CLINICAL TRIAL SHORTFALL A
“Based on the survey, we can’t confirm why this is happening, but there are geographical variations which may provide some clues,” notes lead study author Dr Rachel Giles, the chair of the International Kidney Cancer Coalition (IKCC). The survey shows that in the US, 30% of people said no one talked to them about clinical trials, Giles says. The number is greater in every other country: France (40%), Canada (48%), South Korea (51%), Japan (58%), the UK (62%), and India (66%), she adds. “We know a barrier to accessing clinical trials is that too often they aren’t where patients live, and healthcare teams may not even mention them if they are too far away,” Giles notes. More sites, in more cities and more countries globally, would open the pool greatly for improved research, but also give more patients access to new treatments and regimes, she says. An overwhelming majority (90% in 2018, 70% in 2020) of patients stated that they would seriously consider joining a clinical trial if it were offered, meaning that the bottleneck is not patient accrual from the patient end of things, Giles says. Perhaps site selection allowing for more community centres would facilitate enrolment, better navigation to trial enrolment, and awareness of open trials among nursing and clinical staff should be a focus, she notes.
Survey a worldwide litmus test These results are from the IKCC’s second biennial Global Patient Survey on the diagnosis, management, and burden of RCC. This survey received 2,012 responses from 41 countries, with trends focusing on older patients revealed at a poster session in February at this year’s American Society of Clinical Oncology (ASCO) Genitourinary (GU) Cancers Symposium. Giles says the IKCC has a series of decision-aid tools to support shared decision-making, including whether or not to enter a clinical trial. She adds that the IKCC embraces the motto: “First-line choice? Think clinical trial! Second-line choice? Think clinical trial! Thinking of a third-line choice or beyond? Think clinical trial!”
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An overwhelming majority (90% in 2018, 70% in 2020) of
As per the ASCO GU abstract, the IKCC survey had 35 questions on the diagnosis, management and burden of RCC across six topics, which includes patient education, experience and awareness, access to care and clinical trials. The questions also covered best practices, quality of life and unmet psychosocial needs. The survey was conducted in 13 languages via IKCC’s 46 affiliate organisations from October 2020 to January 2021. Findings from the survey include that in 42%
of respondents, the likelihood of surviving cancer beyond five years was not explained. Also, only 51% of patients said that they were involved as much as they wanted to be in developing a treatment plan. As many as 56% of patients experienced barriers to treatment. Also, 48% have been offered a biopsy, with
only 3% of these patients refusing. Some 47% would be open to a biopsy in the future. A biopsy can be a key recruitment criterion in clinical trials, helping to confirm a patient’s diagnosis, as well as cancer type.
Older patients need more assistance The survey also revealed age-specific trends, according to the poster. For instance, as many as 38% of patients over 66 years old did not understand the five-year risk of recurrence, compared with 28% of patients between 45 and 66 years old. Further, 47% of patients in the older age group did not understand the five-year risk of mortality at diagnosis, versus younger patients. These findings are particularly relevant in
kidney cancer, where the average age of patients at diagnosis is 64 years old, particularly within the age range of 65 and 74. Kidney cancer is uncommon in under-45s.
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