Table 3.
Illustrative Quotes About Factors that Influence AYAs' Involvement in Phase III Cancer Clinical Trial Enrollment Decision-Making
| Theme/factor | Example quotes |
|---|---|
| (−) Acute stress/distress | AYAs: “In the beginning, I was really shocked as everything was going on.” Caregivers: “So we all got hit with the shock at once.” “It is emotionally hard for the person who is right next to that person [AYA with cancer].” “I don't think he made major decisions when he was not right in the head.” Providers: “All cancer is…a really big stress. So some people are really capable of responding in capable ways…and then there are people who are limited and respond in limited ways.” “Generally, people are really upset that their kid has cancer and they are in the mindset that ‘If I do everything the doctor tells me, it will be okay.’” |
| (−) Physical illness/reduced health-related quality of life | AYAs: “My parents [made the final decision] ’cause I was like out of it.” “Although I was kind of asleep during the process…I kept zoning in.” Caregivers: “They did talk to her to the extent they could, but she was too sick at the time.” “My husband and I did it together because [our AYA patient] was too sick to participate.” Providers: “Oftentimes, the family meetings are being done without the kids because the kids are sick and they feel terrible.” |
| (+) Developmental maturity: cognition | AYAs: “For the experimental thing, they totally went to me…I just turned 18.” Caregivers: “I think they could tell just from talking to [my AYA patient]…that he is a smart cookie and that…the doctors would be able to talk to him in a way he would understand and participate.” “Age is a number and doesn't necessarily mean that you're old enough to know better.” Providers: “Can a 15 or 16 year old understand what a clinical trial means? I think that most of them can with the right kind of explanation.” “Someone is 18; they are an adult. I may modify how I present things to them but they are responsible.” “In general, adolescents have a harder time seeing the long-term.” |
| (+) Emotional maturity: autonomy | AYAs: “I was like a full-grown baby.” Caregivers: “He wasn't listened to and that discouraged him.” “I like when she participates in her care because that is part of growing up.” “My daughter has always had her own voice.” Providers: “The kids who are already kind of dependent on their parents for everything just continue to be dependent on their parents for everything.” “[The AYA's] level of involvement in the meeting is just a reflection of their level of involvement outside of that.” |
Note. (−) indicates a factor that limits enrollment; (+) indicates a factor that facilitates enrollment.
AYA, adolescent and young adult.