A lack of understanding, communication, and more was expressed among both patients and caregivers regarding a subtype of kidney cancer.
There exists a lack of understanding regarding renal cell carcinoma (RCC), clinical trials, and psychosocial impact for patients with this disease, according to results from the global survey were presented as a poster during the ESMO Congress 2021.
“(This) indicates opportunities to improve communication about diagnosis, psychosocial impacts, and clinical trials, as well as biopsies, physical exercise, and patient engagement,” wrote Dr. Rachel H. Giles, chair of the International Kidney Cancer Coalition, and colleagues wrote in the poster.
Of note, kidney cancer is the seventh most common cancer, although little is known about variations in patient experience and best practices in different countries.
The survey consisted of 35 questions focused on the diagnosis, management, and burden of RCC. It was distributed in 13 different languages to patients with kidney cancer and their caregivers between October 29, 2020, and January 5, 2021. The survey reached 2,012 (1,586 patients, 417 caregivers, 9 undisclosed) participants from 41 countries.
“The survey identified several actionable deficits,” according to the poster.
According to the survey, 42% of participants reported that the likelihood of surviving their cancer beyond 5 years was not explained, whereas 51% reported that they were involved as much as they wanted to be in developing their treatment plan. Fifty percent of younger-onset patients (< 46 years) did not know their tumor subtype and 56% experienced barriers to their treatment. Of the surveyed population, 74% took fewer than 3 months to obtain a correct diagnosis.
Regarding clinical trials and perspectives on biopsies, 41% of respondents indicated that no one discussed cancer clinical trials with them, 46% had a biopsy and 3% said they were not willing to undergo an additional biopsy if asked.
For physical activity, survey results that 45% of respondents were insufficiently active and 55% said that they very often or always experienced a fear of recurrence.
Several questions in the survey also focused on psychosocial effects of the disease. Nearly a quarter (26%) of respondents reported that they either very often or always experienced stress related to financial issues and 50% experienced disease-related anxiety very often or always. More than half of participants (52%) reported talking to their doctors or health care teams about their psychological well-being.
Giles RH, Maskens D, Martinez R, et al. Patient-Reported Experience of Diagnosis, Management, and Burden of Renal Cell Carcinomas: Results from a Global Patient Survey in 41 Countries. Presented at 2021 ESMO Congress; September 16-21, 2021; Virtual. Abstract 671P