Barcelona, Spain (UroToday.com) The International Kidney Cancer Coalition (IKCC) is a federation of 45 affiliated patient organizations representing 1.2 million patients worldwide that is committed to reduce the global burden of kidney cancer. To date, a large-scale global survey of RCC patients to capture real world experiences among clinicians and patients has never been undertaken. At the ESMO 2019 clinical congress, Rachel Giles and colleagues presented results of a global patient survey in 43 countries.
The 35-question survey was designed to identify geographic variations in patient education, experience and awareness, access to care, best practices, quality of life, involvement in clinical trials, and to highlight unmet needs. The survey was conducted from September 2018 to October 2018 and completed online or in paper form by kidney cancer patients and/or their caregivers identified by IKCC’s Affiliate Organizations. Additionally, the survey was distributed through social media in 14 different languages.
There were 1,983 responses recorded from 43 countries: 1,400 patients and 583 caregivers. Among the patients, 23% had localized kidney cancer, 33% had no evidence of disease after treatment, and 44% had metastatic disease. Analysis revealed that at diagnosis, 43% of all respondents had no understanding of their RCC sub-type, 38% were not told their subtype at diagnosis, and 11% still did not know their subtype at the time of survey. Additionally, patients with clear cell carcinoma (64%) had a notably poorer understanding of their RCC subtype than did patients with rarer RCC subtypes. While 96% of respondents reported psychosocial impacts, surprisingly, only 50% disclosed them to their healthcare team. Most commonly, 60% of patients had disease-related anxiety.
Of the 70% of patients who were never asked to participate in a clinical trial, 89% responded they would have “fairly likely” done so if asked. RCC patients <45 years old reported nearly twice as many barriers to treatment as patients >45 years at diagnosis. Furthermore, females reported longer delays to diagnosis than males. Shared decision making remains aspirational across major cancer centers and community hospitals: globally, 29% of all patients reported no involvement in their treatment decision, responding ‘my doctor decided for me’:
Finally, 92% of patients said their physical well-being was impacted since their initial diagnosis, most commonly fatigue (66%), bowel changes (33%), muscle weakness (32%), and sleeplessness (31%).
The conclusions from this IKCC survey were as follows:
- This exploratory research sheds light on the unmet needs in the RCC patient experience and warrants further analysis
- This first-ever global survey serves as a benchmark for longitudinal data collection
- Real world experience indicates opportunities to improve communication about diagnosis, psychosocial impacts, and clinical trials.
Presented by: Rachel Giles, MD, Chair of International Kidney Cancer Coalition, and Associate Professor of Internal Medicine at UMC Utrecht, Utrecht, Netherlands
Co-Authors: D. Maskens 2, R. Bick 2, R. Martinez 3, M. Packer 4, A. Bex 5, D. Heng 6, J. Larkin 7, S.J. Maclennan 8, M. Jewett 9, E. Jonasch 10
2. Kidney Cancer Canada, Toronto, CA
3. Smart Patients Inc, Mountain View, US
4. Kidney Cancer UK, Harston, UK
5. Netherlands Cancer Institute/Antoni van Leeuwenhoek hospital (NKI-AVL), Amsterdam, NL
6. University of Calgary, Calgary, CA
7. Royal Marsden Hospital NHS Foundation Trust, London, UK
8. University of Aberdeen, Aberdeen, UK
9. Princess Margaret Cancer Centre, Toronto, CA
10. The University of Texas MD Anderson Cancer Center, Houston, USWritten by: Zachary Klaassen, MD, MSc – Assistant Professor of Urology, Georgia Cancer Center, Augusta University/Medical College of Georgia Twitter: @zklaassen_md at the 2019 European Society for Medical Oncology annual meeting, ESMO 2019 #ESMO19, 27 Sept - 1 Oct 2019 in Barcelona, Spain