need to give people the information they want rather than the information we think that they need. And we also need to really start critically looking at our services to see how we can make them more efficient.

I have since worked with a gastroenterologist in Sheffield, Professor Alan Lobo, on a study looking at patients’ opinions and preferences in regard to steroid-resistant Ulcerative Colitis. That piece of work is coming to a close shortly, but it’s looking at what treatments patients want to have and what outcomes matter to them.

We were also successful in getting funding from Crohn’s & Colitis UK to develop a decision aid for patients considering either biologic or surgical treatment for their Ulcerative Colitis. That will hopefully be finished next year.

I hope that the work that I do will help clinicians better communicate with patients about their treatment options, particularly what the patient wants and needs to know. And to help patients make informed decisions about the best treatment for them.”