What role for the experts?
25th October 2017
Irritable bowel syndrome describes a group of symptoms which consistently arise together. Whilst it is characterised by the absence of well-defined symptoms and investigation results, in the absence of sinister pathology, the Rome criteria, which are used to define it, have refined the diagnostic measures a number of times.
Indeed the latest iteration of the Rome criteria, (Rome IV), significantly reduced the number of patients meeting the diagnostic criteria. However, they have at the same time attempted to bring diagnostic criteria into line with the current scientific understanding of the pathogenesis.
Several mechanisms are involved in the genesis of symptoms, including disturbances in motility, visceral hypersensitivity, altered mucosal and immune function, altered microbiota and abnormal central nervous system processing. Within an individual patient several mechanisms may co-exist, making clear elucidation of causation challenging. Whilst a number of experts have attempted to develop clear diagnostic pathways and investigations to guide treatment, the appropriate treatment for individual patients often eludes practising clinicians and their patients. This often leads to both clinician and patient feeling frustrated and despondent.
Set within this background the NICE guidance makes clear “People with IBS should be given information that explains the importance of self‑help in effectively managing their IBS. This should include information on general lifestyle, physical activity, diet and symptom‑targeted medication.” There is no question that all of these interventions may have positive effects on the symptoms of irritable bowel syndrome, but is often challenging in the setting of a relatively short appointment to elucidate clearly which changes are right for an individual patient. As a consequence, clinicians and patients sometimes feel as if they are left ‘fumbling in the dark’ and patients may embark upon what is on occasion, a long, and at times, expensive journey to find the answers for themselves.
Patients seek help from a range of practitioners with varied success. Many resort to google and patient chatrooms where they receive advice and wisdom of variable quality and efficacy. This is also often the experience of those using the National Health Service.
So what role for experts?
A firm Diagnosis
The symptoms of irritable bowel syndrome are common to many other conditions and patients often have anxieties about what other conditions they may have. Doctors have the training to elicit atypical symptoms and ‘red flags’. They also have access to diagnostic tests to exclude other conditions and affirm the diagnosis. All patients should have a full blood count, C reactive protein or erythrocyte sedimentation rate and antibody testing for coeliac disease. Whilst not recommended in the current NICE guidance, consideration should be given to stool testing for calprotectin and faecal elastase. Many patients spend considerable time before a firm diagnosis is reached, yet this is one of the few things that doctors have to offer.
An Overview of the treatments available
Whilst all of the available treatments can be found on ‘Dr Google’ it is difficult for patients to decide which ones are evidence based or likely to work for them and which ones are a waste of money, or worse, may cause them potential harm. Doctors, gastroenterologists, dietitians and other professionals have the training and experience to be able to assess the evidence and sort fact from opinion. Professionals also have the ability to give a broad overview of all the available treatments and whilst many have their individual areas of expertise all should be able to guide patients to the help most appropriate to them. The relationship between patients and their healthcare professionals should enable the patient to access the treatment most suitable for them and fits with their lifestyle.
Professional distance or close compassion
Professionals often struggle to balance the two. We need to be able to remain objective enough to use our scientific understanding to define which treatments are likely to help our patients. Simultaneously patients often present with significant psychological distress, both because of their symptoms and sometimes their drivers.
We need to offer treatments based upon rational understanding of disease processes but also compassion and sympathy to patients in distress. In addition we need to empower patients to take control of their lives and make the necessary changes that will enable them to manage their symptoms.
Supporting Behaviour change
We know that patients are often keen to take control of their disease and to make the changes required to do this, but changing behaviour is often challenging. As healthcare professionals, we are often in a privileged position, we are allowed into the most private and personal aspects of people’s lives. That privilege comes with responsibility. We understand the challenges individuals face in ways that few others can. We therefore have a responsibility to support patients to make changes that may help their symptoms. Sometimes this is as ‘simple’ as encouraging them to eat breakfast. However, on occasion, more complex dietary and psychological change is required. We are well placed to aid, support and on occasion challenge patients along their individual journey, working alongside them to help individuals to find what works for them. Whilst we don’t always have a magic bullet, we can always care.
Article by Dr Simon Smale, Gastroenterologist and Medical Adviser to The IBS Network.