Last week, a study was published in the UK which had some astonishing findings about men and prostate cancer. Two especially stood out: First, one in three men over the age of 45 would put off seeking help for prostate cancer - because they fear every diagnosis is terminal.; and second, 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.

The report, commissioned by Genesis Care with the support of Prostate Cancer UK, further found

  • 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 that if they had been better informed, they would 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 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.”

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?

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

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.

But health literacy isn’t just driven by lack of information – it’s also driven by misinformation. An international study from 2019 undertook the largest, most comprehensive examination of prostate cancer information on YouTube to date, and showed that 77% of the content in both videos and viewers’ comments “contained potentially misinformative and/or biased content within the video or comments section, with a total reach of >6 million viewers”. 

Stacy Loeb, a leading urologist at NYU, discussed this recently in a podcast interview on behalf of Zero Cancer, a US-based charity. Asked how the large amount of wrong information available online and elsewhere was harmful to men, she commented:

“if patients and their families see misleading information online it could change their decisions about their care, their perceptions about treatment options. And even if patients and their families end up discussing these options with a doctor and still receive the standard treatment, if a large portion of the medical visit is spent discussing things that people saw on the internet that are not evidence-based, then that’s that much less time available to discuss the standard treatment options. So my concern is, can it affect decision-making among patients and their families if they see some of these videos with false information that’s really compelling?’”

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 tor 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.

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