Episode 294: AYAs With Cancer: Clinical Trial Enrollment Barriers and Facilitators

"AYAs are underrepresented in clinical trials and unfortunately have one of the highest rates of being uninsured of any population. So, this is really concerning for a lot of reasons and really impacts our ability to make a difference for their treatment and outcomes," Stacy Whiteside, APRN, MS, CPNP-AC/PC, CPON®, nurse practitioner and fertility patient navigator in the Department of Hematology, Oncology, and Blood and Marrow Transplant at Nationwide Children's Hospital in Columbus, OH, told Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, during a discussion about increasing AYA enrollment in clinical trials. Whiteside is also the nursing representative for the Children's Oncology Group (COG) AYA Committee. You can earn free NCPD contact hours after listening to this episode and completing the evaluation linked below. Music Credit: " Fireflies and Stardust " by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of nursing continuing professional development by the American Nurses Credentialing Center's Commission on Accreditation. Learning outcome: The learner will report an increase in knowledge of clinical trial treatment barriers in adolescents and young adults with cancer. Episode Notes The NCPD activity for this episode has expired, but you can still earn NCPD through many other ONS Podcast episodes. Find a full list of opportunities . Oncology Nursing Podcast : Episode 9: How to Support Adolescent and Young Adult Patients With Cancer Episode 19: The Practical Side of Clinical Trials Episode 126: Oncology Clinical Trials and Drug Development Episode 260: Diversity in Cancer Clinical Trials Episode 276: Support Young Families During a Parent's Cancer Journey ONS Voice articles: Balance Hope and Quality of Life for Phase I Clinical Trials Help Patients Understand Biomarker Test Results and Clinical Trials Options Nursing Roles in Clinical Trials Use ClinicalTrials.gov to Find the Right Cancer Research Studies for Your Patients Clinical Journal of Oncology Nursing articles: Cancer Clinical Trials: Improving Awareness and Access for Minority and Medically Underserved Communities Community-Based Clinical Trials: The Role of Nurses in Increasing Enrollment Disparity of Equitable Representation in Cancer Clinical Trials: Nursing Perspectives Oncology Nursing Forum article: Examining Participation Disparities in Cancer Clinical Trials Perceptions of Clinical Trial Participation Among Women of Varying Health Literacy Levels Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer Clinical Trials ONS Huddle Card National Cancer Institute's (NCI's) National Clinical Trials Network National Library of Medicine: Clinical Trials NCI's Community Oncology Research Program Children's Oncology Group (COG) SWOG Cancer Research Network: Clinical Trials Journal of Clinical Oncology articles about COG and SWOG: The Children's Oncology Group (COG) Adolescent and Young Adult (AYA) Responsible Investigator Network: An Initiative for Advancing AYA Cancer Research in the National Clinical Trials Network SWOG S1826, a Randomized Study of Nivolumab-AVD Versus Brentuximab Vedotin-AVD in Advanced Stage Classic Hodgkin Lymphoma To discuss the information in this episode with other oncology nurses, visit the ONS Communities . To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library . To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org . Highlights From Today's Episode "Of the 90,000 newly diagnosed AYA cancer patients diagnosed each year, estimates are about 3%–14% of those patients are actually enrolled on a clinical trial. We know that clinical trials are vital for studying things like disease biology, improving survival, and improving health-related quality of life outcomes for patients. And this low enrollment really limits AYAs' access to novel therapies that are coming through the pipeline and limits research to optimize their treatment protocols, specifically in this age group and can affect their overall outcomes." TS 1:40 "You know, there's a limited availability of trials just for this age group. This age group encompasses a lot of diagnoses that just there's not a lot of patients. so things like osteosarcoma, Ewing sarcoma, some of the other rare solid tumors. We don't have open clinical trials for these disease entities, and so there's no way for AYAs to enroll. Accessibility of trials can be an issue depending on the location of where the AYAs are treated for their cancer. If they're in an adult center, they may not have access to pediatric trials they may be eligible for based on their age and the disease. And vice versa, with pediatric centers, they may not have accessibility to some adult trials that they could benefit from. Different institutions can have varying degrees of ability to actually access and enroll patients on clinical trials." TS 2:47 "One of the benefits of the COVID pandemic has been the role of telehealth and how providers and patients can access caregivers that they may not have been able to access before because of challenges with travel and things like that. Now you can make a telehealth appointment with someone who may have information about a clinical trial and access in ways that we never had before." TS 9:17 "And this study really was important not only from the collaborative efforts, but they really started utilizing patient-reported outcomes measures and health-related quality-of-life measures embedded within the trial itself, because we know how important hearing the patient voice is and the patient experience with how these trials affect patients. We can have the greatest trials in the world, but if it has really negative impacts on a patient's quality of life, what are we really gaining by doing that?" TS 12:57 "It really impacts patients' willingness to participate in clinical trials, understanding that we're not here to just throw things at them without a thought about what the cost is of care. We're really looking at making it tolerable and getting the best outcomes that we can. And so, patients really want to be a part of that because they want things to be better for people that come after them, and they're really invested more in the process when they are a participant and that they're a partner in the process and we're not just doing things to them." TS 14:27 "One of the biggest things I would encourage nurses to do is become a member of your clinical trials network, whether it's the Children's Oncology Group, the Southwest Oncology Group. All of those networks have nursing members, and you get a lot of information if you're actually a member of that group. Get involved, become a member, or go through the process because it's definitely worth it. Nurses are on all clinical trials committees, so when clinical trials kind of come down the pipeline, there's a committee that helps move that forward, that helps create and implement the trial from the beginning. And nurses really have an important seat at the table with creation of clinical trials. Nurses are in the perfect position to advocate for patients and be the patient voice during the entire process." TS 16:47 "Follow organizations on social media. Believe it or not, I learned a lot of things about clinical trials through Twitter, or X. A lot of the clinical trials networks put things out on social media about trials, about outcome, and it's a quick and easy way to flip through and just get some information that you may not see otherwise and is quicker than an Internet search." TS 17:41 "I think there's a couple things that nurses kind of need to be aware of and thinking about AYAs. One we've alluded to a lot is that AYAs typically are in a very transitional time of life, trying to gain independence and needing support. They can have jobs, school, insurance challenges. Relationships and their peers are very important. Fertility is important. And so, there's a lot of factors that weigh in where they receive care, how they receive care, and their response to care. And so sometimes you have to dive a little bit deeper to figure out perhaps what's going on with the patient, rather than assuming that they don't come to an appointment because they don't care or they're not interested." TS 23:38 "Taking the extra time to really go through why things are important and understand why they're not doing what they need to do and making sure there's a dialogue about why that's happening is really important. Because I think at the end of the day, most patients want their treatment to be successful. They want to kind of balance life and doing well and really will do the things that we ask. But I think the rapport and the relationship is the most important part to really getting them to do what we ask." TS 25:43 "I think the voice of the patient is very important, and I'm thrilled that patient-reported outcomes really have become such an emphasis in clinical trials because, again, what are we doing if we're curing patients but the price of cure is too high. And I think it's important for people to understand that a caregiver's voice, while important, is not the voice of the patient." TS 27:17 "Understand nobody knows the answer to every clinical trial question. So, it's really okay to tell a patient, 'You know what? That's a great question, and I'm going to reach out and get that information for you. And I will circle back with you.' Patients maintain the trust that way, and they know that you're going to be honest with them and you're not going to try to make things up if you don't know the right answer. So, I think how you handle those situations, even if you don't necessarily know the answer and providing that feedback to a patient that you're going to get the answer for them, they really still maintain that trust and integrity of that relationship." TS 32:30 "You know, it's really important to just remember every case matters. There are very few, you know, even at our institutions, when you're working on the unit and you have a full assignment of all AYA patients and it feels like AYA cancer is everywhere really across the United States and across the world, it's a very small population of cancer patients. And so, the only way we can improve outcomes is by studying the patient experience. And so, trying to get patients enrolled in clinical trials and getting them the most up-to-date, best care we can." TS 34:52