Did you know that 1% of all IBS diagnoses are wrong, and reveal themselves to be cancer within a year? When I first read this, I was horrified. I am a GP with 20 years in healthcare and I specialise in improving systems for delivering better care for patients. Conversely, my interest in IBS and gut health is selfish as I have IBS-D myself and want to find ways to improve my symptoms.
Delivering care in the real world
In my latest project I have combined my systems and IBS work to try and understand more about what goes right and what goes wrong when IBS care is delivered in the real world. I therefore did a brief literature review before delving deep into the health records of 78 patients to understand the underlying patterns that are not visible when delivering routine care.
So, what is IBS?
Before we start with that, I want to set the scene with a summary of IBS. As clinicians we know that it is a functional disorder of the gut which is sub-divided into Diarrhoea, Constipation and Mixed types. Whilst medical school drummed into me, that it is a diagnosis of exclusion, more modern thinking emphasises that it is a positive diagnosis in the first instance. That is to say, the patient should meet the Rome 4 criteria before we exclude other diseases. These state there must be 6 months abdominal pain (at least 1 day a week in the past 3 months) in addition to two of:
- A relation to defaecation
- A change in stool form
- A change in stool frequency
Reviewing what we already know
Reviewing the literature shows that 1in 5 of us have gut-related issues. The UK prevalence of IBS is 11% of the population, however the coded diagnoses sit closer to 5%. The undiagnosed patients have the same symptom profile as those who are coded, and the biggest difference is their lower quality of life. This makes sense if they aren’t getting help. I was surprised to hear that patients with IBS are off work 8.5 to 21 days per year. What I don’t know is if they are off owing to bowel symptoms or whether from the high burden of co-existing disease such as anxiety, depression or somatising syndromes such as fibromyalgia.
One thing that is obvious, people with IBS suffer. 7% will be admitted to hospital with severe abdominal pain. Patients with IBS are twice as likely to have a normal appendix removed than the population average. Whilst the cancers can mimic IBS in the early stages, patients with established IBS have the same cancer risk as the general population. What is trickier to unpick, is that IBS patients have a 9-16 times higher risk of getting IBD in their lifetime and this can turn up late in the illness.
Guidance on IBS care comes primarily from NICE and from the British Society of Gastroenterology.
Reviewing real world care
That got me thinking about how care is delivered in practice. I reviewed 78 patient journeys from initial diagnosis to the present time. So, what did I find? The first thing was the richness of the cases showing how this condition affects people’s lives. There was the patient in her 20s was autism and mild learning difficulties who couldn’t understand or control her symptoms and ended up in A+E on 4 occasions, admitted twice, had four meetings with gastroenterology and had a colonoscopy and CT scan. The frequency of care only dropped when a consultant letter suggested that Primary Care follow the BSG guidelines and suggested probiotics. In another case, a lady in her 50s had stopped working owing to uncontrolled symptoms but she had not had the full investigations, had never been referred and had not tried most of the evidenced treatments. Something was frequently going wrong in care and I wanted to understand why.
Difficulties in the real world compared to the guidelines
As a clinician, IBS care is really hard to deliver. This is because we can’t make an instant diagnosis if the patient hasn’t had symptoms for 6 months. When doing the initial exclusion investigations, the patients may not return for their results. Sometimes they will re-present to another clinician, sometimes they are feeling better and never return at all. Worst of all, they never seem to come just with IBS symptoms. The complexity of modern Primary Care means that these stories are woven into consultations about stress and job loss, bereavement and anxiety. It’s hardly surprising we can’t get everyone fixed. With multiple proposed mechanisms of symptoms, each case needs handling individually with tailored advice based on specific circumstances. The best treatment for someone with anxiety is not likely the same as for someone with a very poor diet.
Audit results
When reviewing a set of notes over time, one easy thing to do, is to review the tests they have ever had. 20% of people with coded IBS had never had a coeliac screen and 30% were missing a faecal calprotectin. Of those who met the criteria, Ca125 was only done 40% of the time. It’s easy to overlook when there is bloating in a female over 50, when there are so many other parts to the presentation. Of cases meeting the criteria for a FIT test, this was only done a quarter of the time. This suggests that first diagnoses appointments should try to do all the testing at once and that review appointments should be more willing to re-check calprotectin and still to be asking screening questions for cancer ongoing. Just because the risk of cancer is not increased from the normal population, it is still the same as the population. I think that patients and doctors are safer if we have documented an absence of rectal bleeding and an absence of weight loss when symptoms persist.
The case for low FODMAP diets and probiotics
In the audit sample, 25 cases were advised on low FODMAP diets. Whilst these can be incredibly useful in the right patients, only three of the sample were also referred to a dietitian. This leads to the risk of harms. Dietitian follow-up is essential to ensure that the end diet is balanced and that FODMAPS are re-introduced.
By contrast, probiotics which are mentioned in the lifestyle section of the BSG guidelines alongside diet and exercise were only mentioned twice in the notes – an underrepresentation for an effective treatment which does not have documented harms and which does not need a dietitian.
A notable case
There was a cancer in the group I studied. But not in whom you would think. This patient was in her late 30s, reported a change in bowel habit and had a normal FBC and no weight loss. She was referred routinely to gastroenterology owing to unsettling symptoms and a calprotectin that had dropped from over 600 to normal on repeat. Her colonoscopy was done ‘for completeness’ with no clinical suspicion at clinic.
Primary Care for IBS is amazing. We literally change lives. Given the emerging evidence for probiotics, these could be tried more often. However, if we want to do it better, it is all about consistency. This starts with all using the criteria for diagnosis and should be supported by IT which helps us do all the testing. In the last sad case, this includes FIT testing for any adults presenting with a change in bowel habit. Not all IBS is IBS.
