1. Who first told you that there was a risk of bowel cancer in your family? Please tick one: □ Your doctor (General Practitioner “GP”) □ Specialist doctor (e.g., surgeon, gastroenterologist, oncologist, etc.) □ Genetics specialist (e.g., medical doctor or genetic counsellor) □ Another healthcare professional □ Your relative, can you tell us who? (e.g., mother, brother, cousin?) Other person, please tell us who? (e.g., friend or charity advisor?) □ Can’t remember Please answer the next questions (2, 3 & 4) only if you were told about the increased risk by a healthcare professional 2. Did you feel well supported at that time? Yes/No/Not sure 3. Please give suggestions below if you think that this could have been done better? 4. Are you the first person in your family to be told that there is an increased risk of cancer in the family? Yes/No/Don’t know 5. Please can you tell us what written information you received when you were told about your risk of cancer? Tick all that apply □ None received □ General information about the condition □ Specific information about your family □ A copy of your family tree indicating who had cancer □ A copy of your family tree showing who could have bowel screening □ A ‘Dear Relative’ or ‘To Whom it May Concern’ letter to give to your relatives □ Other—Please give details 6. Did you get the information you wanted? □ None of what I wanted □ Some of what I wanted □ Most of what I wanted □ All of what I wanted 6a. If you didn’t get all the information you wanted at that time, what other information might have been helpful? Please tell us… 7. If you have found additional information about the shared risk of cancer in your family, who provided that information? Tick all that apply □ Your doctor, surgeon or other health professional □ Other relatives □ Friends □ Support group or charity meeting □ Internet website □ Social media □ Library 8. If you found out more information via the Internet, what websites or social media were particularly helpful? Please give details below: 9. Would you like to receive information in other ways? Yes/No/Don’t know If yes, would this be □ Via a website □ By Email □ Social media □ In a follow-up appointment □ Other—Please state We would like to know if other forms of information for patients could make it easier to share information in the family. Below, we ask you to think about other ways that your doctor or genetic counsellor could give you information. Then please can you rate how helpful these might be to you and your relatives? 10. Please indicate how helpful you think this would be for the different ways of getting information by making a cross on each of the scales below: a. A paper leaflet which has general information about an increased risk of bowel cancer, the implications for relatives and the screening available? b. A secure email which has more specific information about your increased risk, the implications for your relatives and the screening advised? c. A password protected website which has more specific information about your increased risk, the implications for your relatives and the screening advised ? d. A follow-up appointment in the hospital clinic where you are given specific information about your increased risk, the implications for your relatives and the screening advised? e. A follow-up telephone call where you are given specific information about your increased risk, the implications for your relatives and the screening advised? 11. What issues would you like more information about? Please tick all that apply □ Talking to children □ Healthy lifestyle □ How can I help my relatives who live abroad □ How to find out more about genetic testing □ Other issues Please give us more details about any of the issues that concern you in the box below: 12. How many of your relatives are aware of the increased risk of cancer in the family? So, as far as you know □ All □ Most (please tick the one which applies) □ Some □ None □ I don’t know 13. If you have experienced any difficulties sharing information with your relatives about the increased risk can you tell us what those difficulties were? Please give details below, or pass on to the next question if there were no difficulties 14. Can you suggest ways in which your health professional could help you or your family more? Please give suggestions below.

Final page of the questionnaire was of demographic questions