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Table 2 Quotes related to perceptions surrounding remaining enrolled in clinical trial

From: Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial

Theme

Selected quotes

Past Experiences with Care

But the fact that you people have done such a good job that’s one of the reasons that I’m here spending time with you for your study. (Time 3, 66 year old male, pseudomyxoma)

I have no doubts that I would not do that (refers to stay enrolled in trial) just because I’m very pleased with the care that I’m getting and appreciative that I am going to be followed closely for five years. (Time 3, 49 year old, female, mucinous adenocarcinoma)

Self-Identified Personal Characteristics and Reasons for Participation

- I offered Dr. L the opportunity and said if you give me your report on the phase two I’ll read it for mathematical accuracy and comments and won’t charge you a nickel for it because I’m just grateful for everything that was done and anything that I can do to help out with some of these related studies I’d be happy to. (Time 2, 66 year old, male, pseudomyxoma)

- I’m highly motivated to do the protocol so probably even if the pain teams weren’t involved I would be pretty motivated to complete it. (Time 2, 50 year old, female, melanoma)

-I have a strong will but I feel their support (Time 2, 49 year old, female, adenocarcinoma)- I will complete what I started. (Time 2, 44 year old, male, melanoma)

Quality of the Cancer Clinical Trial Team and Palliative Care Team Partnership

- And that if anything should happen, that I would need more surgery or anything, that I know first of all I would be getting first rate medical care and then care as far as emotionally. (Time 3, 49 year old, female, mucinous adenocarcinoma)

- Absolutely will help people on study- someone needs to help people understand what’s going on. At home we have to call the doctor, get the nurse, then wait to hear back. I don’t think that is right. With one person to call I feel they know me and we will be able to talk about me and get a good answer to my question. (Time 2, 37 year old, male, melanoma)

- Definitely helps having, getting that partnership together. I can’t say that I would, my treatment wouldn’t be the same without them but it definitely helps having them. (Time 3, 37 year old, male, pseudomyxoma)

- Oh, more likely, you got to be insane to do this without it, I would be crazy patient. (Time 3, 44 year old, male, melanoma)

-Make it easier to complete tough parts of the protocol. (Time 3, 37 year old, male, melanoma)

 

-Absolutely more likely. Whatever they want me to do, whatever they suggest is what I’ll be glad to do. (Time 3, 52 year old, male, melanoma)