FREQUENTLY ASKED QUESTIONS (FAQ)
5 th IKCC Global Patient Survey on Kidney Cancer

Find answers to all your questions about the 5th Global Patient Survey on Kidney Cancer (GPS). If you have additional questions or need support, please contact Rebecca Cubbage at events@ikcc.org.

Q: What is the Global Patient Survey on Kidney Cancer (GPS)?

A: The 5th IKCC Global Patient Survey on Kidney Cancer is a patient-centred survey designed to
identify geographic differences in patients’ experiences. It highlights best practices and unmet needs
related to patients’ access to care, assesses quality of life, determines the prevalence of shared
decision-making, and measures involvement in clinical trials. It is done biennially.
This marks 10 years of collecting data specific to the experiences of people living with kidney cancer,
providing a decade of data. It will be possible to track positive and negative trends, demonstrate
changes over time, and use patient insights to guide future advocacy, education, and support
programs.

Q: When will the survey be open?

A: The survey will open on 24 September and close on 20 November.

Q: What languages will the GPS be available in?

A: The survey will be available in 18 languages including:

  • Arabic
  • Chinese (Simplified)
  • English (UK)
  • English (US)
  • French
  • French (Canadian)
  • German
  • Hindi
  • Italian
  • Japanese
  • Korean
  • Polish
  • Portuguese
  • Portuguese (Brazilian)
  • Spanish
  • Swahili
  • Swedish
  • Turkish

Q: Who can complete the GPS?

A: The survey is open to anyone who has lived experience with kidney cancer, whether they have
received the diagnosis or are a carer to someone who has. People who completed previous surveys
are invited to participate again.

Q: How long does the GPS take? Does it all need to be completed at once?

A: The GPS takes approximately 15 – 20 minutes to complete. If it can’t all be completed at once,
participants can save their responses part-way and return to complete the survey later by simply exiting
and returning to the survey page. This happens automatically using browser cookies.

Q: When will the results be available?

A: After the GPS closes on 20 November, the data will be analysed, and in 2027 the results will be shared in Reports that look at trends, themes, and geographic variations and measure progress on our goal of reducing the burden of kidney cancer. In addition, Country-Specific Reports will be created when more than 100 participants from one country complete the survey.

Q: Why is the survey done? Why every 2 years?

A: The information gathered in the GPS helps local patient organisations and IKCC understand the patient experience and how it is changing over time. With the information gathered, organisations can create education, awareness and advocacy programs that respond to the needs of people affected by kidney cancer.

Conducting the survey biennially (every 2 years) helps patient organisations and IKCC understand how the patient experience is changing over time, track trends and demonstrate changes.

Q: What if someone completed a survey in the past? Can they participate again?

A: Yes! People who completed previous surveys are invited to participate again.

Q: Can a link to the survey be added to my organisation’s website?

A: Yes! In addition to the template website copy in the toolkit, Partner Organisations are encouraged to embed a link to the survey on their website.

Q: Can the toolkit materials be translated?

A: Yes! We encourage Partner Organisations to adapt and translate the toolkit materials as needed. The materials are meant to make promoting the GPS easier, but communications should match the needs of your local community members.

Q: Can we add our organisation’s logo? Can the survey or communication materials be co-branded?

A: Yes! It is important that the GPS is done in collaboration with Partner Organisations. This starts at the beginning of the process when questions are developed and tested, and throughout the process of translation, dissemination, promotion and more.

In the template toolkit materials, a placeholder is there for Partner Organisation’s name to be included (or quote from spokespeople, etc.). In the creative materials, a space is left for Partner Organisations to include their logo. Partner Organisations are also invited to host a link to the GPS on their website.

Q: Why is it important for many people from my country to participate?

A: Understanding how experiences of patients in one country compare to global averages can help with planning and prioritising activities to advocate for local improvement.

Additionally, Country-Specific Reports are created when more than 100 participants from one country complete the survey. These results can help support health technology assessment and efforts to improve access to treatment and care. Results from Country-Specific Reports can also be submitted to local publications and conferences in partnership with local health professionals and other experts. This can be done in the form of written submissions, abstracts, posters and more. Results can also inform local awareness and fundraising campaigns.