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UPDATE
n°138 | November 26, 2020
In this issue:
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Quality of life research can be a campaigning tool

Europa Uomo publishes accessible version of EUPROMS findings
13 Nov 2020
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PSA screening works: now Europe must act

Strong message from European Prostate Cancer Awareness Day event
18 Nov 2020
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Candles mark a major screening development

The Finnish parliament has decided to introduce a national screening programme
25 Nov 2020
Europa Uomo News

EUPROMS

Over this and further issues of Update we will take a closer look at some of the main features of the Quality of Life survey. These are from a patient-friendly version of the results that has been prepared.

This slide [G1] shows all the respondents rating their quality of life from one to seven, and the percentage in each category. You will see that respondents’ quality of life is generally good. But as we will see in the next slide [G2], some aspects of life are better than others.

The next slide [G2] shows how different aspects of quality of life are affected after treatment. The lower the score, the lower the quality of life. It’s clear that lack of sexual function, and to a lesser extent incontinence, affect men’s quality of life much more than other treatment after-effects. This slide shows quality of life scores, so the lower the score the worse the quality of life.

You can see from the next slide [D1] that although treatments may treat the cancer it may do so at the cost. Men’s physical discomfort increases as men move through the treatment stages. Once you get to chemotherapy at the advanced stages, more than three times the pain and discomfort is reported compared to early-stage treatments.

During treatment for cancer patients often complain of tiredness or fatigue. Bearing in mind the average age of those answering the survey it should not be a big surprise that treatment can result in tiredness. Slide D2 looks at the form of treatment and the reported levels of tiredness. There are aspects of treatment which can have a greater effect on a man’s life. This slide shows that men undergoing chemotherapy have a significantly higher level of tiredness than those who are having other treatments.

In mental health, the study found that 42% of men who have been treated for prostate cancer say they are anxious or depressed to some extent. Which treatments are most linked with mental health problems? Slide M4 shows that the problems seem to get worse the more advanced the cancer, when men are more likely to be receiving ADT and chemotherapy. Which treatments are most linked with mental health problems? You can see again that the problems seem to get worse the more advanced the cancer.

It’s interesting to note that active surveillance is associated with higher levels of depression or anxiety than some treatments, such as radical prostatectomy and radiotherapy. This may have something to do with the long-term worry that can be brought about by regular testing, and the fact that treatment decisions may still have to be made. A survey of men on active surveillance by one of Europa Uomo’s members, the Danish prostate cancer patients’ organisation PROPA, found that 37% felt seriously or moderately worried.

In the next issue we will take a closer look at further aspects of the survey.

Prostate Cancer: "My life on active surveillance"

A Movember Story from Italy from La Republica
By Tiziana Moriconi

On the occasion of Movember, the men’s health awareness movement, Salute dedicates a special to prostate cancer, gathering the voice of many experts and telling the story of Cosimo, who has lived with the disease for three years

“The first thing the urologist told me was that I would have three possibilities. It’s certainly not what he expects to hear from those who get a cancer diagnosis.” Speaking is Cosimo Pieri, former manager from Milan, born in 1952, with a great passion for skiing and a pilot’s license taken when he was 56 years old. He has been with prostate cancer for three years.
We collected his testimony on the occasion of the month dedicated to male health and, in particular, to the prevention of prostate cancer: the one that more than any other affects men over 50 years of age. There are many initiatives for this Movember, the awareness movement on this cancer. And to his early diagnosis and treatment, Salute dedicates the special Prostate, do not forget about health of the male, with interviews with some of the leading Italian experts among urologists, radiotherapists and oncologists, and with an in-depth study of benign prostate hypertrophy [BPH].

Diagnosis and illusion
“I was under the illusion” – Cosimo says – “that I was informed about prostate cancer: I knew that it was common among men and with a high survival. I thought, taken in time, it was something that is taken off and away, everything like before. Let’s go back to the three possibilities: I could have an operation or have radiotherapy, but with possible side effects. Or not have active treatment at all and enter the active surveillance program, because my cancer – the doctor told me – was not a very serious problem. I had already had a melanoma removed in the past, so his comment that a tumour was not a very serious problem was a strange and new statement for me”.

Cosimo’s story actually began seven years before this episode, in 2010, also in the study of a urologist, from which he had gone for urinary disorders due to benign prostate hypertrophy (enlarged prostate). Everything had been resolved with an intervention and since then Cosimo had started doing the PSA test and checked it every year. This is how in 2017 the doctor discovered a lump in the prostate. At the same time, the PSA was twice as high as the previous value (from 0.7 to 1.4), although still below the value considered a “threshold” in oncology. Subsequent tests confirmed the suspicion: it was a tumour, but fortunately grade 1, which means non-aggressive.

Finding information
“I needed more information to decide and confront someone, so I went to Europa Uomo, an association of patients and doctors. And I found the answers I was looking for,” Cosimo continues. “It may seem like a cliché but it is true: we men always try to solve problems ourselves, not to ask for help. But in the short time of a visit doctors can’t give you all the information you need to make certain decisions. And often the patient when he leaves the hospital is left alone. Sometimes the ground underfoot is missing: after the diagnosis you are led at certain times to depression or to want to overdo it to fully experience everything”.
state cancer, the psychological consequences
Cosimo’s conscious decision was to enter the active surveillance programme, in which it is still, with regular checks, established by a protocol. “Doctors like Prof. Valdagni really made a difference for people with prostate cancer, because until a few years ago we just intervened, with all the consequences that this can have for the quality of life. I’m not his patient, so I don’t have conflicts of interest,” Cosimo jokes.

Knowing makes a difference
One aspect that must always consider who enters the surveillance is the psychological one: “Having spent my life solving problems and managing stress I think has accustomed me not to suffer too much from anxiety”, he says: “For me this was the best solution, also strong in the support of my family. On the other hand, I see many men who live uncomfortably from having to undergo tests and do not know how to deal with the fear of cancer, who see it as a stigma. In these cases you have to be psychologically assisted, because support is more important than you think. The other really fundamental aspect is to be followed not by a single doctor, but by a multidisciplinary group, as happened to me. I figured that out later, but now I know it makes a difference.” There is an important social message to pass on to Cosimo: “Men need to know that a very high percentage of those who discover prostate cancer can do active surveillance, and this is an important incentive to get checked out. In Europa Uomo Italy, of which I am a member today, we organize free visits and awareness-raising campaigns. “In recent years I have learned a lot of things that can make a difference to how you experience the disease. Whichever way you choose to go, there’s so much you can do to live better.”

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EAU Patient Information Newsletter No.3

There is plenty of interest regarding prostate cancer matters in the latest edition of the EAU Patient Information. Among the items featured:

EPAD

The European Prostate Cancer Awareness Day aims to raise awareness and enhance knowledge of prostate cancer. Last week oncology specialists, patient advocates, politicians and policymakers gathered for EPAD20 online and in Brussels. For those of you who missed the live virtual event, the recording of the full event can be found here.

Milan EAU21

The EAU hopes to return to an in-person Congress in Milan in July

The deadline for the abstract submission for the EAU Patient Poster Abstracts has been extended until 1 February 2021.
Do you have compelling patient research insights in urology-related diagnostics, treatments or follow-ups? Then this is your chance to share your knowledge, to participate and to contribute to a meaningful dialogue with experts about what matters to you. Submit your work and present it to one of the largest urology audiences in the world. Read more.

European Androgen Deprivation Therapy (ADT) Educational Programme 

The Androgen Deprivation Therapy (ADT) Educational Programme was developed to help prostate cancer patients manage the side effects of ADT through an interactive educational programme built around the ADT Book. The programme is designed to help prostate cancer patients take appropriate actions to reduce or avoid the negative impact of ADT. The goal is to help prostate cancer patients maintain good quality of life and also strong intimate relationships while on ADT. Read more.

EUPROMS

The Issue also features our EUPROMS , with the headline “Europa Uomo believes that quality of life should be at the top of decision makers’ agendas”

Quality of life for men with prostate cancer is intrinsic to all Europa Uomo’s work. Early diagnosis brings quality of life benefits because the effects of cancer and its treatments are likely to be far greater if diagnosed late. High quality, personalised treatment in specialised centres can also bring better quality of life.

PIONEER

Pioneer is paving the way for individual patients to receive the right treatment and at the right time. What matters to patients, matters.

At the start of PIONEER, the EAU Prostate Cancer Guideline panel and other Key Opinion Leaders were contacted to identify the most important knowledge gaps. Afterwards, the PIONEER consortium performed a prioritisation survey among two stakeholder groups: healthcare professionals including pharmaceutical companies and prostate cancer patients to identify and prioritise a list of the top five research questions in prostate cancer. Read more.

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Items of Interest

From CancerWorld: Richard Sullivan writes about Cancer and Value

‘Value’ is the latest buzzword in cancer: value-based pricing, delivering value for cancer care, enhancing the value offering for cancer technologies… It makes sense, as focusing on the value of interventions we invest in is the only way to stop wasting precious health resources on poor value healthcare interventions and missing out on interventions that could offer particularly good value.

And yet ‘value’ is among the most misunderstood and misused words in the health policy lexicon. This reflects, in part, an inherent confusion among clinicians and policy makers between the concepts of value, benefit, price, expenditure, and affordability. But it also reflects a perception that the value of a given healthcare technology is not amenable to objective measurement – like beauty, its value lies ‘in the eye of the beholder’. This can certainly be the impression given by the many arguments over how value should be defined, as producers of healthcare technologies, healthcare professionals, patients and payers seek to influence the way decisions are made regarding what should be reimbursed and at what price. But the impression is not accurate.

To read more click: Value and cancer – this is how we reverse the decline – Cancerworld

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