Thousands of men with prostate cancer may be missing out on the right treatments for them because they are not being given the support they need to make treatment decisions, or enough information on how various treatments may impact their quality of life . Six in 10 men with the condition are not making treatment decisions together with their doctor, as recommended by NICE guidelines.
Previous studies show that around half the population do not understand the health information they have been given and in the case of prostate cancer, several different kinds of treatment are available which can make treatment choices overwhelming without the right level of support from healthcare professionals.
But a PCR survey of 766 men with the disease found 62 per cent said their treatment decision was not made with their doctor and almost half (47%) did not feel that they had been given enough support by their healthcare team.
To address the issue head on, PCR have launched www.theinfopool.co.uk, an interactive website partly funded by the National Lottery Community Fund, to provide clear and simple information on testing, treatment, trials, along with real life patient videos.
Around 12,000 men a year die from prostate cancer and it affects some communities more than others – one in four black men will be diagnosed with it during their lifetime compared to one in eight white men, for instance.
David James, Director of Patient Projects, Prostate Cancer Research said: “Due to increased awareness, more men with prostate cancer are getting diagnosed than ever before. Unfortunately, some men don’t understand the health information they are given. Our research has shown that the doctor-patient communication is not always ideal, and that means these men may miss out on the treatments that are right for them and then feel regretful”.
He continued: “The infopool is full of easy-to-understand information and includes filterable stories from people who look and sound like those watching and reading them. This is a revolutionary way of educating and empowering the hardly reached groups: Black men and half the population with low health literacy (who find it hard to use the health information they receive). By further educating and empowering all men living with prostate cancer, we hope the infopool will reduce the likelihood of ‘treatment regret’ and thereby improve patient quality of life across the UK”.
Among those who have been diagnosed with the disease is Elton John and, coincidentally, a professional Elton lookalike, David Bills, who had surgery last year.
He said: “There is nothing like this out there. Being told you have prostate cancer can be overwhelming. Infopool made sense of the medical jargon that had left me so confused and its videos of men in the same situation as me, helped me emotionally.”
Professor Frank Chinegwundoh MBE, Urology Lead at Newham University Hospital, part of Barts Health NHS Trust, said: “The pathway for prostate cancer is quite complicated compared to other diseases. This often leaves patients with several choices with similar outcomes but different risk profiles and possible side effects – leaving men overwhelmed.”
“This is why there is a need for an information platform like the infopool that uses animations, diagrams and videos to improve men’s, partners’ and families’ knowledge of prostate cancer. The infopool will be of value to all men but particularly to Black men (who have a greater risk of prostate cancer) and their families who will be able to find others that look like them, share similar thoughts and feelings as them and learn from their past experiences.”
