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Dr Richard Osborne discusses new NICE guidance on metastatic malignant disease of unknown primary origin

Cancer expert Dr Richard Osborne discusses the new NICE guideline on metastatic malignant disease of unknown primary origin, and the benefits it will bring to the tens of thousands of patients who are diagnosed with the disease every year in England and Wales.

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This podcast was added on 23 Jul 2010

Podcast transcript

Cancer expert Dr Richard Osborne discusses the new NICE guideline on metastatic malignant disease of unknown primary origin, and the benefits it will bring to the tens of thousands of patients who are diagnosed with the disease every year in England and Wales.

Hello, and welcome to this podcast from the National Institute for Health and Clinical Excellence. Joining me to discuss the guidance on metastatic malignant disease of unknown primary origin is Dr Richard Osborne, who was the lead clinician on the guidance development group.

Q1 Interviewer: So what actually is metastatic malignant disease of unknown primary origin?

Richard: Well, I think it’s important to start with some simple definitions because this is actually a spectrum from newly presenting malignancy of unknown origin right through to the patients with confirmed cancer of unknown primary. So one of the first things we have done is set down some detailed definitions.

Essentially, patients with MUO, or malignancy of undefined origin, is somebody who comes through the door with widespread cancer who hasn’t  had many tests and in whom it’s not clear where the tumour has originated from.

At the end of the spectrum, there are patients who have gone through exhaustive tests in whom the primary site is still not evident, and this is the classical CUP (cancer of unknown primary origin) patient that oncologists see. And that’s what we have called confirmed CUP.

The guideline deals with the entire spectrum. It’s perhaps worth thinking about malignancy of unknown origin is an absence of something; it’s an absence of a site-specific diagnosis. And one of the problems that that brings is that patients don’t fit into the standard existing system of cancer care which very much revolves around identified sites.

Q2 Interviewer: And how common is this disease?

Richard: Well this is difficult to establish, as of course, it is this spectrum and another problem is that it is very poorly coded in current recording systems.

The confirmed unknown primary cancer end of the spectrum, we estimate that there are as many patients dying from this disease as there are for breast cancer, and that would make it the third or fourth most common cause of cancer death.

But the earlier end of the spectrum, people who come through the door with an unidentified primary but widespread malignant disease, of course there are far more of those patients. So I think we could say that there are tens of thousands of patients who will be served by this guideline.

Q3 Interviewer: What level of care do these patients currently receive?

Richard:  I think it can best be described as ad hoc, fragmented, arbitrary and unstructured.  It’s very easy to activate management plans for patients with site-specific diagnosis, somebody who has obviously got breast cancer or bowel cancer. But in many hospitals it is hard to find someone who will take responsibility for unknown primary cancer patients. By devising a system of care for these patients, we hope to rectify that through this guideline.

Q4 Interviewer: So we now have this new piece of guidance. What are the main recommendations and how will this help to improve patient care?

Richard: The purpose really is to perform the right tests on the right patients at the right time, and have the right people looking after them. 

One of the fundamental parts of this is to establish what the guideline calls CUP teams. Now these are a slimmed down multi-disciplinary team not a huge entity which sits around the table once a week. But actually a small group of people who can act rapidly in real time to provide for the needs of these patients when they first attend the hospital with an undefined primary, and then at a later date when a fully confirmed unknown primary cancer diagnosis is established  these will be the specialists in the disease who will manage them.

So, one of the main recommendations would be the establishment of a CUP team, that is going to require three sorts of people. Expert oncologists who will be able to assess the patients promptly and give guidance about their investigation and subsequent treatment.

The second part is specialist nurses who will provide the sort of support that patients with site-specific diagnosis already get.

 In many cases, specialist palliative care input is required for patients with widespread malignancy like this. And so having a member of the specialist palliative care team involved in the CUP team is the third part of this system that we envisage.

As far as other recommendations from the NICE guideline go, probably one I’d like to highlight is the there is a gross lack of research in this area and it seems about time that the national Cancer Research Institute established a clinical studies subgroup for this entity.

Q5 Interviewer: What are the outcomes like for this set of patients and how will they be improved by the NICE guidance?

Richard: Ok, it’s important to realise that because CUP is a very heterogeneous condition, the outcome is very variable. Some patients obviously have very advanced untreatable disease. Here the priority is to avoid inappropriate investigation and treatment and to rapidly provide high-quality palliative care. Those patients, then, we hope to provide better services, better care for them but it won’t be directed at delivering treatments to try and prolong their life.

But at the other end of the spectrum, there do seem to be patients who have disease that responds well to treatment and they can have survival measured in years. The aim is to identify these patients and treat them appropriately so as not to miss the chance to provide substantial real benefit for this subgroup.

Q6 Interviewer: How can we ensure that this guidance is followed?

Richard: Well, I think we need to emphasis the efficiency benefits that come from rapid assessment and decision making. I think that is a common sense approach.

What we should be trying to do is mandate a standard of care for unknown primary care patients so that they receive a level of care enjoyed by those with site-specific diagnosis. There has been a great deal of success in driving up the standards of care among malignancies like breast and bowel cancer through the established of cancer measures and the peer review process.

So it is anticipated that some specific cancer measures will be devised for the unknown primary care guideline and those would be peer reviewed and hence institutions would be held to account.

What I think we can do as well is use the opportunity of acute oncology development, which many people will be aware of, to build teams of oncologists and specialist nurses who are interested in the whole spectrum of acute work both from the point of view of dealing with acutely ill patients coming into hospital but specifically the efficient management of patients who presented for the first time with malignancy of unknown primary origin which is one of the driving things behind our guideline.

Interviewer: Dr Richard Osborne, thank you very much for your time.

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Disclaimer

This resource should be used alongside the published guidance. The information does not supersede or replace the guidance itself.

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Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.