Find out more at www.calprotectin.co.uk/ibdoc 5 One patient who phoned our helpline, because she was quite anxious and unwell, did a sample and brought it into clinic for testing. The result was actually negative so we were able to provide immediate reassurance that her symptoms were not due to the IBD and advise her on her other health issues. Previously we would have expected to receive at least one call a week until the results were back. In this respect I would say that IBDoc has definitely affected how we are working. This is something that we can monitor, capturing both the helpline and email enquiries. Now I have 97 patient emails and I send a message to say I have noted your result etc. and they will respond by email. So we are changing the traditional communication method. Previously people would be calling – this isn’t something we had anticipated. It is going to be hard to quantify but I will say it has definitely had an impact. Visibility of Results In the beginning we didn’t allow patients to see their results but now we are allowing patients to view the actual results and they seem to like that. For me the traffic light system is really useful to inform both the patient and the clinical team what to do: ■ Red - we know we have to act immediately ■ Amber - we send an email to say the calprotectin level is a little high but we aren’t worried. We can retest in a month and if it is still high then we can consider what to do ■ Green - that is great because the patient is reassured that their calprotectin is below the cut off value. The traffic light system gives us a clear signal and we normally have so much data to manage that infographics are becoming an increasingly important way to help us to manage things. Cut-Off Values Currently the cut-off is set at 100 and 300µg/g which is the default setting. However, nearly every patient who has had their treatment escalated to biologics or immunomodulators, had calprotectin levels above 400µg/g. So we may review the cut-off moving forward, especially as recent publications on treat to target strategies have used a cut off of 250µg/g to indicate remission. The IBDoc won’t change how we manage patients presenting with acute symptoms. They will still have a flexible sigmoidoscopy within 3 days even if a calprotectin result is available, because we really need to understand what is happening with these patients. What it might enable in the acute A&E setting is to prevent patients going down the surgical route. Because we can act quickly on the calprotectin result IBDoc gives us the ability to Treat to Target – we had a least one patient like this in the original pilot study. Compliance with testing can be a significant issue. For example in a clinic of 10 patients; 2 of them who were asked to do calprotectin didn’t, although this isn’t necessarily related to the method of testing. We may want a baseline test for patients that are well, but since they are not feeling ill they don’t want the trappings of disease. They want to forget that they have IBD so even with the IBDoc they may still not complete the test. There are also some patients who will never do these tests because they don’t want to know the result even if they are well. One of the messages we as nurses need to get across is that even if the test comes back negative we will never ignore patient’s symptoms. Sometimes the patients don’t understand what the calprotectin result is telling them i.e. that the symptoms are not caused by inflammation but some other gastric disturbance that needs managing differently. There will always be patients who don’t comply and maybe we should be targeting these people because if they take control then hopefully they will be more compliant in the future - but that is an ideal world. Treat to Target In the six months that we have been working with the IBDoc, one patient was saved from hospital admission. It looked like they were having an IBD flare but the symptoms were actually being driven by something else. With another patient whose calprotectin results were >1000µg/g we were able to put them on the right treatment (steroids) quickly enough to stop the progress of the disease. The patients who have seen the most benefit from the introduction of the IBDoc are obviously those on biologics because it enables us to monitor them more easily. There are also the patients who we are trying to help understand that their symptoms can be functional and that we will manage them in another way. The advice I would give to other clinics who are considering introducing the IBDoc is: ■ Ask the point of care manager to negotiate with the laboratory on your behalf ■ Build your case around patient care and improving outcomes ■ Demonstrate how it can potentially impact the hospital finances – it only takes one hospital admission to be prevented or one patient where you can de-escalate treatment and significant savings can be made. If we can get 50% of the patients on board I will see it as a success. If we can get our IT in place then it will really improve the benefit of the self-monitoring. I don’t see that we have any choice but to make these changes to ensure a sustainable NHS, because the number of IBD patients is only increasing. Until we find a cure for IBD we have to find better ways to manage the chronically ill that are well and keep them out of hospital, so that we can focus our resources on the chronically ill that aren’t well. Reference 1. Dorset Echo 23rd March 2018 Clinicians can control how the patient sees their result: Test Completed, Traffic Light or Quantitative µg/g Result
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