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The IBD–ECCO toolkit: a new resource for the management of patients with UC

C. Janneke van der Woude (the Netherlands)


The IBD-ECCO toolkit*: a new resource for the medicine management of IBD patients

The IBD-ECCO toolkit*: a new resource for the medicine management of IBD patients

C. Janneke van der Woude, Erasmus MC, Rotterdam, the Netherlands

Reducing inequalities in quality of IBD care

European Harmonization of IBD care: The ECCO

Thursday, 17 March 2016


I am very happy that I am able to stand on this podium before you, because it took a little while to really develop the ECCO toolkit, but I think in the end we succeeded and I think it is a wonderful tool for using in clinical practice. 

Disclosures CJ van der Woude

These are my disclosures.  

A patient’s journey

For me, it started actually with the patient’s journey.  

This was a patient that was referred to me from Finland, he wanted to study in Rotterdam, economics, and he was referred to me by a colleague from Finland, and it was a patient that was on azathioprine for two years and he was referred to me in 2014 and already using his drugs for two years and he was still in remission.  

From Helsinki to Rotterdam 

His last appointment in Finland, Helsinki, was in July 2014 and because I thought he would really love to sightsee in Rotterdam I wasn’t too quick with giving him an appointment at our outpatient clinic, so I made for him and scheduled for him an appointment in October 2014 and that was a couple of months after he had moved to Rotterdam. 

Mail received by a colleague

I thought everything was fine and I was very pleased with myself that I had already arranged everything, but then I got a mail from my colleague in Finland and this is translated, because I cannot read Finnish, but that patient actually sent a mail to his doctor over there and in that mail this patient was really complaining about me and he literally said that I was “not professional” because I “did not draw any blood” and this was “despite the fact that this has been done [already] every 2 months” after initiating “azathioprine” in this patient.

In our hospital really we have a different follow-up, different monitoring of our patients and we do it every six months when a patient is stable or in remission after one year. 

ECCO guidelines: thiopurines

So, because I felt bad, I went back to really the ECCO Guidelines, which are really important for me, but I couldn’t find any guidance on how to monitor my patients, 

ECCO guidelines: thiopurines

So there is really no guidance for relapse and there were several other problems, so how to start up, when to start up.

Toolkits Taskforce

So that is why I was very pleased that I was asked to participate in the Toolkits Taskforce, it is really an initiative from ECCO and this was really established to really dive deeper into the uncertainties about monitoring our patients and why would we really want to monitor our patients.  Now, in the end we would really like to reduce side effects and also avoid any harm from the drugs that can be done to our patients. 

Additional Reviewers

Of course, we were not the only ones that were involved in this process, there were a lot of other additional reviewers involved in the whole drafting process – 

ECCO Toolkits Task Force

– and in the end we thought that there were a couple of problems with regards to the use of drugs because, of course, our IBD patients really depend on drugs and it is really for them very helpful to maintain their health.  We also know that it is really the most important intervention that is done in our IBD patients, starting up drugs and maintaining patients on drugs, and really I think we should also then take care to ensure that there is a good quality of use, so avoid any miss or an incorrect use of drugs and where we do this I think we could improve patient outcomes by giving the right drug to the right patient in the right dose and, in the end, probably this will lead actually to less safety issues in a patient, because we do the monitoring quite well. 

Making the most of medicines

You can see there is a whole process within the ECCO where we think that we have to make the most of the medicines we have right now and we know new drugs are coming out, but still there are a lot of drugs that we can optimise and there are several aspects about optimising our drugs.  

First of all, of course, we have to talk to the patients and we have to make sure that patients really adhere to the drugs that are being prescribed.  

Next to that, we have to use evidence-based guidelines and I think we do a lot within the ECCO to provide you with these guidelines, but I think it is also important to follow up these guidelines.  

With regard to patient safety, we have to reduce the adverse reactions and I think it is a responsibility of us all, so not only the doctors themselves, but also as an ECCO organisation this is a real responsibility.  

Patient safety: first objective for the Toolkit Taskforce

We thought, really the taskforce, that we first should really look at patient safety and avoid the harm from medicine and also ensure the safe and secure use of IBD drugs, and we tried to fill in the gap between the ECCO Guidelines, where we don’t have the monitoring, and also clinical practice, where everyone is having his own protocol but maybe not ensuring the quality as a whole in all countries, and also I think we have to make our prescribers really well informed.  

Toolkit Taskforce approach

So what we did is we identified the drugs from the guidelines we have right now, we introduced red flags when not to prescribe drugs, we also tried to recommend the dosing, what to monitor and when to monitor, and from that we made a draft document.  

Voting process

And, over here, you may acknowledge that it has been a long process and we just finished it and finalised it, but I think because we did such a really in depth round and also to all national representatives I think we have a fairly [good] agreement at the moment for this toolkit. 

National Representatives of the 2nd Voting Round

Here are all the national representatives –

National Representatives of the 2nd Voting Round (ctd.)

– that really also helped us with the drafting of this document.  

ECCO’16 Bag Insert

Probably you already saw that it is inserted in your bag and if you go to the website you can really already download all the ECCO toolkits, and we kindly ask you to also provide an email address.  

Use of toolkits in practice

I have to make some disclosures, because it is a checklist for daily use, but we acknowledge that practice may vary throughout countries still and therefore we use ranges instead of fixed values and then still we know that there are some changes between countries, but at least we know when to monitor the patients, and because it is still work in progress these, of course, are open to amendment, so if you have any questions please ask us, but also we will follow up, because that is why we need your email address, on how you use it in clinical practice and whether you have recommendations for increasing the value of this toolkit.  

5-ASA in UC example

So I give you two examples, one is just for 5-ASA, so we tried to make it as easy as possible to use, so we tried to make it that you can see it in probably one H4  and over here you see what we tried to do we looked at it, some of the levels, like blood count, liver enzymes, creatinine, before treatment; we recommend dosing, in this case we recommend induction dosing and also maintenance dosing of 5-ASA; then we recommend some like follow-up measurements that should be done in patients using 5-ASA and we also included some red flag interaction, so sometimes it really gives you a flare of the colitis and some patients will experience headaches or nausea and also some rare red flags, like pancreatitis and hepatitis, can be seen in patients using 5-ASA.  

Then, we included several comments and that is also because of the process, because there were a lot of experts in the room and everyone had their own comments, so we tried to also summarise the discussions that went on when really creating this 5-ASA toolkit and coming back to my patient – 

Azathioprine in IBD example

– and then you see already that there is something different than what I do in practice, because also here are some recommendations made before treatment and that was already done, of course, by my colleague in Finland, most of really the before-treatment elapse, the dosing was according to what was standing over here, but what was really different and what is so different now in the toolkits – and there you see some experts in the room having their own opinions, my opinion is not in here – so this is really that the elapse should be measured every two to three months, but I am still not convinced, so I am sorry for that, but that is how you are going to use it in practice, so these are really the remarks we would like to have from you, whether it is doable and whether it is really practical. 


So to summarise, there are really variable standards in and delivery of care and monitoring of drugs across Europe that have been published and because we want to work to the ideal scenario, where we have all patients that can access really high quality care, we established the ECCO toolkits and we really like to optimise drug use to avoid medication associated with safety aspects and also to bridge the gap between the ECCO Guidelines and clinical practice.  

Already, I stated that this is a working version and we can still amend it, so please feel free to just remark and talk to us.  Thank you so much.  [Applause]



A Shire organized and sponsored symposium. The programme is not affiliated with ECCO. 

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