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Table 2 Key excerpts for identified categories and subcategories of data

From: Nothing to lose: a grounded theory study of patients’ and healthcare professionals’ perspectives of being involved in the consent process for oncology trials with non-curative intent

Category/ subcategory Excerpt (patient participants are italicized)
(core category)
I didn’t want to say too much. I told them (family) I’m going on a drug trial. But that’s where it stops. I said, “They offered me a drug trial. I have nothing to lose.” And they says, “Well that’s all right, go ahead, do what you need to do.” (P06)
‘I’m not gonna commit to 2 years of the rest of my life to that.’ (P07 – trail decliner)
‘I think if people didn’t think, or didn’t hope that they would get life extension, no matter how well we brief them, I doubt they would actually take part in Phase I trials.’ (HcP01)
1.a Just want to live
‘When it comes to dying or anything there’s no way, like my own view is I’m too miserable to die. I’ve too much to do and I’ve a whole lot of things more that I haven’t had any time for dying.’ (P10)
1.b Maintaining hope
‘We ourselves are going to be hopeful that it is [the trial] going to bring some benefit. Even for Phase I studies, it is highly unlikely that you would be in a situation and caring for somebody and just thinking know, you do feel that there is a possibility of individual benefit. You want that to work for them. We are delivering this in a caring therapeutic setting.’ (HcP18)
“It’s all mind games in this disease, it feels like he is a friend in a sense because he is the one who is going to treat me for this disease … he’s the one that is working to make things better for me.” (P01)
‘We didn’t know really whether it would be a good or bad thing. We just wanted to talk to [GP] - somebody with more experience about it.’ (P03 - trail decliner)
‘I know that it is sometimes a scary position to be in, to be the trusted doctor, especially if you have been looking after them for a number of years, they will do anything you ask them.’ (HcP10)
2.a Feel lucky
‘She [clinical research nurse] says, “You will be coming up more often”, which is what I want. I want to get a bit more attention. “You’ll be treated like a VIP” she says. I went, “That’s fine.” (P06)
2.b Personalised Care
‘My view is that the best quality care that I can provide for a patient is through consideration for clinical trials. They drive high quality care. They may not provide the answer but in the process of doing it, they provide a very strong methodological framework to carry out high quality clinical care. So my commitment to patients is to carry out the best care I possibly can.’ (HcP06)
‘Now it’s just a matter of ‘here we go again’. It’s just the circle of life. It’s part of my life and cancer is a big part of my life. But dying is not part of my life... So, fighting the cancer is just what I have to do.’ (P15)
“These patients would grab anything to fight this disease.” (HcP02)
3a.Self concern
‘Well I am being totally selfish in my trial... Because the part of the trial that might help people in the future, I don’t really care at this stage, I just want to live myself. I’m not in a situation to start thinking about other people’s cures in the future. I need my own treatment now.’ (P14)
3b. Altruistic Motivation
‘Most people still ultimately – they may tell themselves they are only doing it for altruistic reasons, but I think ultimately most people are doing it because they think it is the best thing for them. But the altruism still weighs very, very highly for them. I think there are a few individuals who just say, “Well I’ve got two options. I can have treatment, or I can have treatment which is going to help other people more, so I am going to do that.” (HcP06)
  1. Table legend: P = patient; HcP = healthcare professional. Patient participant responses are italicized