How decision aids help men to be more informed and have a more active role in choosing their treatment

 

Perhaps one of the most understated and underappreciated aspects of a prostate cancer diagnosis is the impact it has on a man’s mental and emotional wellbeing.

“Knocked for six” and “state of shock” are often-heard descriptors of the experience and, while each man is unique in how he receives and processes the news, all men will face mental & emotional challenges in how they embark on the next steps in the diagnostic pathway to select and prepare for treatment.

For some men, these challenges are particularly onerous if their decision process is compromised by anxiety, misinformation, brain fog or all of the above. Several decision tools have been developed and tested in recent years to support men in their decision-making on treatment and to enhance the communication between doctor and patient.

A Canadian study which assessed the impact of decision aids on the treatment decisions of over 31k cancer patients found that:

“Decision aids reduced the proportion of undecided participants and appeared to have a positive effect on patient‐clinician communication. Moreover, those exposed to a decision aid were either equally or more satisfied with their decision, the decision‐making process, and/or the preparation for decision making compared to usual care.”

It concluded:

“Compared to usual care across a wide variety of decision contexts, people exposed to decision aids feel more knowledgeable, better informed, and clearer about their values, and they probably have a more active role in decision making and more accurate risk perceptions. There is growing evidence that decision aids may improve values‐congruent choices. There are no adverse effects on health outcomes or satisfaction. New for this updated is evidence indicating improved knowledge and accurate risk perceptions when decision aids are used either within or in preparation for the consultation. Further research is needed on the effects on adherence with the chosen option, cost‐effectiveness, and use with lower literacy populations.”

A more recent study on decision tools focused on two types specifically for men choosing treatment for prostate cancer. It tested the impact of a complex medical oriented DA compared to a more simplistic decision aid designed to encourage shared decision making in men with clinically localised prostate cancer.

The study demonstrated that a simple decision tool led to an increased desire for shared decision making and, significantly, for less aggressive treatment.

The positive impacts of Predict Prostate

Here in the UK we have a widely available decision tool to support men in choosing treatment for prostate cancer called Predict Prostate.

According to David Thurtle who helped to develop the tool with the Urology Foundation:

“Every patient who is diagnosed with localised prostate cancer has to make a decision about what to do next, whether to monitor the cancer carefully or to pursue upfront treatment. If treatment is chosen, more decisions need to be made about which treatment is right.”

Providing accurate survival predictions is one of the hardest things a clinician is asked to do. As part of his research David surveyed nearly 200 prostate cancer specialists to assess perceptions around survival following prostate cancer diagnosis, and likelihoods of recommending treatment.

The results demonstrated huge variations in clinician perception of long term survival, with predictions of prostate cancer death ranging from 5-95% in some clinical scenarios.

Unsurprisingly, the likelihood of recommending treatment varied significantly too. Counselling patients with the best information available isn’t always straight-forward, but this tool hopes to inform and standardise that process.

TFTC consultant urologist Marc Laniado is a strong advocate for Predict Prostate and has seen the positive impact it has on his patients:

“When a man is told he has prostate cancer, often the first things in his mind are how long have I got to live? Am I going to be around this Christmas? Next year? What’s my outlook? And traditionally, we’ve been, as doctors, unable to tell people exactly how well they’ll do just by no treatment, how well they’ll do with treatment, and what are the potential side effects from the treatment that they might receive? So there’s been some fantastic work in developing the prostate tool available on the NHS online to all people who want to go to it. That tool really empowers men when they’re deciding about what sort of treatment they’re going to have, and how much treatment they’re going to tolerate.”

He describes how Predict Prostate helps shift the conversation with patients from the drastic to the realistic.

“You can imagine if you’re told that you’ve got cancer and you may have a year or two to live or something of that nature, you might say, well, I’ll take whatever treatment you can give me, as drastic as it may be to give me the maximum amount of life expectancy that’s possible. But your attitude might be slightly different if it turns out that, well, actually, the chance of dying from this disease in the next ten or 15 years is actually relatively low. And so armed with that knowledge, that the disease perhaps may not be as threatening as you first thought, you might think of things or think of common treatments in a slightly different way. And you might be more willing or open to consider other options that could come up.”

A multicentre randomised control trial of the clinical impact of Predict Prostate was published in September. Its main objective was to assess the impact of the tool on patient decision-making and disease perception. It concluded:

“Predict Prostate reduces decisional conflict and uncertainty, and shifts patient perception around prognosis to be more realistic. This randomised trial demonstrates that Predict Prostate can directly inform the complex decision-making process in prostate cancer and is felt to be useful by patients.”

Evidence increasingly shows that using an individualised risk communication tool, such as Predict Prostate, reduces patient decisional conflict and uncertainty when deciding about treatment for localised prostate cancer. The tool leads to more realistic perceptions about survival outcomes and prognosis.

Have you used the Predict Prostate tool, or are keen to try it? We’d love to hear from you.

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