Table 3 Combined Scale for Proxy Informed Consent Decisions (CONCORD scale)

 1

I am informed about the purpose of the study, any procedures, risks and benefits

 2

I have been informed about my role in making the decision about my relative taking part in the study

 3

I am able to represent my relative’s wishes and preferences

 4

I am clear about which benefits from taking part (for them or others) would matter most to my relative

 5

I am clear about which disadvantages of taking part would matter most to my relative

 6

I am clear whether the benefits or disadvantages of taking part would be more important to my relative

 7

I recognise that a decision about my relative taking part in the study needs to be made

 8

I understand the information that I need in order to make a decision

 9

I understand that the decision about taking part in the study depends on what would matter most to my relative

 10

I feel that I am adequately informed about the issues that are important to my relative

 11

I feel able to ask the research team any questions I have about the study

 12

I feel able to express my opinions about my relative taking part in the study or not

 13

I feel as involved as I want to be in the decision

 14

I feel that the information about the study prepared me to make a decision

 15

I feel confident that I can understand the information well enough to make a decision

 16

I have given the decision about whether my relative takes part or not consideration and thought

 17

I am clear about what my relative’s wishes and preferences would be about taking part in the study

 18

I feel supported to make a decision about the study

 19

I am confident that I can make a decision about the study

 20

I feel confident that I can delay my decision if I need more time

 21

I am ready to make a decision about the study

 22

I am satisfied with my decision

 23

I am satisfied that my decision would be consistent with my relative’s values

 24

I feel it is the right decision

 25

I feel the decision was a wise one

 26

I feel I had enough time to make a decision

 27

I am comfortable with the decision

 28

I feel that the decision process was good (regardless of the outcome)