‘Multidisciplinary approach needed’ to boost AYA participation in cancer clinical trials
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Clinical trials play an important role in developing and evaluating potential new cancer therapies.
However, enrollment of certain populations, such as adolescents and young adults (AYAs) aged 15 to 39 years, has been a persistent challenge.
“In 2006, the National Cancer Institute Progress Review Group, in collaboration with the Livestrong Foundation, identified several areas of research with the potential to improve survival disparities in this population, and that includes expanding access to clinical trials and clinical trial enrollment,” researcher Renata Abrahão, MD, MSc, PhD, QSCERT-PC fellow at UC Davis Comprehensive Cancer Center, said in an interview with Healio. “A previous report by our team demonstrated that only 14% of AYAs were enrolled in clinical trials compared with 40% to 60% of children diagnosed with cancer, with no significant improvements in enrollment over time.”
To better understand the barriers to AYA enrollment in cancer clinical trials, Abrahão and colleagues conducted semi-structured interviews with 17 oncologists and 26 AYA survivors of cancer who had been offered and/or enrolled in clinical trials at cancer centers in California and Utah.
Abrahão discussed the findings of the qualitative study, published in Pediatric Blood Cancer, and how they might be used to increase AYA participation.
Healio: What prompted you to conduct this study?
Abrahão: Our main motivation was to better understand the barriers to AYA enrollment in clinical trials, as well as potential facilitators and areas for improvement, providing relevant information on a limited research area.
We wanted to identify a targetable and modifiable range of factors that influence AYA trial enrollment. We asked oncologists about their experiences treating AYAs with cancer, the main challenges they face to enroll these patients in clinical trials, what factors would motivate AYAs to participate in trials and potential ways to improve enrollment. For AYAs, we asked about their experiences during their cancer treatment, how they became aware of the possibility of participating in a clinical trial, and their experience of making the decision to participate or not. We also wanted to know their fears, main barriers to participation, or potential motivators and areas for accrual improvement.
Healio: What barriers did each group report?
Abrahão: Overall, oncologists and AYAs had similar perceptions of barriers to clinical trial enrollment. Both groups reported financial barriers as one of the main obstacles, particularly when the trial is at a hospital far away from the patient’s residence. This factor is aggravated when AYAs are caregivers and need to work while in treatment for their disease. Also, AYAs have a poor understanding of what a clinical trial is, the benefits it can provide, and of the severity or urgency of their disease. In addition, as these patients transition from childhood to adulthood, they may not be equipped to make good decisions about or comply with their cancer treatment. Oncologists reported important barriers continue to be the lack of open trials and strict eligibility for enrollment, lack of awareness of clinical trial availability, and late (or no) referral from primary care doctors or oncologists who work in community hospitals.
Healio: Both pediatric and adult oncologists cited lack of awareness about clinical trials and poor communication between the two groups. How might this problem be addressed?
Abrahão: It is critical that clinicians who care for AYAs are aware of the importance and availability of clinical trials to improve treatment protocols and, ultimately, survival and quality of life of these young patients with cancer. Increased awareness and better communication between pediatric and adult oncologists can be facilitated, for example, through regular emails (monthly or bimonthly) that provide a list of open clinical trials and their specific eligibility criteria. Joint tumor boards with pediatric and adult oncologists are also recommended, and this can be done virtually once a week. At this time, all available clinical trials are presented, and the eligibility criteria are discussed. Another suggestion is to facilitate the acquisition of Children’s Oncology Group membership for adult oncologists. For AYAs, education sessions provided by research nurses and clinical research coordinators can complement the information clinicians provide about clinical trials.
Healio: Overall, how might your findings be used to improve enrollment of AYA patients in cancer clinical trials?
Abrahão: By characterizing the main factors associated with low clinical trial enrollment among AYAs with cancer, we provided additional information and also reinforced some of our colleagues’ findings that can guide policy interventions. For example, a multidisciplinary approach is needed to improve participation of AYAs in cancer clinical trials. This includes psychological support for AYAs and improving education about clinical trials with help from research nurses, patient navigators, psychologists and social workers. Also, we identified that financial burden is a main barrier to clinical trial enrollment and suggested that a financial assistance program to help AYAs with lodging, meals and transportation can improve their participation in trials.
References:
Abrahão R, et al. Pediatr Blood Cancer. 2021;doi:10.1002/pbc.29479.
Parsons HM, et at. J Clin Oncol. 2011;doi:10.1200/JCO.2011.36.2954.
For more information:
Renata Abrahão, MD, MSc, PhD, can be reached at UC Davis Comprehensive Cancer Center, 2315 Stockton Blvd., Sacramento, CA 95817; email: rabrahao@ucdavis.edu.
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