Investigation Highlights Inadequate Treatment Pathways for Microscopic Colitis
‘Many of us working with IBD have long been aware of the current disconnect between referrals, diagnosis, and treatment within MC’ says Ms Avery. ‘It appears to occur right across the service, from GP to specialist units. There is no clear pathway to diagnosis as there is for Crohn’s and UC, the faecal calprotectin test is unhelpful and there are no guidelines for the support and management of the disease. From a clinical, nursing and patient perspective this is a troubling situation.
‘A group of nursing colleagues got together and decided that we would try to establish exactly how this disconnect was reflected in the treatment of MC patients, with the aim of beginning to build some evidence to allow us to start a conversation and, hopefully the process, of change.’
The results of the investigation found a wildly varying range of diagnosis rates and referral patterns within each hospital and, perhaps more predictably, between hospitals. The longest wait for diagnosis at both hospitals was from a routine gastroenterology GP referral, with patients at SDGH waiting up to 18 weeks to be seen. Not surprisingly perhaps, the investigators found that the two week wait pathway was the most effective at achieving rapid diagnosis. At SDGH this system was responsible for 18 patients out of 47 in that cohort receiving a diagnosis within 4 weeks.
‘One of the biggest surprises for me was the sheer number of patients that were being picked up over the period of the investigation,’ says Ms Campbell. ’76 patients were diagnosed with MC, 44 via the two week wait system and 32 via the fast track road access to my clinic.
‘However, to a certain extent this reflects my own observations from fifteen years as a IBD nurse specialist – that MC is a condition that is there if you look for it properly. Unfortunately, many women are still being misdiagnosed at primary care level as having IBS, instead of being referred on correctly for a possible diagnosis of MC.’
The abstract also points out that even after diagnosis, follow up care also is wildly variable with only 4 patients at SDGH being placed on the nurse led IBD service, whilst 16 were discharged back to GP, and 18 seen in gastroenterology clinics with treatments ranging from nothing, to Loperamide to Budesonide.
‘This investigation shows that we need to do better by our patients,’ says Ms Avery. ‘MC is a really distressing disease to live with, the more so if it is not diagnosed as is often the case. Patients are often bounced between the GP, and clinics where, unless their colon is biopsied the condition goes undiagnosed diagnosed and they are sent back to their GP.
‘We have patients who have not left their house for two years yet have been continually told by their GP that they have functional diarrhoea or worse still, psychological issues. ‘This situation is all the more frustrating because usually MC is not hard to treat. Lifestyle changes such as giving up smoking, reducing or stopping certain medications (PPIs , NSAIDs, SSRIs) can make a huge difference, as can a course of the steroid budesonide.’
‘Raising awareness of microscopic colitis within primary care is key to resolving this situation,’ comments Ms Campbell. ‘For example, since I attended GP master classes for GPs in our area, diagnosis rates have been rising steadily, as suspected cases are now referred for the correct diagnostic process. Once the patient is diagnosed and treated correctly, their lives can be transformed.’
Both Ms Avery and Ms Campbell hope that this investigation, which is currently being written up into a paper for journal publication, will encourage changes in how Microscopic Colitis is considered, in both primary and secondary care and at a regulatory level.
‘This investigation confirms the urgent need for more guidance throughout the system both on how to diagnose and treatment patients with MC and also on how to support them after diagnosis,’ says Ms Avery.