The decision to expand use of the True Colours platform for people with ulcerative colitis follows a successful six-month trial involving around 60 patients at the John Radcliffe Hospital, supported by the National Institute of Health Research (NIHR) Oxford Biomedical Research Centre (BRC).
Ulcerative colitis is an inflammatory disorder that affects the large bowel (large intestine, colon). It can cause irritation and diarrhoea. Typically, people are diagnosed in their early twenties.
“This is a group of patients in the prime of their lives, who are trying to sort out relationships, families, jobs. If you have ulcerative colitis it can be very difficult to progress; it can affect your quality of life and economic earnings,” says Dr Alissa Walsh, Clinical Research Fellow in Gastroenterology, who carried out the trial.
More than 300,000 people in the UK live with ulcerative colitis, and it is estimated that the condition costs the UK economy around £1 billion per year (an average £3,084 per patient)
True Colours is a secure web-based system that was originally developed for psychiatric conditions, but has the potential to be used to manage any chronic illness. It can be accessed on PC, laptop, phone or tablet.
Patients receive a daily e-mail from which they access the platform. They complete standardised questionnaires about symptoms and quality of life that take just a couple of minutes.
Based on their answers, the patient is given a score and advised on any steps to take; above a certain score they are asked to phone the Oxford University Hospitals IBD advice line. As soon as the data is entered, it can be seen by the clinical team.
“We know that if people act on their symptoms and call earlier, they do better. It decreases the amount of time ‘in flare’ that they have and can decrease hospitalisation.”
“It’s not uncommon for us to see someone in clinic who has been unwell for two months, but hasn’t wanted to bother us and has waited for their appointment. With a system like this we can be alerted to that patient being unwell and take action much sooner.
“Patients have told us that even though they were doing all the work in terms of inputting all the data, they felt that they were being better cared for. They also had a greater sense of empowerment because it was making them more aware of their symptoms, making them feel more in control,” she explains.
She says that the True Colours tools can help not just with immediate symptoms, but also in identifying the longer-term pattern of the illness, giving “the granularity that allows us to mathematically model why people’s symptoms fluctuate”, and a better picture of the biology of the disease.
“Some people can be up and down; others are running along in remission, so it’s important to have that backward look over six months – and we’ve never had that before. In the past a patient might come to a clinic and say they’re OK and forget to tell you that a few weeks ago they were off work because they were unwell; or that they needed a course of steroids. If you’ve got it there on a graph, it’s easy to see, and patients have responded really well to that, because it shows a clear trajectory over a period of time in a matter of seconds.”
One patient who undertook the clinical trial is Nick, aged 48, from Bicester. He said:
“The weekly email questionnaire was a great idea. If I had any sort of flare it would be quickly identified and the team were all over it, managing my medication and giving me such swift support. It really did feel like I had my own private health team. You do need to answer the questions honestly and your condition can be managed treated correctly by the professionals.
“Seeing that your answers put you in the ‘green zone’ is such a positive mental thing that it drives you on to continue with the medication, as the dark days of not knowing are not something I would want to go back to. Without wanting to jinx things I have been ‘flareless’ for over 18 months now and although tiredness is still a major factor I am back to a relatively normal life. I am sure that without the dedicated support of Dr Walsh and the True Colours team I would not be handling UC the way I am today.”
Another patient, Melanie, aged 25 from Oxford, said:
“Completing [the short questionnaire] over several weeks and months, allowed me to paint an accurate picture of how my symptoms were fluctuating following the change in my treatment and, importantly, also relayed this information to my clinical team. This gave me peace of mind, as I felt confident that they were able to monitor my condition between outpatient appointments, and would be able to identify when the responses I was giving to the questionnaire might be indicative of the start of a flare. At my outpatient appointments, my IBD team were able to use the data stored in the app to pull up graphs showing trends or any significant changes in my answers. It can be quite difficult to accurately relay your symptom history over a period of several months in these appointments, so it was incredibly useful to have such accurate data there and ready; my IBD team seemed to already have a good idea of how I was doing before I walked in the door!
“I am constantly anxious about experiencing another serious flare up. Sometimes it feels like there is nothing you can do to prevent this, and that you are completely at the mercy of the disease. True Colours has a feature where you can add personal questions, which I found useful. I was able to monitor my own personal triggers, or suspected triggers, and track how they aligned with any worsening of my symptoms. This allowed me to identify factors that I felt I may be able to control to help improve my condition whenever it felt that it was starting to deteriorate. True Colours also helped me to feel confident that I would be able to identify the start of a flare, and seek advice from my clinical team early on.”
One of the significant benefits of the system is that it reduces the number of unnecessary visits to the hospital, making better use of NHS resources.
“If patients are in remission, do we need to be dragging them to the outpatient clinic?” Dr Walsh asks. Ulcerative colitis is a chronic disease and you never get discharged from clinic. Incidence is rising and the clinics are getting fuller. Anything that can help to reduce that would be hugely advantageous.
“With this system, we’ve done some mathematical modelling: if we look at a patient’s symptoms and quality of life, we can see with 99% accuracy whether we need to make a change in their treatment at clinic. So we could adopt a better strategy with our appointments – triaging clinic better so that when patients are well, we don’t need to see them, so an appointment becomes available for a new patient, who really does need to see us. We don’t want to clog up the clinics with well people.
“If we can look at symptoms remotely, it may improve how we use our resources – and that’s crucial for the NHS, because it could result in big cost savings,” she adds.
The team at the John Radcliffe sees around 1,850 people with UC. Of these, around 20% are on the most expensive biologic medication, and the plan is to roll out the True Colours service to all patients on biologic therapy – around 370 patients, as well as similar patients in Winchester.
The team is also developing a version of the system for Crohn’s disease, the only difference being that it uses a different symptom score.
“Ideally we would like every single patient on this programme, but we’ve decided to focus on those patients on the most effective, resource-heavy medications to see whether we can improve their care, but also whether we can predict over time which medication is most suitable for each patient,” Dr Walsh explains.