During this year’s European Crohn’s and Colitis Organisation (ECCO) congress, Professor Charlie Lees, Consultant Gastroenterologist, Western General Hospital, Edinburgh, will be participating in a Galapagos industry symposium, talking on the topic of achieving holistic remission in people living with IBD. We caught up with Professor Lees and had the opportunity to ask him what is meant by holistic remission and how does it fit into the treatment and management of IBD.
Professor Lees, is IBD a significant healthcare challenge and why do we need a new management approach?
“Across Europe, an estimated 2.5-3 million people are affected by Inflammatory Bowel Disease (IBD), which includes Ulcerative Colitis (UC) and Crohn’s Disease (CD).1 Despite significant scientific progress in the understanding of chronic inflammatory diseases, patients continue to face challenges in managing their IBD. Unmet needs vary from patient to patient although some of the most common that we see are speed of onset of the therapy, tolerability, immune response, duration of efficacy and mode of administration. All of these factors can have a big impact on a patient’s general wellbeing, regardless of whether they are clinically in remission or not.
To understand why we need a new management approach, we should explore what we mean by clinical remission. In simple terms, clinical remission focuses on eliminating symptoms entirely or at least seeing an extensive reduction. We use a number of different measures to determine clinical remission in IBD. For example, we use a measurement called the Mayo Clinic Score (MCS), we also look for a decrease in stool frequency and no rectal bleeding.
But, new thinking is beginning to question whether measuring a patient’s clinical remission in IBD is enough to give us a true picture of their overall health and wellbeing. There is a growing interest in the concept of holistic remission. This means looking beyond how well a patient’s disease is clinically controlled and considering the impact on many other parts of a patient’s health such as fatigue, mental health, depression, and anxiety. We want to use IBD treatment to meet each patient’s own health goals and needs according to their lifestyle and what is important to them.”
Shouldn’t the focus for managing IBD be on reducing inflammation?
“We know that inflammation is the root cause of IBD and it is the inflammation that causes the gut damage and a lot of the symptoms that patients experience, so of course this should continue to be a priority focus. What I am talking about is looking beyond evaluating clinical measurements as a way of determining if a person should feel better and to be curious about each person’s true overall health. Patients’ symptoms are often influenced not only by the damage done by inflammation, but also by environmental and lifestyle factors. The interplay between all these factors, affects a patient’s experience of IBD management and their quality of life, and we must take that into account when approaching treatment decisions and strategies.”
What is meant by holistic management: Where are we now and where are heading?
“First, we need to recognise that there is a current disconnect between remission goals and a patient’s personal goals. Patients’ lives are complicated, and many factors influence their health i.e. lifestyle, environment, genetics – all this needs to be considered when formulating treatment strategies. Treating a patient based purely on clinical remission goals doesn’t give us a clear picture of a person’s true overall health and their personal health goals. This is the disconnect that we are hoping to resolve through approaching remission holistically. We know, for example, that pain is a top-10 motivating factor for patients with IBD and that is not measured or addressed through clinical remission measures.
We need better aligned and more closely integrated health teams with an understanding of patient needs and health goals. We also need better patient reported outcome (PRO) measures to allow us to assess the holistic elements of remission and give patients a better range of treatment options that factor those in. And in addition to this, we should be having open conversations with our patients about their IBD and its impact on their lives, and for them to in return feel confident and comfortable to share that information and demand better care.”
How far away are we from achieving holistic remission for IBD patients?
“As an IBD community, we are slowly making progress and treatment advances are helping to enable this holistic approach. For example, advanced therapies were originally only able to be delivered intravenously or subcutaneously, which greatly limited the flexible treatment choices that we were able to offer patients that would fit around their lifestyle. Since then, treatment has been made available that can be taken orally, which means that patients are no longer tied down to appointments and infusions to receive their treatment. This flexibility that oral treatment offers potentially opens up a wide range of benefits to patients such as less limitations on work, family, travel, and brings us a step closer to holistic remission.
Digital health tech is also growing, as a result of necessity during the COVID situation and it offers a wealth of opportunity. Without taking away the human element of care, the development of next generation digital platforms, promises passive data collection over time, allowing us to start building predictive treatment algorithms and models which will help us better advise patients during distinct and various points of their IBD journey. This two-way exchange of information will help us improve our ability to offer help and tailor treatment and at the same time gives patients tools to help navigate their IBD and feedback on what is and isn’t working for them.”
Finally, for you, what does the future of IBD management look like?
“The ultimate future of IBD is a world with no IBD, and that includes preventing it from happening and curing people who have it, which is no easy feat. In the interim we need a pipeline of new, advanced therapies that work better for more patients and that also work well as alternative treatments for patients who have exhausted other therapy options. These therapies should be more targeted with a range of modes of administration, while being well tolerated with an excellent safety profile and accessible and affordable to all patients. If we couple that with non-invasive monitoring strategies that take into account digital health tools which can seamlessly integrate into patients’ lives, then we are well on our way to vastly improving the quality of life for many IBD patients.”
- Burisch J, Jess T, Martinato M, Lakatos PL; ECCO -EpiCom. The burden of inflammatory bowel disease in Europe. J Crohns Colitis. 2013 May; 7(4):322-37
++This article was developed and funded by Galapagos++