The Multinational Association of Supportive Care in Cancer (MASCC)
Dr Stephen Grunberg – University of Vermont, Burlington, USA
Hello Dr Grunberg, you are the President of the Multinational Association of Supportive Care and we’re here at ESMO. Can you tell us what your association does?
The Multinational Association of Supportive Care in Cancer is interested in all of the issues that surround the actual anti-cytotoxic treatment of cancer. It’s really impossible to deliver good anti-cancer care without concentrating on symptom management and supportive care as well. In addition, for those patients who are beyond active treatment, palliative care and symptom management becomes important and for those patients who do well in their treatment, survivorship issues, which to a large point are supportive care and symptom management issues, become important as well. Our group has sixteen different study groups in many different areas: anti-emesis, nutrition, palliative care, education, psychosocial care, mucositis, bone health. So we have experts on all of these areas who get together once a year for our annual meeting but also work together during the year. We’re also a multinational association and we take that very, very seriously. Our 700 members come from over 60 countries and our annual meeting last year attracted over 1400 people to New York to discuss these issues. We have our meetings on a different continent each year to make it easier for our members to attend, so we were last year in the United States and this coming year, in 2013, we’ll be in Berlin.
I think it’s very important because cancer is becoming a chronic disease and people are living longer. So what are the main issues that you come up against?
The main thing we come up against is people are not considering supportive care to be an important part of the management of cancer. It is certainly important to kill the cancer cells but one can become so focussed on that that one forgets that there are many different issues that go along with this; that we are not only trying to improve duration of survival but also quality of life, both during treatment and after treatment. Whether you are vomiting or not during your treatment, for example, has been shown to double or halve, depending on whether you’re vomiting, your quality of life during that period. Whether you can have an appetite during your treatment; whether you get mucositis during your treatment, which then becomes, for example for head and neck cancer patients receiving radiation therapy, whether you’re going to be able to taste food or enjoy food even for years after your treatment. These all become very, very important issues. Whether your memory will ever return to what it’s going to be so that you can return to work if you do well and survive the treatment of your cancer and have your cancer cured. So just remembering that these issues are an important part of cancer care and that good supportive care makes good cancer care possible are the points that we try to emphasise.
Among our many other activities we have also established guidelines in many areas. As a matter of fact, our anti-emetic guidelines are also ESMO’s anti-emetic guidelines, so we’ve worked closely together on those. In some areas we have to start with entire new guidelines, for example, the NCI guidelines on skin toxicities were actually designed to describe total body rashes of the type that one traditionally would see with antibiotics or other treatments. Now we have a concentration on targeted therapy, such as the EGFR tyrosine kinase inhibitors; now the rash from these agents can be quite severe but it tends to be an acneiform rash that only includes the upper part of the body. Because traditional staging systems for skin toxicity emphasise the percentage of the body that was covered with rash, these rashes, no matter how severe they are, would never be considered severe on the older grading system which actually would limit care and our ability to describe it. Dr Lacouture and his group from our skin toxicity study group have designed an entire new set of gradings, a new grading system for skin toxicity that more appropriately addresses the toxicities we’re seeing with targeted therapy. So by doing the inside of supportive care, by looking at this as a supportive care question, we find that we can actually do a better job of describing and treating. One finds as one listens to presentations, for example, that it is often said when a treatment is given, we gave the phase II study of the treatment, we saw a large number of adverse events but most of them were grade 1 or 2 and easily manageable, and that’s all you ever hear about the symptom management. Now grade 1 diarrhoea is up to four episodes of watery diarrhoea a day and I will tell you right now that although this may be graded as grade 1, the patients who we see who were having three episodes of watery diarrhoea a day and can’t leave the house because of that would not tell you that this is a mild toxicity. So working on patient reported outcomes and appreciating the importance and appreciating that we must find ways to address these problems is also an emphasis of our organisation.
You have a website where patients can come and get advice?
Yes, our website is www.mascc.org and it gives advice for patients but also has quite a bit of very good information for physicians, for doctors, for nurses and for researchers. We have developed several tools, for example, the MASCC anti-emetic tool is a validated tool for summarising the experience with nausea and vomiting after chemotherapy. Very easily administered; it has been validated for four day recall so that one can give it to a patient to fill out at home a few days after their chemotherapy and get a much better idea of what the patient actually experienced. In terms of toxicity, another limitation is that we tend to only concentrate on what we can see, which is what happens in clinic or what’s still present when the patient returns to clinic three to four weeks later. What happens in between, we tend not to see, and again this has been well demonstrated in some studies that we’ve done, that even the most aware doctors and nurses will do an excellent job, for example, of telling you how much nausea and vomiting the patients had on the day of chemotherapy but will underestimate by 50% the amount of nausea and vomiting that their patients had in the week following chemotherapy. By using a simple tool of the type that MASCC has designed and is very happy to distribute, you can get a much better idea. Now this tool, which was originally designed as a paper tool, has now also been converted into an app, a cell phone app, and is in the process of being converted into a web-based tool so that no matter what the level of electronic sophistication of your practice, you would be able to use it effectively.
Thank you very much.