📄 Preliminary report available here
🎥 Summary video of findings available here
📋 If you have been treated for penile cancer, complete the survey here
Why is this survey needed?
Penile cancer is an extremely rare disease, with a global incidence of approximately 36,000 cases. Despite its rarity, it has some of the most profound physical and psychological consequences among male-specific cancers, significantly impacting patients’ quality of life. However, there is currently no dedicated assessment tool to evaluate the patient experience of penile cancer, and comparatively little is known about its long-term effects on survivorship.
In response to this gap, John Osborne, ERN eUROGEN ePAG Chair and patient advocate on the EAU Penile Cancer Guidelines Panel, developed a patient-led survey in 2024. This initiative aims to capture a global snapshot of the patient journey, providing valuable insights to help clinicians and healthcare professionals improve care. The survey is supported by Orchid, the EAU Patient Office, and ERN eUROGEN.
Progress so far
The first phase of the project involved distributing an English-language version of the survey, which has already been completed by 74 men. A preliminary report has been compiled, highlighting key areas of concern such as:
✅ Lack of awareness about the disease
✅ Psychological impact on patients
✅ Challenges in long-term quality of life
To reach a wider audience, the survey has been translated into 10 different languages and will be circulated globally, with more detailed reports on patient experiences expected in 2025.
Next steps: Deeper insights through patient narratives
In addition to survey data, the project aims to identify a cohort of approximately 20 men who will share more detailed personal experiences. By combining quantitative survey results with qualitative patient narratives, the initiative hopes to shed light on unmet patient needs, guiding improvements in care and support for penile cancer survivors.
The importance of this patient-led initiative has been recognised by the European Association of Urology (EAU) Patient Office, which featured it in a Roundtable discussion at the 2024 EAU Congress. It has since received funding from the Patient Office, with the support of Orchid and ERN eUROGEN.
This project represents a crucial step forward in understanding the realities of living with penile cancer and ensuring that patient voices play a central role in shaping better care.
