Problems with survivorship care in Europe

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Published: 9 Sep 2017
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Prof Francesco De Lorenzo - University of Naples Federico II, Naples, Italy

Prof Francesco De Lorenzo presents in a press conference at the ESMO 2017 Congress about the problems with survivorship care in Europe. He goes on to discuss the need to implement the ESMO Clinical Practice Guidelines more effectively throughout Europe.

I’d like to thank, first of all, ESMO for collaborating with ECPC to do this piece of work that I think presents really a breakthrough in survivorship care. I am, first of all, as Fortunato said, a colon cancer patient so then my life was changed before cancer and after cancer. So I thought that I could help cancer patients having as a model my experience.

I started in Italy but then I thought that we could do more work at a European level. The European Cancer Patient Coalition has 400 members from all over Europe of common cancers and rare cancers. The organisation is run by patients and we are doing research, advocacy, a lot of policy and collaboration with the European Commission, European Parliament, capacity building and so on. The problem of the survivorship is one of the major parts of our mission. We were thinking to survivorship care since the beginning and we have been doing a lot of work because we feel that we have just a tremendous number of people that are just surviving. We feel that, for example, looking to this picture some of them can be cured. Some are just getting a lot of problems and they need rehabilitation to go to a normal life. So we felt that there are a lot of problems together that go from taking care of late effect and just prevention of second tumours to social problems and taking care of going back to work.

Then in addition to this we were very much impressed by the fact that now we can also try to cancel the barrier of having cancer considered as a kind of impossibility to go to a normal life. We know from the study done by the Italian registry of tumours that we can say that out of the 2.5 million people living in 2010 in Italy with a cancer diagnosis 700,000 were cured. So we don’t know pretty much anything about these cured people. We know that it’s increasing the number of cancer survivors that are getting inability or disability pensions. According to studies that we did in Italy, they are overcoming the cardiovascular people. So this is also a ticking bomb and is, from a social point of view, a very important thing.

So then we were working at European level and we were just having a major part in the Joint Action Cancer Control. We were working to have just a working package on the joint action. Work package 8 that, as you can see, has been working in collaboration within seventeen different European countries. We were raising a lot of questions and the first thing is that the European framework for high quality cancer survivor care and rehabilitation that could promote a true level.

Then tools, the European barometer personal rehabilitation and survivorship care plan because the survivorship care plan is the key problem. Then the work package was doing recommendations that now they are supposed to implement the national cancer plan. So then our problem was trying to put into the national cancer plan the problem of survivorship and of rehabilitation.

Then the most important thing of this guide that we did with ESMO was just trying to transfer into the ESMO guide for cancer patients all the recommendations that we were agreeing with the seventeen countries. We succeeded to do this because we had a memorandum of understanding with ESMO and now ECPC is collaborating for giving the knowledge that we have from our cancer patients about the updating of guidelines for survivorship care. Then we have been working with a very dedicated team from ESMO and we succeeded to have this booklet that is not only a booklet for patients but it’s a booklet also for general practitioners and also a kind of support for medical oncologists.

So returning to work is one of the most important things, going back to a normal life. Because still patients that are cured feel still that they are the miracle to be cured but they don’t care to go to a normal life. So they must know that true rehabilitation, rehabilitation that can be just horizontal, not only physical rehabilitation, psychological rehabilitation, nutritional rehabilitation, sexual rehabilitation, to go to a normal life.

Then the patient guide on survivorship contains that you can see here so I won’t spend too much time on this. It’s supporting coping with the new reality, who can help me. Then cancer rehabilitation, psychological support of a patient and their family. Then life after initial treatment, how can I get my normal life, your sexual life and fertility after cancer, returning to work, finding new hobbies and interests. Chapter three: preventive health – what lifestyle changes can I make to achieve optimal and emotional, maintain a healthy lifestyle, reducing the risk of cancer recurrence. Then very important is follow-up care, detection and management of treatment of tumour related symptoms, the late effects. Then comorbidities and management of comorbidity.

I want to end my talk telling you about the survivorship checklist, care plan and treatment summary. We have been doing also some productive experience in Italy because with medical oncologists in Italy we had, together with the general practitioner, a consensus conference. We have also a booklet that is saying what to do after care. But this survivor checklist is the really finding tool that can change completely the problem of the survivorship care plan.

I don’t want to go through this but this is the link between… First of all it’s a tool for empowering patients. So a patient that knows about all the things, also prevention, then he has in his hands something that the medical oncologists or the nurses should fill up. Then this is the passport to go to the general practitioner and get the general practitioner interested to follow things. So then this is really the big tool and I ask Fortunato to see if in the Community Committee ESMO could work to spread all over. Then, Fortunato, we were betting on this. We did the first step but now we have to translate this booklet and we have to do a lot more work together. Thanks a lot.