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KeepnAI | FAP | Patient and Family Support App Survey

Living with FAP often means more than check-ups and surgery. It can mean learning to live with a changed digestive system, new eating habits, frequent bathroom trips, low energy, and a lifetime of scopes and appointments, and in many families, more than one person is affected.

Practical, everyday adjustments to food, fluids, daily routines and medication timing may help some people manage these challenges, but most people with FAP don’t have simple, personalized day-to-day tools to help them do that.

That’s what we’re building at KeepnAI: a friendly, easy-to-use AI app designed to give people personalized, day-to-day guidance on nutrition, hydration, lifestyle and medication routines, working alongside, not instead of, their healthcare team.

To build something that truly fits the needs of people living with FAP, we want to hear from you first. We would like to learn about your experiences, the support you currently receive, and what kinds of additional support, if any, would be useful to you.

Are you a parent or guardian answering for a child under 18? Please answer each question about your child’s experience. Wherever a question says “you”, read it as “your child”.

This survey should take approximately 5–8 minutes. Participation is voluntary. You may skip sensitive questions where an option to do so is provided.

Please do not include your name or other identifying information in your answers. Your responses will be used to inform product research and development. This survey is for research into support needs and is not intended to provide medical advice or replace your healthcare team. If you are experiencing new, severe, or concerning symptoms, contact your healthcare professional or seek urgent care as appropriate.

If you’d like, you can choose to be among the first to try the app when it is launched -completely free. You may provide contact details in a separate, optional form at the end. Your contact details will not be linked to your survey responses.

Thank you for your time, and for sharing your experience with us.

1. What is your age range?

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1a. For parents: How old is your child?

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2. In which country or region do you currently live?

3. Which diagnosis best describes your condition?

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4. Which best describes your current situation regarding bowel (colon) surgery?
This helps us show you the questions most relevant to you.

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5. How long ago was your most recent major bowel surgery?

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6. Which other FAP-related conditions or procedures apply to you? Select all that apply.

7. Which medications or supplements are you taking now, or have you taken, in relation to FAP or its effects? Select all that apply.

8. Are you currently taking any medication or supplement every day, long-term, because of FAP or its effects?

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9. In the past few months, which symptoms or side effects have you experienced? Select all that apply.

10. Which of these have been most difficult for you? select up to four

11. Overall, how much have symptoms or side effects interfered with your everyday life in the past few months?
0 = Not at all ····· 10 = Extremely

12. Which areas of your life are affected by FAP or its treatment? Select all that apply.

13. If you take (or have taken) long-term medication or supplements for FAP or its effects, which challenges have you experienced? Select all that apply.

14. In the past few months, have you faced any of these food, drink or nutrition challenges? Select all that apply.

15. Which of these have you tried, to manage symptoms through eating or drinking? Select all that apply.

16. How confident do you feel about knowing what to eat and drink, and when, to manage your FAP-related symptoms?

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17. Which aspects of managing FAP at home are challenging for you? Select all that apply.

18. In the past few months, what have you done to manage symptoms or FAP-related challenges? Select all that apply.

19. Overall, how helpful have the strategies you tried been?

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20. In the past few months, was there a time when you wanted more help managing symptoms, eating and drinking, medication routines or daily life?

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21. Have side effects or other burdens ever led you to delay, skip, reduce, pause or stop a recommended FAP medication, supplement or surveillance procedure - or seriously consider doing so? Select all that apply.

21a. If so, what were the main reasons? Select all that apply (otherwise select not relevant).

22. Have you been able to access a dietitian or nutrition professional with experience in FAP, J-pouches or ostomies?

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23. Which types of support would be most useful to you? Select up to four.

24. What would make you more comfortable using a digital support tool? Select all that apply.

25. What is the biggest challenge you face in managing FAP or its effects in everyday life?
Please don’t include names or identifying details.

KeepnAI is exploring a digital platform that could offer practical support between appointments, such as personalized daily guidance on food and hydration, medication and supplement routines timing, tracking of symptoms and bowel patterns, reminders for surveillance appointments, and help identifying when to contact a healthcare professional. The goal would be to complement, not replace, your healthcare team. No specific health benefit is guaranteed, and any medical or medication-related guidance would need appropriate safety review.

26. How interested would you be in trying a tool like this if it were available?

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27. Which factors would most influence whether you used it? Select up to four.

28. If a tool like this were available, how much would you personally be willing to pay per month for using it? (Our goal is for your health insurance provider to cover the cost of this app in the future, so you can use it free of charge. However, if insurance coverage is not available, would you be willing to pay for this type of support? If so, how much would you be willing to pay per month?)

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Optional beta participation

If you would like to be considered for free beta testing when KeepnAI becomes available, please use This Link to a separate contact form.

To preserve the anonymity of this survey, do not enter your name, email address, or phone number here. The separate form should explain how contact details will be used and should not collect or link back to your survey answers.