We would like to know what YOU think!

The FPIES Foundation is collaborating with clinicians and researchers and families/patients affected by FPIES. We are looking for feedback from patients/families to further define future initiatives to improve care, research and support in this area. Your responses are anonymous and kept confidential. It should take 10-15 min to complete.
For details regarding this survey, please review our website Survey page
For questions, please contact us at contact@thefpiesfoundation.org 
Introduction:

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* 2. What is your age?

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* 3. What is your gender?

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* 4. What is the highest level of school that you have completed?

Priorities in FPIES:
For the following questions (Q5-24), please rate from 1 (not essential) to 9 (absolutely essential) how essential you feel each of the following ideas is to you:

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* 5. A diagnostic test for FPIES (e.g. in blood, saliva or stool) to be able to identify FPIES during acute reactions in the emergency room and help differentiate it from other conditions like stomach bugs or food poisoning

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* 6. A ‘prognostic/predictive test’ to know when FPIES to a particular food has resolved, to know if your child could safely eat the food that has been a problem before.

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* 7. A test that could identify safe and/or trigger foods to help introduce new foods safely and timely in children with FPIES.

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* 8. Better knowledge about FPIES among healthcare professionals’ (primary care, general pediatricians, emergency room staff, etc) to avoid delay in diagnosis at onset of symptoms.

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* 9. Better education about FPIES among medical students during their training to increase awareness and avoid delay in diagnosis at onset of symptoms.

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* 10. An established plan for continuity of care following Emergency Room visits for FPIES reactions to ensure follow up care with appropriate providers/specialists to help the patient and his/her family manage the diagnosis.

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* 11. Better knowledge about FPIES in the community (e.g. school staff, relatives, friends) to help patients and families in their daily lives.

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* 12. A list of specialized centers with expertise in FPIES available for patients and healthcare professionals to facilitate referrals.

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* 13. Better/easier access to food challenges under medical supervision in centers with expertise in FPIES.

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* 14. Uniform guidelines for food challenges to ensure safety and accuracy of outcomes and follow up care.

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* 15. Better/easier access at diagnosis, and follow up care after diagnosis, to a Dietitian.

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* 16. Better/easier access at diagnosis, and follow up care after diagnosis, to a Psychologist.

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* 17. Access to programs to connect experienced families with new families for peer support.

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* 18. Access to an expert to ask questions (e.g. webinar, open Q&A, etc) about FPIES through the FPIES Foundation.

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* 19. Further development of initiatives to help with psychological struggles of living with FPIES.

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* 20. Access to a patients'/families’ online forum on FPIES through the FPIES Foundation, moderated by parents knowledgeable about FPIES.

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* 21. Additional research bringing more light to the struggles (psychological, financial, practical) of living with FPIES.

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* 22. Initiatives to connect families with resources to help with navigating the financial struggles of living with FPIES.

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* 23. Increased resources specifically aimed/targeted at school-age children.

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* 24. Additional research on the effects of living with FPIES (including day-to-day, food avoidance/diet restriction doctor visits, food challenges, etc.) for school-age children.

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* 25. Please let us know in the comment box below any other issues or needs you think clinicians and researchers should focus on to help people living with FPIES and their families.

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* 26. Please choose if you are: 

 
25% of survey complete.

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