EONS 2012

Implementing symptom guidelines

Anita Margulies – EONS and the Swiss Oncology Nursing Society


One of the great things about cancer is that it’s getting treated better and better and you can get cures but a big area with cancer is that you have lots of symptoms. One of the arts of treating cancer is to manage those symptoms. You’ve been looking into guidelines, could you first of all tell me about the guidelines that you’ve created and then I’d like to then ask you how to get them implemented. So, first of all, what guidelines have you got for us?

The guidelines that we’re trying, and when I say we, this is the European Oncology Nursing Society in collaboration with the European Partnership for Action Against Cancer in collaboration with the Oncology Nursing Society in America. As you were saying, patients are being treated and symptoms are created either from the tumour or from the treatment and patients suffer from these symptoms. So what EONS is going to do, and we have committed ourselves, to implement five symptom guidelines within the EPAAC project. This is a huge European partnership project with ten different working groups. Within these working groups, one of the working groups deals with healthcare and in this healthcare package EONS has committed itself to bringing symptom guidelines on the European market.

Can you tell me, first of all, what kind of symptoms are we talking about here?

They are dyspnea, lymphoedema, pain, peripheral neuropathy and radiation skin reaction or radiation dermatitis, it depends where you’re using the terminology. We’ve chosen these five guidelines because four of them are non-existent on a European basis. There are clinics that have excellent guidelines in their single clinics but it’s not for all of European nurses or respective physicians. The idea of the EPAAC project is to take the inequalities from some of our countries in the European Union and equal it out with those that are more privileged, who have guidelines and we’re giving everybody the same guidelines.

What sorts of things have been going wrong in some of these symptom areas?

I wouldn’t say wrong, it’s sometimes that it’s not, we’ll put it in parentheses there, standard. So anyone who says, “I know something,” can say, “This is the way to do it.” It may not be right and so what we’re trying is not only to get the inequalities equalled out, it’s to, let’s say, aim for patient safety that the most evidence based guidelines are going to be presented for use.

Tell me about the guidelines then, what have you got?

The guidelines, if one takes an example, any of them, they’re set up in a way that the main guideline is on the basis of a traffic light. So that what is marked in the guideline with a green bar, this is the so-called ‘Go’, you may use these measures because they have been proven as effective.

So you’re a nurse…

Or a physician.

Or a physician, you’re faced with symptoms in your patient, you can refer to the guideline and you’ve got some guidance.

Exactly, and say, “Well, we’ve done this, we’ve done this, we’ve done this, oh, but we haven’t done this.”

Could you give me an example?

Let’s say, just for example, pain. If it says the right medication and the right dosage at the right time for that what one has, don’t save on pain medication because you’re not going to help the patient with his pain. They have been putting it off because of costs or because of availability or something, they may have to think, ‘We have to change our policy, we have to change our practice. We may have to change the pain medication schedule or we may have to change the pain medication itself to help this patient live better.’

To take another of your symptoms, dermatological reactions, for instance, how might you manage that?

With the radio-dermatitis or radio skin reaction it would be, for example, to give information at an early enough time. Give the correct information of what can one use for the radio-dermatitis that it doesn’t get worse over time when one could have done something not to prevent it necessarily but to reduce the toxicity of the treatment.

So have suspicions that it’s going to happen?

One knows that.

And be ready for it?

Exactly. And to give the patient the capability of caring for themselves, we call that self-management. If they know what to do, because most of these patients are outpatients, these days, there’s a tendency that there will be many more outpatients than inpatients. They have to live with their cancer, they have to live with their symptoms but they’re alive and we want to give them quality in their life by dealing with these symptoms and reducing the pain, reducing the dermatitis, reducing the dyspnea if possible, reducing the lymphoedema, reducing the peripheral neuropathy. So it’s aimed for quality of life but, with all of the wide spread of these guidelines, all of Europe has the same ones.

And so you can go down a table, you can find your symptom, run down it and see what is current guidelines about how best to cope with it?

Yes. They are updated up to 2011/2012.

It sounds absolutely crucial to get this sort of guideline implemented so how are you implementing this Europe-wide, because that’s quite difficult, isn’t it?

The first phase of this whole project, we’ve just finished off yesterday with a meeting of the so-called leads of these five symptoms where each symptom was reviewed by an expert nurse committee that we had call for applications and had five or six reviewers per symptom. The lead had collated all of the material that they got from these experts and reported that yesterday as to what has to be adapted from the American guidelines to Europe.

So you’re taking America as quite a model?

It is an excellent model because these are really well prepared, well documented guidelines.

How successful has it been so far in the United States?

Widespread, wherever you go, if any of the nurses you ask, “Do you know the PEP guidelines?” they know them.

So you have detected a deficiency, then, in Europe which you feel needs to be corrected?

Let’s say we have detected that it’s not widespread for everyone. There are some countries that are more privileged and have excellent guidelines, they might not use these guidelines but they can see if their guidelines are using the same information as the new guidelines.

And you’ve designed your traffic lights, you’ve got the scheme all sorted out, how is it being introduced?

Now that everything has been reviewed, our main implementation project will be this September in Brussels with a two-day implementation workshop where we’re inviting thirteen units, it will be with an application form, consisting of a staff nurse and a clinic manager. They will commit themselves to implement one of these guidelines in their clinic and then this will be evaluated after six months to see has change happened. They will come in Brussels, for example, a clinic from breast cancer patients does not have a lymphoedema guideline. One of these clinics will be coming with a manager who will commit themselves to allowing the nurses to do this from a hierarchy level plus the staff nurse who is going to implement this with her team. They’re going to say, “We have no guidelines for lymphoedema, we want to see what we have to do to prevent or at least catch it at an early stage.”

So this is going to happen, you’re committed to it, it’s a very good thing. Please leave me with one or two important points that you’d like people to remember.

Commitment from a clinic that they will do this and the evaluation to see if this guideline or these guidelines will implement change improvement and change the inequalities throughout Europe.

And do you foresee resistance, because doctors and nurses do think they can manage these things pretty well?

I only see resistance if the team will not work with the persons who have committed themselves by saying, “Oh no, we won’t do this, we’ve always done it differently and that was just fine.”

But in general do you see that people are going to be very accepting?

There’s a great acceptance up to now from people who have been within the project and now those who have listened to the different talks. They say, “This is something that’s missing.”

So it’s going to be welcomed?

We hope so.

Thank you very much.

You’re very welcome.