Table 7 Reason for item removal for PREM-ECM-Carer

1

I was able to provide support with my friend/family member’s decision to participate or not in the trial

X

X

2

My preference was that my friend/family member takes part in the trial

X

17

I feel the research team gave us all the information they could about the side effects

X

X

25

I feel the research team is very supportive

X

32

Due to the trial I have not needed to reduce/change my work/ study/ leisure activities

X

X

3

I was able to express my viewpoint on my friend/family member’s decision to participate or not

X

4

I am involved as much as I want to be with the decision to take part in the trial or not

X

5

My friend/family member and I had enough time to think about taking part in the trial

X

6

My friend/family member and I did not feel under any pressure to take part in the trial

X

7

My friend/family member and I were informed about what would be involved in trial participation

X

8

I felt that there were alternative options

X

10

The research team explained why my friend/family member could go on the trial

X

11

It was not made clear that the clinical trial may not benefit my friend/family member

X

15

I find the uncertainty around clinical trials difficult to cope with

X

20

There is not enough support…. experiences side effect/reactions

X

21

The care my friend/family member on the trial has received is personalised

X

22

Patient and I were not offered any support

X

24

feel my friend/family member on the trial has not had much support

X

27

I do not know who to contact if I need psychological/physical/financial support

X

28

My friend/family member’s participation in the trial has been a burden for me

X

31

The trial stops me from doing all my usual activities

X

34

I would not recommend others to go on a clinical trial

X