Fragile X Clinic Evaluations Question Title * 1. Did you visit a clinic in person or online (also known as video/telehealth/telemedicine)? In person Online Comment: Question Title * 2. Name of Fragile X clinic Ann Arbor, MI: University of Michigan Hospitals and Clinics Atlanta, GA: Emory University Baltimore, MD: Kennedy Krieger Institute Boston, MA: Children's Hospital Boston Chicago, IL: Rush University Medical Center Cincinnati, OH: Fragile X Research and Treatment Center Cleveland, OH: MetroHealth Medical Center Dallas, TX: Univ. of Texas Southwestern School of Medicine Denver, CO: Children's Hospital Colorado Durham, NC: Duke University Medical Center Greenwood, SC: Greenwood Genetic Center Houston, TX: Texas Children’s Hospital Iowa City, IA: University of Iowa Children's Hospital Kansas City, KS: University of Kansas Medical Center Long Beach, CA: Miller Children's Hospital Lewisburg, PA: Geisinger Fragile X Center Louisville, KY: Weisskopf Evaluation Center Madison, WI: University of Wisconsin School of Medicine Miami, FL: Mailman Center for Child Development Minneapolis, MN: University of Minnesota Morristown, NJ: Fragile X Center at Atlantic Health System Nashville, TN: Vanderbilt University Medical Center New Orleans, LA: Boh Center for Child Development New York City, NY: Seaver Autism Center for Research and Treatment at Mount Sinai Philadelphia, PA (area): Elwyn Center Phoenix, AZ: Phoenix Children’s Hospital Pittsburgh: PA: Children's Hospital of Pittsburgh Sacramento, CA: U.C. Davis M.I.N.D. Institute Stanford, CA: Stanford University Staten Island, NY: NY State Institute for Basic Research St. Louis, MO: Washington University Medical Center Stratford, NJ: Rowan University Washington, DC: Children's National Medical Center Worcester, MA: University of Massachusetts Medical School/Memorial Health Care Question Title * 3. Is this your closest clinic geographically? Yes No Question Title * 4. If No, please explain why you chose the clinic for this visit: Question Title * 5. Date of Visit (Please estimate day if you cannot remember) Enter date Date Question Title * 6. How many people did you bring to this visit as patients?*If you brought more than one child to the visit AND the experience you had was different with each child, please use the Comment box at the end of each question to describe the differences.* 1 2 3 4 Comment: Question Title * 7. Diagnosis of persons being seen (Please check all that apply): Fragile X syndrome Fragile X-associated tremor/ataxia syndrome Fragile X-associated primary ovarian insufficiency Other premutation concerns Other (please specify) Question Title * 8. Age of person(s) being seen, in years Person 1 Person 2 Person 3 Person 4 Ages 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 Ages Person 1 menu 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 Ages Person 2 menu 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 Ages Person 3 menu 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 Ages Person 4 menu Question Title * 9. Gender(s) Person 1 Person 2 Person 3 Person 4 Please select: M F Please select: Person 1 menu M F Please select: Person 2 menu M F Please select: Person 3 menu M F Please select: Person 4 menu Question Title * 10. Reasons for this visit (Check all that apply) Newly-diagnosed Developmental evaluation Genetic counseling Concerns about behavior and/or medications Routine follow-up, including medications Fragile X related health problems Clinical trial visit Developmental therapies (speech, physical, occupational, etc) Other premutation carrier issues Comment: Please indicate how well you think this clinic did in the following areas: Question Title * 11. Ease of Getting Care: Excellent Very Good Good Fair Poor N/A Ability/ease to get an appointment Ability/ease to get an appointment Excellent Ability/ease to get an appointment Very Good Ability/ease to get an appointment Good Ability/ease to get an appointment Fair Ability/ease to get an appointment Poor Ability/ease to get an appointment N/A Hours the clinic is open Hours the clinic is open Excellent Hours the clinic is open Very Good Hours the clinic is open Good Hours the clinic is open Fair Hours the clinic is open Poor Hours the clinic is open N/A Prompt return on calls Prompt return on calls Excellent Prompt return on calls Very Good Prompt return on calls Good Prompt return on calls Fair Prompt return on calls Poor Prompt return on calls N/A Comment: Question Title * 12. Clinic Coordinator and office personnel Excellent Very Good Good Fair Poor Effectively described what to expect during the visit Effectively described what to expect during the visit Excellent Effectively described what to expect during the visit Very Good Effectively described what to expect during the visit Good Effectively described what to expect during the visit Fair Effectively described what to expect during the visit Poor Friendly and helpful to you Friendly and helpful to you Excellent Friendly and helpful to you Very Good Friendly and helpful to you Good Friendly and helpful to you Fair Friendly and helpful to you Poor Answered your questions satisfactorily Answered your questions satisfactorily Excellent Answered your questions satisfactorily Very Good Answered your questions satisfactorily Good Answered your questions satisfactorily Fair Answered your questions satisfactorily Poor Comment: Question Title * 13. Waiting: Excellent Very Good Good Fair Poor Time in waiting room/waiting for doctor Time in waiting room/waiting for doctor Excellent Time in waiting room/waiting for doctor Very Good Time in waiting room/waiting for doctor Good Time in waiting room/waiting for doctor Fair Time in waiting room/waiting for doctor Poor Time in exam room/with doctor online Time in exam room/with doctor online Excellent Time in exam room/with doctor online Very Good Time in exam room/with doctor online Good Time in exam room/with doctor online Fair Time in exam room/with doctor online Poor Time to get clinic report Time to get clinic report Excellent Time to get clinic report Very Good Time to get clinic report Good Time to get clinic report Fair Time to get clinic report Poor Comment: Question Title * 14. Staff: The providers seen during your visit... Excellent Very Good Good Fair Poor Listened to you Listened to you Excellent Listened to you Very Good Listened to you Good Listened to you Fair Listened to you Poor Took enough time with you Took enough time with you Excellent Took enough time with you Very Good Took enough time with you Good Took enough time with you Fair Took enough time with you Poor Explained what you want to know Explained what you want to know Excellent Explained what you want to know Very Good Explained what you want to know Good Explained what you want to know Fair Explained what you want to know Poor Gave you good advice on treatment Gave you good advice on treatment Excellent Gave you good advice on treatment Very Good Gave you good advice on treatment Good Gave you good advice on treatment Fair Gave you good advice on treatment Poor Used understandable language Used understandable language Excellent Used understandable language Very Good Used understandable language Good Used understandable language Fair Used understandable language Poor Referred you to specific providers if follow-up or another opinion is needed Referred you to specific providers if follow-up or another opinion is needed Excellent Referred you to specific providers if follow-up or another opinion is needed Very Good Referred you to specific providers if follow-up or another opinion is needed Good Referred you to specific providers if follow-up or another opinion is needed Fair Referred you to specific providers if follow-up or another opinion is needed Poor Comment: Question Title * 15. Facility: Excellent Very Good Good Fair Poor N/A Neat and clean building Neat and clean building Excellent Neat and clean building Very Good Neat and clean building Good Neat and clean building Fair Neat and clean building Poor Neat and clean building N/A Ease of finding where to go Ease of finding where to go Excellent Ease of finding where to go Very Good Ease of finding where to go Good Ease of finding where to go Fair Ease of finding where to go Poor Ease of finding where to go N/A Comfortable and child-friendly waiting room Comfortable and child-friendly waiting room Excellent Comfortable and child-friendly waiting room Very Good Comfortable and child-friendly waiting room Good Comfortable and child-friendly waiting room Fair Comfortable and child-friendly waiting room Poor Comfortable and child-friendly waiting room N/A Clinic area and waiting room FX friendly Clinic area and waiting room FX friendly Excellent Clinic area and waiting room FX friendly Very Good Clinic area and waiting room FX friendly Good Clinic area and waiting room FX friendly Fair Clinic area and waiting room FX friendly Poor Clinic area and waiting room FX friendly N/A Comment: Question Title * 16. Would you return to/use this clinic for future services? Yes No Not sure Comment: Question Title * 17. Would you recommend this clinic to others? Yes No Not Sure Comment: Question Title * 18. If not a native English speaker, were you and the clinic able to effectively communicate with each other? Yes No Comment: Question Title * 19. Did you utilize funds from the Fly with Me fund for your visit? (If yes, please comment on how this helped you) Yes No Comment: Question Title * 20. What do you like best about this clinic? Question Title * 21. What do you like least about this clinic? Question Title * 22. Suggestions for improvement? Question Title * 23. If your clinic visit was online, instead of in-person, how would you compare the two? Our online visit was: More helpful than an in-person visit About the same as an in-person visit Less helpful than an in-person visit N/A (We’ve never had an in-person visit) Comment: Question Title * 24. Going forward what would work best for you: Would prefer to go back to all in-person visits Would like to do some in-person, some online Would prefer to do as much online as possible Comment: Question Title * 25. Other comments: Question Title * 26. (OPTIONAL) If you would like to be contacted please provide info below. The NFXF will not identify anyone by name when providing feedback to a clinic about their services. Name Email Done
