Prof Heather Payne – University College Hospital, London, UK
Ms Netty Kinsella – The Royal Marsden Hospital, London, UK
HP: Hello, and welcome to this ecancer education programme which is being held after the Prostate UK Roadshow. We’re here in London, my name is Heather Payne, I’m a clinical oncologist in London and I’m joined by my colleague, Netty Kinsella who is a consultant nurse specialist at the Marsden Hospital. Netty, we’ve been talking a lot this evening about quality of life and it’s relatively easy and established to measure quality of life in clinical trials. We have the FACT-P scoring system, the Brief Pain Inventory and we ask so many patients to fill in these forms and we can compare the results as they progress on different treatments and compare them between treatments. I don’t know about your clinics but I think it’s just too busy to be able to give very complicated forms to every patient. Sometimes if we ask for lots of data it’s very difficult to know how we’re going to deal with that.
NK: Yes, I think you’re right. There are so many of these forms around and actually narrowing down the ones that are going to be useful in a clinic and actually that the patients are going to have time to fill in. We have seventy-odd patients in a clinic and obviously there’s plenty of time to do that in a waiting room but some of these tools are actually really quite complicated and spending the time with people going through them is actually one of the most useful things you can do. You said yourself, seventy patients in a clinic, unless it’s inside a clinical trial where you’ve got research nurses and others that are looking at this information and actually looking back at this information, it’s quite difficult to keep track. Who has an IT system that will flash up that last time the patient had an anxiety and depression score of 4 but now it’s 9? There are simpler tools; in the UK, obviously, we’re used to using the Holistic Needs Assessment but there are some things that it probably doesn’t characterise well. It was built initially as a very chemo-centric review of a patient’s progress and I’m not entirely sure nowadays with the changes in treatment and the better or less invasive treatments that we have and side effects being lessened by the types of treatments we have on offer whether actually they’re as accurate or as useful as they used to be.
HP: Quality of life is paramount to men with advanced disease and it’s really hard to measure it and to predict what’s going to be important for any one individual, especially when you’re coming to choosing different treatments, for example with first line castration resistant prostate cancer. In my clinic we go through a little list and we think obviously we want to offer patients treatments that are going to increase overall survival or radiographic progression free survival but also to allow men to live and not just exist. So increasingly we’re asking patients about some of the important quality of life issues and asking them about things like depression and cognitive function and perhaps interference with sleep and appetite. What do you think the important quality of life issues are?
NK: I’m totally going to steal your idea that you talked about earlier which was basically let’s think about you as an individual patient – your top five things that your quality is all about – and actually measure those because that’s really simple. Some kind of visual analogue scale that suggests where they are on that scale that you can actually look at each time is brilliant. There are so many quality of life factors and it would be wrong for me to define what the important ones are. You’re quite right, it’s all about the patient, whether that’s fatigue, whether it’s pain, whether it’s more about other lifestyle things that they can do as a result of having a better quality of life. But the most important thing is that they define those and not us.
HP: Absolutely, because it’s very easy to predict what we think should be important but sometimes you’re actually quite surprised when people tell you the things that they would like to maintain in their lives. We are in a very fortunate place with advanced disease in that we now have a number of different medicines, both with chemotherapy and the newer hormonal agents that we can match the predicted side effects with the way that patients want to continue to maintain their lifestyle. So it’s a bright future.
NK: Absolutely. I have in the back of my mind a patient that I looked after about eight or nine years ago who was 91 and his main raison d’être was to be able to have a good intimate relationship with his wife who was about 15 years younger. I think it’s a really good reminder that actually you really cannot tell from looking at someone what’s important to them in terms of their quality of life. He wasn’t in the best of health, he wasn’t as mobile as he would like but actually that was his number one on his list of quality of life items. It was really important for us to be able to accommodate that in terms of his treatment plan. Personalised medicine.
HP: That’s the ultimate personalised medicine, isn’t it really, to maintain quality as well as quantity of life. I’m actually going to try this idea and go back to clinic and ask people for their five top quality of life issues and then start measuring them.
NK: Yes, absolutely. I’m with you.
HP: Well thank you so much for joining us this evening to think about quality of life which must remain the pivotal reason for treating our patients. Thank you very much.
