Spotlight needs to remain focused on bridging barriers to patient enrolment in cancer clinical trials

A recently published survey by IRC CAROLINE research fellow Dr Cathriona Kearns at UCD, revealed that only 5% of cancer patients asked their doctor about participating in a clinical trial if they had not already been offered the chance to take part. The study also revealed a high level of misunderstanding among cancer patients about how clinical trials work. This was higher among older patients, those that were widowed, those living in provincial small towns and those with fewer years education.

Clinical trials for cancer research are essential for testing the safety and effectiveness of potential new treatments.  Many cancer patients benefit from drugs that are being tested in clinical trials that are not yet available through the Irish health service making them a viable treatment option.

This nationwide survey of 1089 Irish cancer patients was undertaken by Cancer Trials Ireland, the largest collaborative cancer research infrastructure in Ireland, to explore cancer patient attitudes and understanding of cancer clinical trials. It revealed that while few patients (3%) declined a clinical trial when offered, the majority of cancer patients surveyed (66%) had never been offered the option to take part in a clinical trial. While not all patients will be eligible to take part in a particular trial, the ultimate goal of Cancer Trials Ireland is to have clinical trial options available for all patients.

In any trial, the new drug or device must be assessed against the standard treatment. This means some people on the trial will get the ‘normal’ treatment while others will get the ‘new’ treatment. Who gets which is decided by chance, called randomisation. Many cancer patients in the study struggled to understand this and thought that their doctor would be able to get them the best treatment on a clinical trial. This was despite 87% of previous clinical trial participants reportedly understanding the trial explanation.

Many cancer trials involve testing new drugs. We found that almost two-thirds of cancer patients in the study initially expressed a willingness to take part in drug clinical trials. However, patients that had previously participated in cancer trials changed their mind about taking part when reminded that the trial drug might be worse than the standard treatment.

We also found that 64% of younger patients had concerns that the new treatment might not work, and they had more fears of getting side-effects by taking part in clinical trials. Recognising and addressing these concerns may reduce anxiety and improve willingness to participate in clinical trials

Overall, we found most of the uncertainty and misunderstanding of cancer clinical trials was higher in older patients, those that are widowed and in those with fewer years education.  More people develop cancer as they get older. There is a very real risk of underrepresenting groups such as the elderly and those identified in the study in clinical trials. The study shows that additional information and support is needed to allow patients to ask about and benefit from clinical trials as a treatment option. It is important that new treatments are tested in all groups, failing to do so can impact on the effectiveness of treatments and leave patients behind.

This is the first nationwide study of oncology patients’ attitudes and understanding of cancer clinical trials in Ireland, and the findings can contribute towards considered interventions for improvement to help optimize accrual rates.

Link to paper 

Bio: Dr Cathriona Kearns is a Marie Sklodowska-Curie/Irish Research Council CAROLINE fellow at UCD. She is a behavioural research scientist whose area of expertise is assessing and improving communication of risk in health.  This study was undertaken as part of her project TACTIC—TAiloring the Communication of risk To Individual breast Cancer patients, Irish Research Council (IRC) grant CLNE/2018/1338 in collaboration with Cancer Trials Ireland under the mentorship of Professor Catherine Kelly consultant oncologist who led the study