Men poorly informed about Prostate Cancer Treatment

Last week, a study was published in the UK which had some astonishing findings about men and prostate cancer. Two especially stood out:

  • One in three men over the age of 45 would put off seeking help for prostate cancer – because they fear every diagnosis is terminal
  • Research into 1,200 men, over 45, also found nearly two-thirds (62 percent) believe undergoing treatment for prostate cancer can result in side effects that could impact quality of life

Clearly men do not understand the prostate cancer treatment options potentially available to them and rarely get an independent second opinion on their prostate cancer treatment options.
The report, commissioned by Genesis Care with the support of Prostate Cancer UK, further found

  • Of those who have received treatment, almost half (48 percent) wish they had known more about how the treatment could have been personalised to them.
  • of the men diagnosed with prostate cancer, more than half (58 percent) wish they’d known more about the treatment options available.
  • more than a third (34 percent) believed if they had been better informed, they’d have chosen a different treatment pathway.
  • Despite the prominence of prostate cancer – with one in eight men being diagnosed with the disease in their lifetime – nearly a third (31 percent) of men aren’t sure what therapies are used
  • nearly a fifth (17 percent) believe treatment for prostate cancer is comprised of chemotherapy alone.

Commenting on the report’s findings, the CEO of Prostate Cancer UK pointed out that recent advances in prostate cancer treatments have improved outcomes, “so it’s important that men understand their treatment options and feel empowered to make a decision that’s right for them.” This demonstrates the need for a second opinion on each man’s prostate cancer treatment options over and beyond what may be available within their local NHS environment.

Empowering men to make informed decisions

Decisions require information, confidence and commitment, and the disturbing findings of this report raise the question of how you empower men diagnosed with prostate cancer to make informed decisions? How do you inform, educate and instil the confidence required to make them? How do you make them aware of the need to access information beyond that available in their local NHS trust.

Another way of looking at this question is through health literacy. The NHS defines health literacy as follows: Health literacy is about a person’s ability to understand and use information to make decisions about their health.

A user with low health literacy will generally struggle to:

  • read and understand health information
  • know how to act on this information
  • know which health services to use and when to use them
  • look for an independent second opinion on their prostate cancer treatment options

Fear of Prostate Cancer Treatment Side Effects impacts screening

So how does health literacy impact men and their prostate health? As the research described earlier shows, very strongly. Further investigation shows that it impacts how men consider and approach screening. An American study published earlier this year surveyed over 12,000 men demonstrated a positive association between self-reported health literacy and the likelihood of PSA screening, and concluded that “while PSA screening can be controversial, health literacy may serve as a window into which patients are more likely to be proactive in their urologic care”.

Research at Harvard Medical School reinforces the UK study on health literacy and treatment decisions, demonstrating links between health literacy and treatment choice specifically for men with slow-growing prostate cancer.

Understanding your treatment options

Men with early stage prostate cancers need to understand the modern focal therapy treatment options for prostate cancer which offer a less drastic alternative to robotic prostatectomy or hormone/ radiotherapy treatments. This is where an expert independent second opinion on their prostate cancer options can add value.

Improving health literacy isn’t confined to a particular age, race or location, and fixing it doesn’t happen overnight.

Even if there was a continuous stream of vetted information to all men supplied through a range of media channels, not all men are ready to or able to listen. It really is a case of the right information accessible at the right time, as decisions require both accurate and timely information and the confidence to take that information for self-advocacy.

Fortunately there is a body of dedicated campaigners and organisations committed to providing the right information about prostate cancer to the right people at the right time and in the right place, and during this month of November the Movember campaign stands out as exemplary. As the research described here shows, it is sorely needed and a long haul.

if you have questions about treatment options for prostate cancer, we’d love to hear from you.