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Giving the patients a voice

The unmet needs of urological cancer survivors were addressed today during the Specialty Session “EAU Patient Information Session“.

Prostate cancer

In his presentation on prostate cancer (PCa), Chairman of Europa Uomo and cancer survivor, Mr. Ken Mastris (GB) stated that “We are asking the EU to help sustain awareness regarding PCa, provide the means to improve both diagnosis and treatment, and support equity of management for all.”

Bladder cancer

A bladder cancer survivor himself, Mr. Andrew Winterbottom (GB) urged people to show support through six pledges. Of Pledge 1: Listen to us, he said “We as patients know a lot about the subject, too. We live it from symptoms, diagnosis, and treatment to aftercare. We can help you [urologists] gain additional insights.”

For Pledge 2: Talk about bladder cancer, he called for more open discussions about the fifth most common cancer in the world. Good quality, easily to read and easy to understand information that involves patients in its development was the core message of Pledge 3: Provide accessible patient information.

“It is not just about the treatment,” said Winterbottom about Pledge 4: Provide support which also correlated with both Pledge 5: Campaign with us to disseminate vital information on bladder cancer and Pledge 6: Show us you care. “Together we can make a difference.”

Survey results

There is a lack of appropriate information and consistency for prostate cancer patients along their disease journey, according to qualitative study conducted in France, Germany and Spain. The results were discussed by Dr. Patrick Cabri (BE) of Ipsen in his presentation “Prostate cancer: unmet needs of patients and their relatives (survey results)”. Cabri said, “There seems to be a need for information addressing key questions that patients (and their partners) have at each stage based on real-life situations.”

Kidney Cancer

In her lecture “The unmet needs of urology cancer survivors”, Prof. Dr. Rachel Giles (NL) said there were five needs including “Awareness of kidney cancer” and “Navigating the options: a decision aid tool” where she spoke of the efforts of the IKCC (International Kidney Cancer Coalition) to generate a decision-aiding tool for kidney cancer support groups which can be used to talk to patients, discuss with nurses, and go through the different pathways that may or may not be available to patients in their individual countries. Giles further addressed the needs “Patient information about clinical trials”, “Promoting evidence and eminence-based approaches”, and “Meaningful and sustainable engagement.”

By Erika de Groot