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Perspectives from Australia: applying evidence-based UC management tools to clinical practice

Jane Andrews (Australia)

Transcript

Perspectives from Australia

Perspectives from Australia

Evidence-based UC management tools

Jane Andrews, Royal Adelaide Hospital & University of Adelaide, Australia

Thursday, 17 March 2016

 

I am going to talk to you about some perspectives from Australia and luckily I landed a couple of days ago so I am not sound asleep, and many of the people who helped with this work are in the room, so that is really nice as well.  

Disclosures

Here are my disclosures.  

A different perspective

I think it is great to have all that guidance for the doctors and particularly when you are dealing with a mobile patient population, who move across borders and move even between continents.  I think it is even better to have some guidance for the patients – 

A different perspective

– and that is because they don’t go to medical school and they do have to manage their own IBD every day.  

Why not specialist tools? 

Why didn’t we set out in our initiative to build specialist management tools?  

We already have a lot of specialist management tools and ECCO has actually been fantastic in that area, there are very detailed guides for clinicians, such as us here in the audience, but IBD is a life-long disease, there is a very large and increasing international prevalence, we need to have sustainable ways of funding care and there is a lot that can be done before you see a specialist with your IBD, there is even a lot that can be done in many parts of the world without seeing a specialist and many patients realistically are going to see other doctors, they are not all going to have the luxury of seeing Bill Sandborn or Janneke or myself or someone else in the room. 

Why not specialist tools? 

And so we thought we should look at general practitioners, so in our country, in the UK and in many other countries there are primary healthcare doctors and there are lots of them and they may well be and often are the first point of call for a patient, so we looked at the GP knowledge of IBD in Australia as a representative country and we thought they may be able to provide more of the IBD care. 

Why not specialist tools? 

But what we found was that GPs didn’t have a lot of IBD patients, because of the epidemiology of there being a large number of patients spread very widely, each GP had a few, and the GPs had a very variable knowledge and a very variable approach to IBD care, and one thing that was very interesting that we found was that their confidence in dealing with IBD was actually not correlated with their knowledge and that was a little bit concerning.  

Why not specialist tools? 

We thought then that we, as specialists, don’t have such great need for more tools and that maybe it was unrealistic to try and upskill GPs for the few patients that they had and that we should, perhaps, look at giving tools more directly out to patients.  

We started with UC – “easier”

We started with ulcerative colitis, because we thought that was a bit easier, symptoms correlate a lot better with activity in UC, they are not perfect, but it is a lot more consistent and many people with ulcerative colitis don’t have severe disease, most of the patients are not admitted to the hospital very often and a lot of them could have better care away from specialists and they could avoid more active disease with simple advice more often. 

We started with UC – “easier”

So how could we do this? 

1st step - Literature

The first step was that we went to the literature and we actually looked are there any tools that are not for specialists, so either for patients or for primary care doctors or general physicians, to help manage UC? 

1st step - Literature

So were there action plans?  Is there sufficient evidence to make a plan?  If we did make plans, would they be acceptable to patients and would they also be endorsed by doctors? 

Non-Specialist UC management tools?

So we sent off Alice Bennett, who is not here, to do a bit of a review of the literature and Pia Munkholm, who is very interested in this area as well, assisted us and we looked to see whether there were non-specialist tools?

Non-Specialist UC management tools?

And the short answer was “No”.  

Non-Specialist UC management tools?

So that was a little bit disappointing.  Alice did find a little bit more information, but what you can see was that there were only four non-specialist tools in the literature, the first one was published back in 1999 and then there was nothing published until more recently and they are published in three different languages.  

Comparison search of educational tools and guidelines for other chronic diseases

This is what you find if you look at asthma, diabetes and heart failure. 

Comparison search of educational tools and guidelines for other chronic diseases

Using the same search parameters, and so where is all the data and where are all the tools? 

Non-Specialist UC management tools?

So she looked in a little bit more detail to see whether there were actually action plans for patients and what she found was that asthma is doing really well and IBD affects a similar group of people, young, mobile, otherwise well people, who really should be empowered to have a good action plan.  

Non-Specialist UC management tools?

We also know and, again, this is thanks to Pia Munkholm, this is from her thesis, that there are a lot of patients with UC who have only mild or moderate disease, so they are ideal for ambulatory care and for patient support. 

Non-Specialist UC management tools?

We also know that there are lots of really good things that general practitioners or primary healthcare doctors can help support the patients with, so there are a lot of reasons we should give back, out into the community, to the patients and the non-specialist doctors.  

Non-Specialist UC management tools

Then, myself and a number of colleagues were approached by Shire, coincidentally, and they wanted to put on a meeting, so there was an opportunity, there was another educational meeting, another steering committee.  

Non-Specialist UC management tools

The thing that was different was that there was a free agenda and there was a desire on behalf of the company that we produce some post-meeting deliverables, and because a number of us were actually quite tired of seeing things present very late, which could have been avoided, we said ‘Have we got an idea for you.’

The Process.....

So then we went on and we had a stakeholder meeting, but instead of just getting people together who are involved in this area, including the general practitioners, the patients, the patient support group, the psychologists, the dieticians, it was really a broad ranging group.  We gave people pre-work and pre-reading and some of them actually did it, which was lovely, we sent them out guidelines and then we got people together and we had a bit of a gabfest over a weekend, and it was really interesting to get so many people into the room with different viewpoints, it was a very original meeting. 

The Result

The result is that we actually have developed some deliverables and these you can find in the literature, and they are also now embedded into general practice software in Australia, so our GPs are actually able to now access these tools, which is fantastic.  

The Tools

So we developed three tools and this is by consensus, from all the stakeholders, one was a document to help the GPs have some better evidence-based guidance around ulcerative colitis, because we thought it was no good having a well-informed patient going along to a GP who then went ‘Oh, what are you talking about,’ because we didn’t want to set up a dynamic that was going to be adversarial.  

We then also became aware that it was really important to give the doctors a little bit more foundation and confidence in helping to distinguish between IBD symptoms and IBS symptoms, because this is always a point where our patients get given more steroids, more steroids and perhaps what they needed was something else. 

Then, we also completed this suite of tools with the patient guide. 

GP UC Management Guide

The GP guide looks at telling the GPs about disease severity, disease extent, simple investigations they can use and then some simple management advice.  

GP UC Management Guide

We also, sort of, used the traffic light system, we borrowed shamelessly and we put in green this is the things that you look at for maintenance, in orange when you are having increasing symptoms these are the considerations and the red flags, and we also used evidence-based links to other resources.  

Differentiating between IBS and IBD

We then have this one pager that looks at the differential between IBD and IBS and I am sure that your local Shire representatives can get you electronic copies of this, if you are interested.  

Patient Guide

Then, we produced the patient guide, now this doesn’t project too well.

Patient Guide

But what I wanted to really just show you is on the first page it allows patients to have a look at their extent of disease – 

Patient Guide

– and to document that and to have a lot of relevant information if they move that they can present that to the new doctor and all the relevant stuff is there.  

Patient Guide

On the backside – 

Patient Guide

– we put together a device which would help them just monitor their symptoms and see visually whether they are going well, whether they should be augmenting their therapy or whether they should be presenting themselves to the emergency department. 

Patient Guide

Then, to go along with that, we provided medications in green for the usual maintenance and in red for when you go into the orange zone and you need to augment your therapy, this is what you do. 

Patient Guide

We would really like to emphasise with this to any doctors who are thinking about ‘Is this safe?  Is this a concern?’ I would see it as an opportunity, not a threat, you are not losing control, what you are gaining is the opportunity to enable your patients and their primary care doctors to do a much better job, so that when you see your patients you are seeing them well more often.  Thank you.  [Applause]

 

[Ends]

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

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