Table 4 Reasons for patients’ participation in clinical trials and understanding of the purpose/content of PRO questionnaires

Reasons for participation

And in August of 2019 she looked at me and said, there's nothing further we can do, and we need to get you in clinical trials because you need time. And what mother would not say yes. Of course, I want time with my children. One just turned four and one will be two in a few weeks. So, this is all they know mommy as, and if I can just get a few good years with them, that's what I want. [Participant 6]

Well, my oncologist, she's been with me since the beginning of my stage two, so she actually was the one who recommended the trial. And she's, like, look let's try this out first and she's, like, I've seen good… I've seen it work on some patients and others not. She's, like, let's give this a try and so, luckily, thank God it's been working on me. [Participant 5]

Well for one thing I just wanted to take, like, the most aggressive approach that I could take, so I was, like, kind of looking at clinical trials from the moment I was diagnosed with metastatic disease. Because I know that is like the forefront of treatment and I really wanted to be aggressive. [Participant 16]

Purpose and content of study-related questionnaires

I knew there were going to be questionnaires. I don't feel like they were explained. I feel like they were pretty self-explanatory themselves. If I had questions, there was always somebody available that I could reach out to. [Participant 13]

So, when I went in, one of their representatives actually sat and walked me through the entire process, made sure I was comfortable. Sort of reassured me about everything and there were a lot of different forms and consent forms that I was also supposed to fill out. [Participant 12]

I mean, we know it was research, like when they told us about it, there was a large population of who… of how many people… or how many participants were in it and why they were gathering research, to help and for that data, and specifically look and analyze the side effects and cost versus benefit, and how certain other meds can help, and how the process, and help get educated on by your doctors [Participant 1]