TY - JOUR
T1 - Patient-reported Experience of Diagnosis, Management, and Burden of Renal Cell Carcinomas
T2 - Results from a Global Patient Survey in 43 Countries
AU - Giles, Rachel
AU - Maskens, Deborah
AU - Brick, Robert
AU - Martinez, Robin
AU - Packer, Malcolm
AU - Heng, Daniel
AU - Larkin, James
AU - Bex, Alex
AU - Jewett, Michael
AU - Jonasch, Eric
AU - MacLennan, Sara J.
N1 - Funding/Support and role of the sponsor: This project was funded by equal unrestricted grants from Bristol-Myers Squibb, Ipsen Pharma, Novartis, and Pfizer according to the IKCC code of conduct governing corporate funding (ikcc.org). The sponsors were not involved in the design or analysis of the survey or approval of the final manuscript.
PY - 2022
Y1 - 2022
N2 - The International Kidney Cancer Coalition (IKCC) is a federation of 46 affiliated patient organisations representing 1.2 million patients worldwide that is committed to reducing the global burden of kidney cancer. A large-scale global survey of patients with renal cell carcinoma (RCC) to capture real-world experiences has never been undertaken. The 35-question survey was designed to identify geographic variations in patient education, experience, awareness, access to care, best practices, quality of life, and unmet psychosocial needs. A total of 1983 responses were recorded from 43 countries in 14 languages. Analysis revealed key findings. (1) At diagnosis, 43% of all respondents had no understanding of their RCC subtype. (2) Shared decision-making remains aspirational: globally, 29% of all patients reported no involvement in their treatment decision, responding “My doctor decided for me”. (3) While 96% of respondents reported psychosocial impacts, surprisingly, only 50% disclosed them to their health care team. (4) Lastly, 70% of patients were not asked to participate in a clinical trial, although 90% indicated they would be interested. The survey reflects patient perspectives from diverse clinical scenarios in which different treatment options are available. The data point to actionable deficits in the fields of clinical trials, psychosocial support, and shared decision-making.
AB - The International Kidney Cancer Coalition (IKCC) is a federation of 46 affiliated patient organisations representing 1.2 million patients worldwide that is committed to reducing the global burden of kidney cancer. A large-scale global survey of patients with renal cell carcinoma (RCC) to capture real-world experiences has never been undertaken. The 35-question survey was designed to identify geographic variations in patient education, experience, awareness, access to care, best practices, quality of life, and unmet psychosocial needs. A total of 1983 responses were recorded from 43 countries in 14 languages. Analysis revealed key findings. (1) At diagnosis, 43% of all respondents had no understanding of their RCC subtype. (2) Shared decision-making remains aspirational: globally, 29% of all patients reported no involvement in their treatment decision, responding “My doctor decided for me”. (3) While 96% of respondents reported psychosocial impacts, surprisingly, only 50% disclosed them to their health care team. (4) Lastly, 70% of patients were not asked to participate in a clinical trial, although 90% indicated they would be interested. The survey reflects patient perspectives from diverse clinical scenarios in which different treatment options are available. The data point to actionable deficits in the fields of clinical trials, psychosocial support, and shared decision-making.
KW - kidney cancer
KW - clinical trials
KW - psychosocial support
KW - shared decision-making
KW - patient-reported experience
U2 - 10.1016/j.euros.2021.12.003
DO - 10.1016/j.euros.2021.12.003
M3 - Article
VL - 37
SP - 3
EP - 6
JO - European Urology Open Science
JF - European Urology Open Science
SN - 2666-1683
ER -