International Kidney Cancer Coalition and Picker Announce Key Findings from Global Survey

The International Kidney Cancer Coalition (IKCC), in partnership with Picker, a leading international health and social care charity, is proud to announce the release of the results from its biennial global Kidney Cancer Patient Experience Survey. Launched in 2018, this ongoing initiative aims to improve the collective understanding of kidney cancer patients’ experiences and unmet needs worldwide.

The 2022 iteration of the survey, conducted in 15 languages and spanning 39 countries, received 2,213 responses from patient’s and carer/caregiver’s. The survey collected valuable insights into patient knowledge, expectations of treatment, shared decision-making, quality of life, barriers to treatment, clinical trials and research awareness. New questions were introduced to explore small renal masses biopsy and surveillance, surveillance preferences following surgery, and genetic testing.

Key Findings from the 2022 Global Kidney Cancer Patient Experience Survey:

• Lack of Understanding: The survey revealed that there are areas where kidney cancer patients indicated a lack of understanding concerning their diagnosis, treatment options, medical care, and treatment. Notably, 42% of respondents reported not being informed about the likelihood of surviving their cancer beyond five years when planning their treatments.
• Emotional Support: The results underscore the importance of emotional support for kidney cancer patients. Only 36% of respondents reported that their doctor or healthcare professional was “very helpful” when discussing their concerns. This indicates a need for improved communication and support mechanisms for patients facing this diagnosis.
• Genetic testing: One in five (19%) respondents reported they met some or all of the criteria for genetic testing (diagnosed under 46 years old, family history of kidney cancer, or bilateral disease) but were not offered genetic testing. Further investigation into the circumstances of when genetic testing is offered would be beneficial to understand and mitigate any existing barriers.

These findings are crucial to enhancing the patient experience and improving kidney cancer care globally. The data collected will be used to compare patient experiences globally, identify best practices, and facilitate knowledge sharing among healthcare professionals, researchers, and organisations dedicated to kidney cancer.

Rachel Giles, CEO of IKCC, commented on the significance of the survey:

The Kidney Cancer Patient Experience Survey is a vital tool in our ongoing efforts to advocate for kidney cancer patients worldwide. By listening to their voices and addressing their needs, we can work together to improve outcomes and support for those affected by kidney cancer

Sarah Gunn, Senior Project Manager at Picker, said,

Picker is honoured to continue our partnership with IKCC in administering this critical survey. The insights gathered are instrumental in driving patient-centred improvements and ensuring that the patient’s and carer’s voice is heard throughout the patient’s treatment journey

Ends 

• Notes for Editors 
• Picker is an international charity working across health and social care.  Established in the US in 1987 and UK in 2000, our work is at the forefront of understanding and furthering the link between patient experience, person centred care, and clinical excellence.  We believe in high quality person centred care for all, always.   
• Our survey package is built on decades of expertise, putting Picker at the forefront of mixed-methodology survey deployments – combining paper and digital for the most robust, measurable results.  We interrogate the links between staff morale and patient experience and are consistently working to define terms and measure outcomes more effectively.
• The International Kidney Cancer Coalition (IKCC) is a global network of kidney cancer patient organizations representing over 45 countries. IKCC works collaboratively to unite, support, and advocate for the rights and interests of kidney cancer patients worldwide. To learn more, visit their website.
• media enquiries, please contact the Marketing & Communications Manager at Picker, Lorraine Pullen pressoffice@pickereurope.ac.uk Mobile: 07825 952160