Table 5.
Facilitator | Subtheme | Example quotes | No. of times referenced |
---|---|---|---|
Institute a process aimed to enhance AYA enrollment | Have a program or specific coordinator focused on AYA clinical trial enrollment | “I’m actually the AYA program coordinator. So anytime we get a patient. … I’ll get a call from either our adult side or our pediatric side and we’ll find out what’s the best fit for them on either side or what kinds of needs they have. Talk about fertility or whatever they need really from the beginning until the end.” (Female, 35-44 years, Patient Advocate) | 15 |
Create a list of AYA trials and potential AYA participants | “It’s making sure that the rest of the CRA in the adult setting and the PIs have the list of everything that’s AYA. …We just make sure that they have the list of the possible to open or the AYA. So it’s a matter of making sure the right switches are on within our electronic CTMS to be able to make sure they have the information.” (Female, 45-54 years, CRA/CRN) | ||
Improve AYA enrollment by having the support of site leadership | “I think the leadership will be supportive, because they also recognize that … there is a deficiency when it comes to AYA enrollment. And I think that our head of research is actually interested in pushing that ahead, just to improve our numbers and make sure that these patients benefit from whatever is available for this patient group.” (Male, 45-54 years, Physician involved in enrollment) | ||
The availability of resources for AYAs | “Through our AYA program, anything we need in terms of fertility or—you know, they are very quickly to help us get things done.” (Female, 35-44 years, Physician involved in enrollment) | ||
Designated employee for enhancing AYA enrollment | Utilization of an AYA navigator or nurse navigators or research nurses to facilitate interactions with AYAs | “I have a nurse coordinator that’s over with pediatric and adult who is my research coordinator. So she is extremely helpful with the research side of things and explaining what things mean when I don’t understand it. And she follows both on the adult side and the pediatric side and kind of goes wherever is needed as well. … We’re lucky that in the adult side and the pediatric side, that the research person I talked about, she keeps me updated on what’s available. And she actually emails both sides. So both oncologist practices, what’s available in the age bracket. … So we’re lucky that, you know, we’re involved in with the project, every child and that is for twenty-five and under, whether it’s on the adult side or ped side, where we can really have some good conversations about what is available at our center, AYA wise for research pretty early on.” (Female, 35-44 years, Patient Advocate) | 11 |
Form AYA committees or tumor boards to facilitate departmental crosstalk | “One of the things we also do is help to coordinate our tumor board or cancer conference weekly. …The pathologists, the oncologists will pick the patients, so when they’re reviewed a cancer case conference weekly, all those patients, there’s a discussion of whether they meet eligibility for clinical trials. And we have clinical trial nurses at that meeting so that they can identify patients as they’re being discussed as being eligible.” (Female, 45-54 years, Nurse Navigator) | ||
Enthusiasm, endorsement, and communication with providers | “It starts with relationships. We have great relationships and built up that respect with, obviously, our physicians, but also the mid-levels and nurse practitioners. … So the trust that we’ve developed within the chemo nurses, too, if they identify somebody who has questions or—or who has emotional needs or has started something of concern to them, they reach out to us. So that’s a way to open the door so we can get in. And then, we can further that conversation and identify what patients need. What are they most concerned about?” (Female, 35-44 years, Nurse Navigator) | ||
Appointing an AYA champion | “…In our NCORP, the champion would be the pediatric oncologist at the pediatric hospital, right. And so I think those people are clearly, clearly going to be your champion for your first A and your AYA.” (Female, 45-54 years, NCORP Site PI) | ||
Availability of individuals to help navigate the AYA clinical trial process | “We have a really great group of financial counselors within our main location that will get everybody to make sure that they’re going to be sitting okay. I know financial burdens can be an issue because young kids that are in their mid-twenties may not be on their parents’ insurance and may have really high deductibles and it’s going to be a cost no matter what.” (Female, 35-44 years, CRA/CRN) |
AYA = Adolescent and Young Adult; COG = Children’s Oncology Group; CRA/CRN = Clinical Research Associate/Clinical Research Nurse; NCCN = National Comprehensive Cancer Network; NCORP = National Cancer Institute Community Oncology Research Program; PI = Principal Investigator.