Professor Francesco De Lorenzo – Federico II University of Naples, Italy
A multimedia information service for cancer patients
Thank you very much for taking time to talk to ecancer.tv at ESMO. You’ve been very busy running a big patient programme and a good bit of it was about rehabilitation. Why did you choose that?
We think that more cancer patients are cured and more cancer patients are living with cancer so rehabilitation is a major point for a better quality of life. Rehabilitation now is important to allow cancer patients to go back to work and rehabilitation is very important to get back a normal social life. We were very grateful to ESMO because they accepted to discuss about rehabilitation because we feel that rehabilitation is not only physical rehabilitation, rehabilitation means social rehabilitation, psychological rehabilitation, nutritional rehabilitation. In Italy we succeeded in getting together the Medical Oncologist Society together with the Institute for Cancer Research to discuss how to ensure a good rehabilitation of people having this kind of new concept, not only physical rehabilitation but a complex rehabilitation.
Now on your website, which is visited by thousands of Italian cancer patients every week, you have a lot of people asking for advice on specific things to do with rehabilitation, don’t you?
Yes. We have a multimedia system to inform people and the website is one of the most efficient but we also have a helpline. For cancer patients information is the first maze and we have to be ready to offer them the best information, very easily written and very easily understood also by phone and so on.
The question that they ask most once they get out of the hospital is psychological and social rehabilitation – how to apply to get benefits, having the recognition of disability, and a lot are also asking about nutritional rehabilitation and support with where to go to get the best service in Italy. Besides this, they call and they like to get our people on the helpline to understand what their needs are for information and it’s very important to give targeted information to each one who is asking something.
We believe at ecancer that the videos are quite an important way of getting this and I know that your wise counsel will be very helpful to people. We’ve discussed an ecancer patient, haven’t we, in the past and we would be looking to set up videos like yourself and other patients who actually will go straight onto camera and see people. Obviously there’s a language issue and we’ll have people with different languages etc, but do you think this is a way to go?
I can tell you one thing, we published a paper in Annals of Oncology reporting on more than 300 patients all over Italy and we offered them the possibility of getting informed, in addition to what the medical oncologists say, also through information in booklets and a DVD. We gave them a DVD on chemotherapy and a DVD on radiotherapy. They preferred the DVD because having a DVD is not only the patients that read by themselves but they can get it home and then it’s informing most of the family, the family supporting the cancer patient, so I think that we should work with this. For cancer patients it’s very difficult to have their own DVD so if something can be done at a national level, at European level, that would be the best result for cancer patient organisations and we would be very glad to collaborate with you on this mission.
That’s really kind of you, thank you. I really appreciate that. Now we are also collaborating on an FP7 European Commission project called Eurocancer Comms. You have very kindly given us the backcloth on which to put a really quite unique randomised clinical trial for patients who come on to your helpline and press the button for nutritional support and we’re saying to them, “We’re interested in nutritional support too,” and the project says, “Would you like to take part in a study?” and the study is either you get nutritional support or you get nutritional support AND invited to a social chat room, a sort of Facebook sort of thing. This is innovative, isn’t it?
Yes. This is really true to you. One of the questions that they ask most is about nutrition, and we also have a booklet, but if we can interact as a social network then we can really understand what are the real needs of cancer patients for nutrition. We are very glad to join this project since we have 5,000 visitors per day. So then together we can really have a good picture of how things are going in Italy and perhaps that can help to do the same study also in other countries.
But you’re also interested in the same approach to clinical trials, aren’t you? This is your idea.
I think that if we can get the medical oncologists doing their clinical trials to also ask something about nutrition, from these studies we can get a lot of useful information to give the right answer to cancer patients.
Professor De Lorenzo, thank you so much for giving us five very precious minutes and well done on this one.
It’s a pleasure to collaborate with you.