Supplemental Data: Usability Questionnaire and Knowledge Questionnaire

Journal:Journal of Genetic Counselling

Title: DECIDE: a decision support tool to facilitate parents’ choices regarding genome-wide sequencing

Authors: Birch PH1, Adam S1, Bansback N2, Coe RR1, Hicklin J2, Lehman A, Li KC1, Friedman JM1

Corresponding Author:

Patricia Birch, University of British Columbia , Department of Medical Genetics

Tel: 604-875-2000 ext 5622

Fax: 604-875-3019

Email:

Evaluation of DECIDE – done by telephone interview

Study ID#______Date:______

Please provide us your feedback so that we can improve DECIDE for other families.

1 = Strongly disagree, 2 = Disagree, 3=Neither agree nor disagree, 4 = Agree, 5 = Strongly agree

  1. How long do you think you spent on DECIDE?______
  1. It was easy to navigate the website 1 2 3 4 5
  1. The following information is easy to understand:

A)Videos and cartoon clips1 2 3 4 5

B)Written information1 2 3 4 5

C)Graphics and illustrations1 2 3 4 5

  1. The following information is useful:

A)Videos and cartoon clips1 2 3 4 5

B)Written information1 2 3 4 5

C)Graphics and illustrations1 2 3 4 5

  1. The website uses common, easy to understand language

1 2 3 4 5

  1. The medical terms are defined clearly1 2 3 4 5
  1. The organization of the information is clear1 2 3 4 5
  1. Information is missing from the website

1 2 3 4 5

(if applic.), what is missing______

  1. It was easy to change my choices I wanted to1 2 3 4 5
  1. If I made a mistake, it could be fixed easily and quickly1 2 3 4 5
  1. Overall, I would have been satisfied to use DECIDE to make

my decision about the sequencing test1 2 3 4 5

  1. I would recommend DECIDE to other families in my situation1 2 3 4 5
  1. I would have preferred to receive information about the sequencing

test by talking to a health professional rather than by DECIDE1 2 3 4 5

A)a health professional in your community1 2 3 4 5

B)a health professional at Children’s Hospital in Vancouver1 2 3 4 5

  1. Are there circumstances where one or the other would be better?

______

  1. Was the concept behind the pie chart easy to follow?

Yes No ______

  1. When it asked you to pick 4 issues (values) did you understand what you had to do? Were you okay with picking just 4?

______

  1. Were there other issues you would have thrown into the list of 10, if so, what were there?

______

  1. How easy for you was the section where you had to rank or rate the relative importance of each issue?

______

  1. I know that you have already decided on genomic testing but did the results of DECIDE (the choice it made for you) make sense to you?

Yes No Why? ______

  1. Did you learn anything new?

Yes No If yes, what? ______

  1. Did you show DECIDE to anyone else?

Yes No

If yes, who? ______

  1. If not, would you have wanted to show it to anyone else?

______

  1. Comments

______

______

Thank you!

Knowledge Questionnaire

Please answer the questions below to the best of your knowledge. We do not expect you to know ALL the answers 

1)DNA contains the instructions for all our traits such as hair colour and blood type.

a)True

b) False

c) I don’t know

2)All changes in our DNA that are different from “normal” will result in a disease.

a)True

b)False

c)I don’t know

3)Results from genome-wide sequencing are black and white: Some people get a diagnosis and some people don’t.

a)True

b) False

c) I don’t know

4)Having the parents’ DNA usually helps in the analysis of the testing results.

a)True

b)False

c) I don’t know

5)A person who has genome-wide sequencing will definitely learn the cause of his/her condition.

a)True

b)False

c)I don’t know

6)Our family is obliged to have (has to have) genome-wide sequencing.

a)True

b)False

c)I don’t know

7)The process of genome-wide sequencing may identify genetic changes not related to the reason for the initial testing.

a)True

b)False

c)I don’t know

8)Genome-wide sequencing carries some risks such as a possible loss of privacy.

a)True

b)False

c)I don’t know

9)Genome-wide sequencing never gives information that affects other family members.

a)True

b)False

c)I don’t know

10)In Canada it is illegal to discriminate against people for genetic reasons.

a)True

b)False

c)I don’t know

11)Genomic variants are defined as changes in the genetic material or DNA that cause disease.

a)True

b)False

c)I don’t know

12)Incidental findings in genomic testing are changes that are found through the test that are the cause of your child’s condition.

a)True

b)False

c)I don’t know

13)Whole exome sequencing looks at every bit of our genetic material.

a)True

b)False

c)I don’t know