Symptom management and combating side effects
David Larkin – ACT Government Health Directorate, Australia
Can you tell us about your presentation?
It’s based on some research that we did in Canberra using the therapy-related symptom ‘Checklist’ and the symptom alleviation self-care methods tools for evaluating symptoms of cancer treatment in patients, so that’s a self-reporting tool and then it identifies the severity of those symptoms and what people do to alleviate the symptoms themselves. So not what they do while they’re being treated by nurses and doctors but rather looking at what sort of things they do at home to manage the symptoms.
Was the ‘Checklist’ something your centre developed?
No, no, it’s been developed early 2000s by a lady named Phoebe Williams who is presenting here at the conference on the ‘Checklist’. They’ve reported on the use of that in America, China, Philippines and Thailand, so we thought we’d have a look at the Australian context given that we’re a bit of a multinational, multicultural country but still, I guess, primarily Caucasian at the moment but that’s changing with immigration.
What self-care strategies have you seen from patients?
One of the interesting ones that came up quite a bit for a few of the different symptoms was just to accept it or put up with it. People found that by accepting it, accepting the symptom, that that helped. There’s just such a range of things. The biggest method or methods that people used was altering diet or lifestyle and that relates a lot to the taste changes and the nausea and the loss of appetite and that sort of thing that accompanies mostly chemotherapy but can accompany radiotherapy depending on the field treated. So people did a range of things like using eating yoghurt to eating only their favourite foods or going back to childhood favourite foods, which I guess we all probably would like to do, but when we’re faced with the horrible taste changes or the loss of appetite, just to get some nourishment into us, it’s one of the big things that people do. A lot of ice cream, a lot of people ate ice cream, milk. Surprisingly one person nominated that they ate spicy foods, we’d normally go for more bland foods but I thought that was interesting that they did that. There were things that come under the category of mind-body control so that’s things like meditation, prayer, doing crosswords and puzzles and that sort of thing, counselling or talking with people, that was big, particularly for the more psychosocial type issues that people had. Fatigue, actually, was our biggest symptom that people had and doing crosswords or puzzles, reading, that sort of thing, people said helped with the fatigue. Cancer-related fatigue is very multidimensional but part of it is a mind fatigue, people describe it like fog or in various ways but they found that by doing those sorts of things that required a bit of concentration it helped.
What are your plans for the information on patient management strategies?
We’re in the process of publishing but we plan to get the information out to nurses because, for one, it’s all well and good to know that these drugs help or this helps or that helps but if there’s a range of things that people do that we’re not aware of, it just gives us a greater armoury when educating patients on the sorts of things that can help, the sorts of things that patients can try.
How do you plan to distribute the information?
We haven’t looked at that yet, we’re going to hopefully publish in a journal but then we’ll look at other ways of disseminating the information and getting the message across to nurses and to patients.
Anything else you would like to share from your presentation?
It gives a bit of a snapshot of an Australian point of view which we got a couple of surprises out of the research being done in Australia. We found that things like herbal treatments and biologic treatments weren’t used very much but we had a much higher use of pharmacological treatments than has been previously reported, particularly in the Asian and American countries. So we thought that that was a bit of an interesting phenomenon that we in Australia tend to rely on the pharmacological side of things a lot more than other countries have. It would be nice to do a much bigger study using more centres from Australia because the region that we did the study in has an immigrant population that’s just over a third from Asia and then the rest, the top five, that is, is one third from Asian countries and then UK, Ireland, Europe and New Zealand. So we still have a large Caucasian immigration pattern there but other places in Australia will have different cultures in their population.
Have you been able to compare your findings to similar studies?
It has been published in populations in Thailand, China and the Philippines. I don’t recall that they had any other cultures in their demographics but we haven’t actually done a comparison of our results with theirs as yet. That would be interesting to look at but just a brief comparison that I did, not scientific by any means, but just from observation of their results and ours, we would have thought that there would have been a much higher use of herbal remedies in Asian countries but actually it was quite low, and that was a bit surprising to us. In our study it was quite low as well so we were similar there but they had a much higher use of mind-body control methods and we had a much higher use of pharmacological methods so it’s interesting, the slight variances between cultures.
Are the mind-body control methods provided by the centre or externally?
From as far as I can gather it’s external, so it’s things like massage or acupuncture, meditation, a lot of prayer, especially in the Asian countries, a lot of them are nominated as being Buddhist so there was a lot of prayer, and they said that was helpful which is good; something that helps with their cancer symptoms, it’s good.