Noel Clarke discusses the importance of patient-centered prostate cancer care, emphasizing clear communication, shared decision-making, and tailoring information and treatment recommendations to each patient's needs, values, and level of understanding. He also highlights the need to consider individual factors - such as age, overall health, cultural background, and access to care - when applying clinical trial data to real-world treatment decisions.
Noel Clarke:
Well, I think it's fundamentally important, and any doctor or healthcare professional working in this field, and indeed any field of oncology, must include the patient right at the heart of their decision making. And within that, I think it's important to have a few really key points.
One is it's vital to listen to what the patient's saying, and that's not always easy in a patient who can't necessarily express themselves as well as some of the higher-educated people. And equally, at the other end of the scale, some of the highest-educated people disappear down the wrong track sometimes. They get a lot of information and don't necessarily compute it in a way which is logical or medical. So I think it's important to listen, I think it's important to give the patient time to say what they want to say, and I think it's important to keep the language at the level that the patient can understand.
I think, finally, I think it's important not to give the patient too much information at any one time. In my clinic, I always try to think, "Well, what's it like on the other side of that consulting room when you're given a diagnosis, often that you didn't really expect, that you've got a cancer, that it's a problematic cancer, that it is going to have an effect on your life, your family, your work, and so on?" And that's not easy to take in at once. So we will often give the patient a second or even a third consultation and we involve our specialist nursing team and give patients things to read when they go home. So I think all of those things need to be taken into consideration and it's vital not to overload a patient with too much stressful information, often that they can't understand, all at once.
While I think it's helpful, if a patient is in a position where they have a partner, to bring the partner along with them, and if they haven't got a partner, a close relative or a friend with whom they can discuss things, I think it's also helpful to read a little bit beforehand, but not too much. I think we've all experienced in medicine a patient who arrives with a sheath of documents downloaded from the internet, some of which are relevant, many of which are not, some of which have got false information. And I think that whilst for a relatively small proportion of patients, it's helpful, I think for a lot of patients, it's actually quite destructive because they can read all kinds of stuff which they don't understand and it needs to be explained to them. And again, that's important.
What else can we get for the patient or advise the patient? I think it's always helpful to try to focus on the positive and to see what can be done and to not have too great an expectation, particularly in certain situations where a doctor or a nurse or an associated health professional might be trying to tell a patient something important like how serious their disease is, that a treatment has a chance of working. I think it's important for the patient to try to balance, if they can, the pros and cons of treatment, because some of the treatments that are on offer are actually quite toxic, time-consuming, and might alter their quality of life. And what are they going to get out of it? That's very important, I think, that they need to think about that.
Yeah, and this is really critical because it's a very good point. The clinical trials that we have recruit from patients who are often younger and fitter than patients we will often see in the outpatient clinic. And so if you look at many of the studies, they have patients who have got, as we would assess it, performance status 0, 1, and, to a lesser extent, 2. We really aren't looking at patients who are in that performance status 3 category to any great extent.
I think the other thing to say is that many of the trials published in what is essentially the Western literature don't necessarily address issues of race. And so different cultures are not represented in clinical trials. So Afro-Caribbean types, East Asian types, Indian subcontinent types, and so on, are often not involved in clinical trials. And that is a clear difference, because not only do we have genetic differences within those populations, but we have cultural differences, which are really very important, and I think that that is something that we need to take into account of.
Now, this is exemplified by a study, and we've done two major studies, in the UK looking at the population. One was the access of Afro-Caribbean types to treatment. Now, this is a minority subgroup in the UK. I think you have a bigger black American, if I can use that phrase, population in the US, but nonetheless, their access to healthcare is very different and their approaches to accessing healthcare is very different.
The second study that we did looked at patients presenting with metastatic disease. We had a very large population studied throughout the whole of England and Wales. That's about probably 50,000 cases a year, roughly, of which 16% had metastatic disease at first presentation. Now, we have about 38% of those were 80 or over and about 16% of them were between 70 and 79. And when we looked at the social deprivation indices, we had all this information, a lot of them were, for instance, socially-deprived backgrounds, and with that comes poverty, comorbidity, and so on.
And so I think it's very important not to over-translate the findings from clinical studies to the population that you might see where you're practicing medicine, which may be, as is the case for me, a largely white Anglo-Saxon, socially-deprived, relatively poorly-educated population who present late with heart problems, strokes, obesity, and so on. So we have to tailor our approach in that particular group of patients to what the literature tells us from the studies, and that requires a bit of thought, actually.