Improving access to patient information for the treatment of ulcerative colitis and Crohn’s disease

Thanks to funding through NHS Lothian Charity’s Small Grants programme, the Gastrointestinal (GI) Unit team have been able to produce a short information video for patients with ulcerative colitis and Crohn’s disease, helping to support timely treatment in an easy to understand way.

Inflammatory Bowel Disease is a chronic, incurable, relapsing and remitting condition characterised by diarrhoea, abdominal pain, fatigue, malaise and lethargy. Ulcerative colitis and Crohn’s disease are types of IBD common in Scotland. Local evidence has suggested that Lothian has a high prevalence of these conditions, with approximately 0.86% of the population affected.

Many individuals are diagnosed as teenagers and young adults which can have significant impact on their education, ability to work, family life, social life, relationships and mental health. Treatment has changed greatly in the last 10 years with the development of biological drugs. One of these biological drugs, Ustekinumab, can frequently result in improvements in gut symptoms and overall quality of life, and can be life changing for patients.

As there can be significant side effects with Ustekinumab, it is vitally important that all patients are provided comprehensive advice and guidance prior to starting these drugs. With a six week wait for appointments to meet an IBD specialist nurse or pharmacist for this one-to-one appointment, the team at the GI Unit at the Western General Hospital investigated ways to facilitate patients getting access to this advice and information more quickly and in a way that is useful, easy to understand and accessible.

The team applied for funding to make a short video with al the information that a patient would be provided with at an appointment, including what Ustekinumab is and how it works, how it should be administered, side effects to be aware of, and signposting for further help and advice. The benefit of the video is that patients can access the information at any time, and as many times as they want, to help make a truly informed decision about their treatment.

Dr Ian Arnott, Consultant Gastroenterologist in the GI Unit at the Western General, explains more:

“Patients with ulcerative colitis and Crohn’ disease are prescribed Ustekinumab for the treatment of these chronic conditions. Before treatment, patients are counselled by a specialist nurse or pharmacist as it is given by injection and can have significant side effects such as diarrhoea and skin reactions. It is therefore vital that all patients are fully informed about the risks prior to starting treatment.

“As there is a waiting list for appointments with the specialist nurse or pharmacist, treatment can be delayed. This may result in some patients needing admission to hospital or steroid treatment which could be avoidable if they were able to start the treatment sooner.

“We had received funding from NHS Lothian Charity in 2019 to make a short video to support group counselling for infliximab and adalimumab that are first line biological drugs to help reduce inflammation. The feedback following these sessions showed 100% approval for video-based advice and guidance. We therefore looked at how we could replicate that same process and success for Ustekinumab.

“We applied for further funding to produce two short videos for Ustekinumab, one outlining the benefits, risks and alternative treatments and the other with detailed information on how to administer the injection. The benefit of this is that people can watch this as many times as they need to in order to make an informed decision about their treatment. They can also quickly access specific information at times when it is most relevant, for example to double check on side effects and what to do if they experience any, or to remind themselves of the procedure for administering the injection. This compliments the care that they receive from their IBD team, as there is still an opportunity to discuss any issues with an IBD nurse after they have watched the film.

“As a result of this video, patients have been able to start treatment earlier avoiding the adverse outcomes above. They have been able to review the information at any time, and as often as they want, to allow truly informed decision making. The consistency of information given to all patients across practitioners and across time is also hugely beneficial.

“Thanks to NHS Lothian Charity for funding and also to Graham from Ogilvie Design who animated and produced the film and Crohn’s and Colitis UK who provided information we could use for the script, and who are helping us promote our videos to over 300,000 patients across the UK.”

Image Credit: Ogilvie Design