Patient Led Penile Cancer Survey

Why do we need a survey?

Penile cancer is extremely rare but of all the male specific cancers will have the most profound physical and psychological consequences. Despite many new initiatives we still know comparatively little about the impact of penile cancer in long-term survivorship.

Whilst we hear about the individual experiences of patients we do not have reliable data from the men who have had the disease about their awareness, diagnosis, treatment and aftercare. This survey is about collecting that data and using it to inform patients and clinicians about the reality of the current position and the way future services and treatments can be developed.

Who is the survey for?

The survey is designed by patients, for patients and will be reported on by patients.
It is for men who have had penile cancer and are prepared to share their experiences and to help shape future services. Participation is entirely confidential and the project is being led by John Osborne, a survivor of and patient advocate for penile cancer.

The first part of the project has been to circulate an English Language version of the survey, to date this has been completed by 68 men. With the support of the European Association of Urology (EAU) Patient Office, and the European Reference Network for rare urogenital diseases (eUROGEN), the survey has now been translated into 10 major European languages so that a truly global picture can be developed. It is hoped that up to 400 men will complete the survey.

Alongside this a series of in-depth interviews will be conducted with 20 of the men who have completed to the survey to get a greater understanding of their patient journeys.

The importance of this patient-led project has been recognised by the European Association of Urology (EAU) Patient Office and was highlighted at a Roundtable discussion during the 2024 EAU Congress. It has subsequently been funded by the Patient Office with the support of Orchid and eUROGEN.