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Moving towards a national prostate cancer registry

Unlike breast cancer, there is no national registry of patients with prostate cancer that is clinically meaningful and can help doctors to make better and more informed decisions for their patients.

A pilot project in Ireland aims to fill this gap, and for the last 18 months it has been taking up to 200 clinical data points from men with prostate cancer in Ireland, as well as receiving detailed feedback on treatment efficacy from the same men via patient-reported outcomes. This data gathering, if continued into the future, will help improve patient outcomes for men with prostate cancer across Ireland and throughout the world.

Dr David Galvin is a Consultant Urologist at the Mater Misericordiae University Hospital, Dublin, and St Vincent’s University Hospital, Dublin. He undertook Fellowship training in urological oncology at Memorial Sloan Kettering in New York, with a special interest in cancers of the urinary system. His consultant post was funded by the National Cancer Control Programme and he is Chair of the National Prostate Cancer Leads Network. He is also Head of Research at the Irish Society of Urology, Senior Lecturer at University College Dublin and Principal Investigator with Irish Prostate Cancer Outcomes Research (IPCOR), which is supported by men’s health advocacy movement Movember and the Irish Cancer Society.

One of the goals of Movember is to establish prostate cancer outcome registries in a number of countries around the world, said Dr Galvin.

IPCOR has been running for three years, with the collection of clinical data taking place over the past 12-to-18 months, said Dr Galvin. It has been a “hard grind” but the project is starting to take shape and clinically-useful information should begin emerging over the next few months.

The National Cancer Registry Ireland (NCRI) in Cork collects national data on cancer incidence, treatment and survival. However, the data that is routinely produced by the NCRI is not considered clinically meaningful in terms of providing clinicians with the means to make decisions based on how patients are doing. The NCRI collects information on behalf of IPCOR, said Dr Galvin, with IPCOR supporting NCRI to employ extra people to gather much more information than was previously the case, he said.

The information from IPCOR on the treatment of men with prostate cancer, as well as the feedback from men about their treatment, will “completely revolutionise” the way clinicians treat people with prostate cancer in Ireland, said Dr Galvin. There will be a huge amount of data collected, he said, as there are hundreds of data points that must be gathered on every patient diagnosed with prostate cancer in Ireland. The data will also lead to a significant amount of new research once it is all collected and verified, he said.

Reports

The patients with prostate cancer are requested to complete an outcome assessment every six-to-12 months during the course of their treatment, and an electronic portal has been set up to facilitate patients reporting their outcomes. Some patients may have had surgery, said Dr Galvin, and they will be asked to give feedback on their surgery and quality of life following the procedure. Others may have had radiation therapy and they will also be asked their views. Patient-reported data is being gathered on patients throughout their treatment, irrespective of what interventions they received.

At this stage, IPCOR has gathered a huge amount of patient-reported feedback and clinical data on patients diagnosed with prostate cancer. This information is being linked to their ongoing biological assessments, said Dr Galvin. This means that in the future, if the funding was made available, it would be possible to take blood, urine and tissue samples from all patients to assess how the patient is doing against what would be expected.

The clinical data, in this future scenario, would be in place to answer all kinds of important questions, such as how patients on certain treatments are doing, what treatments patients prefer, what treatments patients do worse with, and how well patients from particular hospitals or parts of the country are doing. This information could also lead to a reduction in funding for treatments that lead to poor outcomes for patients and an increase for treatments that lead to better outcomes, said Dr Galvin. “If the patient is not doing as well as you’d expect them to do, you’d be able to identify those patients that came from a certain area or a certain hospital and make sure they are benchmarked right across the country and bring everyone up to the same standard, or level.”

Global

The data gathered from IPCOR in Ireland will be put together with other data from all over the world, said Dr Galvin. This will enable clinicians in Ireland to determine whether their patients are doing as well as prostate cancer patients in the UK, Australia and the US, for example.

In Ireland, the information will be reported back to the hospitals where the patients were based, said Dr Galvin, and GPs will be informed regarding their patients. An annual report will be produced to allow the HSE, Irish Cancer Society and patient groups to see how Ireland is faring compared to other developed countries.

The IPCOR project has funding for its first five years. Dr Galvin hopes that the next phase will be that the HSE or Department of Health would take over the pilot project and fund it into the future. There is a lot depending on the success of the project, because if this approach to improving standards is shown to work, then a similar strategy could be adopted for breast, colon and various other cancers, he outlined.

It is too early to be sure about any patterns that might be emerging in the IPCOR data, said Dr Galvin, as there hasn’t been time to check the data that has been gathered so far. The checking process has begun, however, and the plan is to start analysing the data over the coming summer months.

Contact has also been made with the HSE Director of Quality Improvement Dr Philip Crowley to determine whether the Executive has an interest in taking on the IPCOR project and funding it over the long term. The project represents a major quality improvement exercise in how prostate cancer is addressed in Ireland, said Dr Galvin, and he believes it is something that the HSE should be funding.

Screening

Dr Galvin has another proposal with the HSE regarding introducing prostate cancer testing across the country. There is much evidence that if a man has a prostate-specific antigen (PSA) test around the age of 45 or 50 years and the PSA level is found to be very low, that his risk of getting prostate cancer is also low. The implication is that many men over 50 do not need to be tested regularly for prostate cancer if they had a low PSA result between the ages of 45 to 50.

However, the men who are found to be at high risk with elevated PSA between the ages of 45 and 50 should be tested more frequently, explained Dr Galvin.

The proposal that is being put to the National Screening Service is to identify those men who are at increased risk for prostate cancer. This could lead to substantial cost savings to the state. It also fits in well with current health structures, as it could link with the BreastCheck units that are already up and running.

The men would come in, have their blood tested, and if they are at low risk they would not be checked for perhaps five or 10 more years. The patients identified as being at high risk would, however, need to be checked approximately every two years. Then, if their PSA continued to rise they would be sent for an MRI scan, which could be done in one of the existing Rapid Access Clinics.

“There is a lot of evidence out there to suggest that that sort of a process could reduce advanced disease and mortality by up to 50 per cent,” said Dr Galvin. This approach, while eminently logical, is not being implemented in any country, but Ireland could lead the way.

“I was at the American meeting over the weekend in Boston and we met with colleagues from Memorial Sloan Kettering and other places in the States and they think that this would be an excellent project to run in Ireland,” said Dr Galvin. “They see it as a small country, with six or eight cancer centres. We could set this up rather easily and run it with potential benefits.”

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