Went to an interesting (but poorly attended, unfortunately) presentation in Aberdeen earlier in the week, about patient involvement in choice and design of treatment programmes. The two speakers were primarily concerned with treating urological cancers, but it was encouraging that they were clearly trying in their research to take more account of individual patients and their peculiarities(!).
One topic of discussion after the presentation was the usefulness of measures of probability in helping patients to decide what treatments to accept. As it’s a University town, several in the audience said that as well as a list of potential outcomes from a treatment (or lack of treatment) they would also like to know the probabilities of different outcomes. So if one outcome is very unlikely, while another is very likely, some of us would find that very useful in making decisions about treatment options. There is apparently another project about to begin in the University looking at precisely this, and the ways of interpreting probabilities to patients who are in most cases unlikely to be familiar with the concept.
I’ve been asked to join a focus group which is helping the researchers to design the study, and would be very keen to hear from folk on here as to whether they think this sort of information would be valuable in discussion with clinicians. (Who, one has to say, are often not that familiar with the ideas themselves!). Any ideas welcome, even if you think this is a silly idea!
Hi. After it was realised that I had aggressive relapsing HL, and that chemo was not going to see it off, 6 siblings tested for me, but none were a match (1 in 4 chance that they would be ) When I had a meeting about having an autologous transplant I was given 30% chance of survival at one year. It was terminal if I didn’t go ahead, so I chose to grab at a chance of survival. Ten years on I am still here, and have surprised all involved in my treatment.
I suppose that despite given probabilities I still went with my heart, and hoped that I was the 30%
Hi, thank you for joining this vitally important focus group. I think patients need every tool available to them when making a vitally, potentially life changing, important choice that they are often floundering in the dark to make. Treatment choices often come with short and long term side effects to be taken into account. We are also very unique, complex beings with individual hereditary and medical histories. This sounds like the ideal University project, lots of variables. Please let us know how your focus group goes, take care.
Thanks for your post and I also think this sounds like an interesting project. I’m in favour of this approach but one of the challenges is the communication aspect of this. Understanding and interpreting probability is something that comes naturally to some while for others it can be meaningless and may confuse them more. There are ways to do this so it is tailored to the particular audience and this needs to be considered as part of the wider project. Also it’s important to also remember that emotional response can be very different from an intellectual response. If you are told a treatment has a one in a million chance of success and that is the only option people, as already highlighted, will go for that one chance rather than thinking will this is really unlikely to work. Just some thoughts and I hope they’re useful.
Really interesting topic, as probabilities and balance of risk will mean different things to different people, and we all read and interpret statistics differently. It’s also important to know whether the general statistics apply to you, or if they may be less or more significant depending on your own health and circumstances which is what often isn’t explained I think. It’s definitely an area where there could be further work and development.
That is exactly what the researchers in Aberdeen seemed to want to investigate. They recognise that probabilities and relative risks are quite difficult concepts to understand (suspect that quite a lot of scientists aren’t THAT clear about them either!) so want to find whether they can be explained in an understandable fashion and, if they can, whether people who get this information find it helpful in considering treatments or lifestyle changes. Not sure what has happened about the focus group meetings, though, as nothing further has been said. So I’m now booked in for a similar exercise on more general aspects of health care for “the elderly”. Of course, it’s not specially relevant to me, being only 75!