Patient Led Penile Cancer Survey

A copy of the preliminary report can be found here

A summary video of findings can be found here

Why do we need a survey?

Penile cancer is an extremely rare cancer with a global incidence of around 36,000. Despite its rarity, out of all the male specific cancers, treatment will often cause profound physical and psychological side effects, significantly affecting quality of life. Currently there is no specific assessment tool to evaluate the patient experience of penile cancer and comparatively little is known about its impact on long-term survivorship.

John Osborne is a patient advocate member of the EAU Penile Cancer Guidelines Panel, and lead patient advocate for eUROGEN. In 2024 he designed a patient led survey for penile cancer patients. The aim of this survey is to compile a snapshot of the patient journey, globally, to help better inform clinicians and healthcare professionals about the patient experience and thus improve care. It is being supported by Orchid, the EAU Patient Office, and European Reference Network for rare urogenital diseases (eUROGEN)

The first part of the project has been to circulate an English Language version of the survey, which to date this has been completed by 74 men and a preliminary report has been created which highlights some of the most problematic areas, including awareness of the disease, psychological impact and long-term quality of life. The survey has also been translated into 10 different languages and will be circulated worldwide with further, more detailed reports on patient experience to follow in 2025.

A further aim of the survey is to identify a cohort of around 20 men who can provide a more in-depth narrative of their experience. It is hoped that a combination of the survey results and gathered narratives will provide vital insight into current unmet needs. 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.

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.