Table 5 Meaningfulness of clinical trial–related questionnaires to participants and their understanding of PRO data
Participant quotes | |
|---|---|
Meaningfulness of study-related questionnaires | I think they did an excellent job. And the study I'm in now here at home, same thing with the questionnaires. I think they're doing a really good job in capturing a lot of the symptoms, and asking the good questions to figure out and try to pull some more information out of me that I don't remember day-to-day that had actually happened. [Participant 3] |
Meaningful not in a positive way, but I found myself very anxious and full of anxiety. I was uncertain and uneasy and a little aggressive; irritable. [Participant 18] | |
No. There's one question on there, for example, on mine that says, Do you feel like a woman? I'm like seriously, what does that mean? That is by far the worst question and it's a scale question. Not all, little bit, same kind of thing with very much, I'm like what? The last I checked that didn't change. [Participant 2] | |
I think electronic is a lot better. It's paper and pen and circling where, to be honest with you thinking back, pen and paper takes more energy for someone to circle and an electronic version is easier to just click, click, click… [Participant 15] | |
Use of PRO data | I understand that it's a clinical trial, and I wish people were more straightforward about these things. There may be some questions that you need to ask in a certain way because of how a trial is designed, but there can be a way that you ask questions that make the patient feel like you want to hear from me. [Participant 7] |
My way would be with meeting with the doctor, and I would like the doctor to be the person who is caring for me who has been with me since I was diagnosed. I don't want to have to change to a different doctor, different nurses. I would like it to remain the same… And you know, he knows me. He knows how I am. He knows my history. He can compare…the other people that see me don't know anything and that's why I feel like I'm a statistic…. [Participant 18] |