Deciding between medicines or surgery in Ulcerative Colitis

What this research looked at   

Medicines and surgery are both important treatment options for people with Ulcerative Colitis. Surgery may be offered if medicines are not controlling symptoms or are causing side effects that are difficult to manage. Making the choice to continue taking medicines or to have surgery, and the type of surgery to have, can be difficult.  

To help people make the decision that is right for them, Professor Alan Lobo and his research team created a patient decision aid. This is a tool to help people think about their own values, attitudes to risk and personal preferences. It includes high-quality information about the risks and benefits of the treatment options. Decision aids give people knowledge and empower them to make decisions about their care together with their healthcare professionals.      

The researchers created and tested the decision aid in partnership with people with Colitis and healthcare professionals. The decision aid focussed on making choices between continuing taking medicines or having surgery, and choosing the type of surgery (stoma or pouch surgery).    

What the researchers found

The researchers started with some important background research. This helped them decide which information to include in the decision aid and how to present it.

The researchers looked at previous research studies to find out what factors are important to people with Colitis when they make decisions about treatments. These included:

• Having information about the treatments
• Impact of treatments on daily life
• Risks of treatments
• Relationship with their healthcare team

They also looked at previous research to understand how to best describe the outcomes from surgery.

Next, the researchers used a questionnaire in their Inflammatory Bowel Disease (IBD) clinic to find out what information people with Colitis wanted to see in a decision aid, and how that information should look.

People with Colitis said the most important things they need to know about taking medicines are:

• Benefits and risks of taking medicines long-term
• Burden of hospital attendance
• Impact on reproductive health
• Need for steroid treatment
• Impact on personal life

People with Colitis said the most important things they need to know about having surgery are:

• Having information on stomas
• Impact and/or disruption on daily life
• Impact on sexual and reproductive health
• Risks and benefits of surgery

The researchers used everything they found from the previous research and the questionnaire to create a draft of the decision aid. This was reviewed and updated multiple times by their research team until it was felt to be ready for testing.

The draft decision aid was tested with people with Colitis facing the decision of continuing medicines or having surgery, and with healthcare professionals. Overall, people thought the information in the decision aid was useful and that it was presented well.

Feedback from the testing was analysed and changes to the decision aid were made based on this feedback. This included adding space for people to reflect and make notes on their own thoughts and feelings. The final version of the decision aid will be further tested with people in the IBD clinic before being made freely available.

What the researchers think this could mean for people with Colitis 

Surgery is an important treatment option for people with Colitis but it’s a topic that is sometimes avoided or delayed.

This study resulted in a treatment decision aid (in the form of an illustrated booklet) that will be freely available for people with Colitis to use in their IBD clinic. The decision aid will explore the risks and benefits of continuing to take medicines or having surgery and will improve patient knowledge. This will help people with Colitis make treatment decisions based on what matters most to them.

Scientific publications

• Baker DM, Lee MJ, Folan AM, Blackwell S, Robinson K, Wootton R, Sebastian S, Brown SR, Jones GL, Lobo AJ; Development and evaluation of a patient decision aid for patients considering ongoing medical or surgical treatment options for ulcerative colitis using a mixed-methods approach: protocol for DISCUSS study; BMJ Open; 2019; 10; e031845.
• Baker DM, Folan AM, Lee MJ, Jones GL, Brown SR, Lobo AJ. A systematic review and meta-analysis of outcomes after elective surgery for ulcerative colitis; Colorectal Disease; 2020; 23; 18-33.

Who is leading the research: Professor Alan Lobo, Sheffield Teaching Hospitals  
Award amount: £119,967  
Duration: 36 months  
Official title of the application: The development and pilot testing of a patient decision aid to better support patients with ulcerative colitis choose between ongoing medical treatment and surgical treatment options.