Community Needs Survey 2017

Currently, Georgia PKU Connect is conducting a survey for all inherited metabolic conditions (e.g. PKU, VLCAD, MSUD, etc.).  If you or your child has an inherited metabolic condition, we would like your feedback about living with this experience.  Our hope is to use this information to create more support and resources for Georgian families.  

All responses will be held confidential – no names or other identifying information will be collected - and used only for the purpose of decision making by Georgia PKU Connect.  Results will be shared in a summarized format with Emory Clinic to coordinate resources promoting a community support network.  Your assistance by completing this survey is greatly appreciated. 

Georgia PKU Connect is a non-profit organization dedicated to connecting individuals with PKU to the resources they need to manage their condition.  

* 1. I am filling out this survey for:

* 2. In what region is your home located in proximity to the Emory Genetics Clinic in Atlanta?

* 3. What is the year of birth of the individual with the metabolic condition (YYYY)?

* 4. What is the gender of the individual with the metabolic condition?

* 5. Please check your current Clinic:

* 6. Do you know how to contact a Registered Dietitian (as the patient or caregiver) at your clinic?

* 7. Do you know how to contact your metabolic doctor?

* 8. If it has been more than 1 year since your last clinic visit, check ALL reasons why:

* 9. If you mail in filter paper, are your current lab services satisfactory?

* 10. How would you describe your blood work experience during a clinic visit?

* 11. If PKU - what is the current status of your PKU Treatment

* 12. For all metabolic conditions, if NOT following a diet treatment plan, please check ALL reasons applicable:

* 13. If for any reason you could NOT get coverage for medical formula, would you know how to access temporary assistance?

* 14. Do you purchase any other medical foods in addition to formula?

* 15. If NO, check all reasons why not:

* 16. How do you currently stay informed about your prescribed diet (check all that apply)?

* 17. Which of the following could best support successful diet management?  Please rate how important each of these items are on a scale of 1 - 5 (1 being very important and 5 not so important).

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Individual Counseling
Group Therapy for emotional support
Stress Management classes
Condition specific educational seminars
Workshops helping families navigate Insurance
Workshops teaching skills on how to advocate for yourself
Cooking Classes

* 18. How would you prefer connecting with others to support diet (rank in order with 1 being the most preferred)?

* 19. Are you familiar with the Emory MNT4P (Medical Nutrition Therapy for Prevention) program?

* 20. What diet support related subjects are of interest to you (check all that apply)?

* 21. Please add any additional comments that you feel would help improve your success for staying on diet: