Prostate cancer charity wants better information for patientsBMJ 2005; 331 doi: https://doi.org/10.1136/bmj.331.7524.1043 (Published 03 November 2005) Cite this as: BMJ 2005;331:1043
About one in four men in the United Kingdom with prostate cancer are dissatisfied with their care, a survey of more than 1000 men with the disease shows.
The Prostate Cancer Charity's survey of 1143 men who had the disease diagnosed in the last three years showed that more than a third did not have access to a specialist nurse to discuss their diagnosis and 43% were not given any written information about the disease or its treatments and side effects. Nearly a quarter of men who said they were alone when their diagnosis was broken to them wished they had had someone with them.
The charity believes that men should be better informed about the disease, including treatment options.
The respondents said they found all types of information useful, but they ranked information on monitoring the disease, on warning signs when cancer gets worse, and on treatment choices as well as general information on prostate cancer as more important.
Many men had initially presented to their GP with some kind of urinary symptom, and many had undergone their first prostate specific antigen test at that time.
But 40% of the men had “not enough” or “no” information about the test when it was first carried out. Only 36% said their GP fully discussed the test and gave them written information about it. This was despite the NHS's introduction of the prostate cancer risk management programme in 2002, which aimed at ensuring that men concerned about the risk of prostate cancer get clear information on the test and on treatments for prostate cancer.
Twenty per cent of the men did not think it was clear which treatment choice was best for them, and 15% did not think they had made informed choices.
“This is not a good result,” said the charity, “but we do not have to await a body of evidence to change that situation.” It said, “Information and communication would go a long way to reduce this total.”
Some of the men also felt they had not been given a full explanation of the side effects of treatment. Nearly half (47%) of men with continence problems and 56% with difficulties with erection said they felt inadequately supported by health professionals.
“Not all side effects from treatment can be resolved, but it is important that health professionals ensure that all men are supported to live with them as best they can. This is an area of patient support that can clearly be improved,” the report says.
Several political leaders have supported the charity's campaign to improve information. “Prostate cancer is now the most common cancer diagnosed in men in the UK, and at least one man every hour dies from the disease—it is a priority for us to tackle,” said the prime minister, Tony Blair.
The Real Man's Prostate Cancer Journey: The First National Survey is available at http://www.prostate-cancer.org.uk/.