Data from 1,300 Irish men collected as country’s first quality-of-life study of prostate cancer patients gets underway
From treatment and care to physical and mental wellbeing and quality of life, newly-diagnosed prostate cancer patients are sharing their experiences with the disease as part of the development of Ireland’s first national prostate cancer registry.
Spearheaded by IPCOR – Irish Prostate Cancer Outcomes Research – and in partnership with National Cancer Registry Ireland, the Clinical Research Facility in Galway and Molecular Medicine Ireland, the clinical information of more than 1,300 men has been collected for the prostate cancer registry.
The IPCOR study plans to engage with these 1,300 men and ask them to participate to provide information on their quality of life before and throughout their treatments.
The data collected in this study will better inform future care delivery, knowledge of the disease and best use of health care innovations and resources.
Currently there are around 28,000 men in Ireland who are living with or have survived prostate cancer. But while research has led to huge strides in survival rates – from 35% to more than 90% over the past 40 years – much less focus has been placed on the impact which treatment and care can potentially have on prostate cancer patients.
Depending on the treatment undergone, side-effects for some men may include urinary problems and erectile dysfunction. The IPCOR quality-of-life study will evaluate men’s experiences from their diagnosis and right throughout their treatment, so that clinicians are more informed about these side-effects and, in the future, are able to better advise their patients on how their prescribed treatment may impact their lives.
Information on the study is highlighted in IPCOR’s second annual report, launched today.
IPCOR is a five-year prostate cancer research centre funded by the Irish Cancer Society and the Movember Foundation. Both organisations will invest a total of €1.75 million into IPCOR over its lifetime, all thanks to donations from the public.
For the past nine years the Irish Cancer Society has partnered with the Movember Foundation Ireland in investing in Irish prostate cancer research projects such as IPCOR. The Movember community across Ireland is encouraged to again raise vital life-saving funds that will mean we can continue to invest in prostate cancer research, as well as advocacy and services.
IPCOR plans to continue enrolling Irish men onto their study, and have set up an electronic tool which newly diagnosed prostate cancer patients can access to upload their details and outline their cancer journeys, available on ipcor.ie.
Commenting on these developments, Mr David Galvin, IPCOR Principal Investigator and Consultant Urologist at St Vincent’s University and Mater Misericordiae Hospitals, said:
“In Ireland, we know very little about how the treatments for prostate cancer affect our patients. There is a real deficit of data nationally. IPCOR will bring together the clinical information with the information that patients supply to us. This will allow us to assess not only which treatments work but which treatments patients prefer.
“IPCOR will also analyse how a patient’s address affects their access to high quality care. We want to ensure that all patients regardless of income or location have equal access to high quality care, and IPCOR will collect the data to demonstrate this nationally.
“By focussing on the patients’ quality of life, I am proud to say that IPCOR is leading the way in research that has the potential to improve the experiences and outcomes for prostate cancer patients.”
Prostate cancer is the most common cancer among men in Ireland with around 3,400 new cases of the disease identified each year. This makes up almost one third of all cancers diagnosed in men here.
Through its work on a national prostate cancer registry, IPCOR will provide a much-needed platform from which healthcare professionals can best care for their patients during their treatment and provide continual support as they come through this disease.
Through their work with IT company PatientMPower, IPCOR is also working on a smartphone app that will act as a patient portal, allowing men to log-in whenever they wish to update their care experiences.
Once the study’s information has been collected and analysed, IPCOR will seek to share this data with their global partners in Australia, USA, the UK and further afield to benchmark their results and learn from the centres that yield the best outcomes.
Commenting on IPCOR’s work, Head of Research at the Irish Cancer Society, Dr Robert O’Connor, said:
“The innovative research carried out by IPCOR is the future of cancer research – looking at how best to treat the patient, and not just the disease. Funds raised through Movember make it possible for the Irish Cancer Society and the Movember Foundation Ireland to support vital, patient-focussed research like iPROSPECT and IPCOR so that we can continue the fight against prostate cancer in Ireland.”
According to Neil Rooney, Movember Irish Country Manager:
"Improving the physical and mental health of Irish men diagnosed and living with prostate cancer is a critical priority for Movember. It’s an essential piece of research that will make a real difference to the lives of those affected by prostate cancer and we're proud that the Irish Movember community is able to help facilitate it. The research is testament to the communities’ ongoing support and fundraising which is driving innovative research that will have an everlasting impact on men's health in Ireland.”
Programmes such as IPCOR rely on funds raised through initiatives such as Movember. To make a donation or see how you can help change the face of men’s health visit www.movember.com.
To speak to a cancer nurse on any aspect of cancer contact our Cancer Nurseline on Freephone 1800 200 700, email cancernurseline@irishcancer.ie or drop into one of our 13 Daffodil Centre in hospitals nationwide. For information on Daffodil Centre locations and opening times email daffodilcentreinfo@irishcancer.ie.
