Fragile X Clinic Evaluation Question Title * 1. 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: Cleveland Clinic Foundation Dallas, TX: Univ. of Texas Southwestern School of Medicine Denver, CO: Children's Hospital of Denver Durham, NC: Duke University Medical Center Houston, TX: Texas Children’s Hospital Iowa City, IA: University of Iowa Hospitals and Clinics Indianapolis, IN: Satellite to Cincinatti, OH Clinic Kansas City, KS: University of Kansas Medical Center Long Beach, CA: Miller Children's Hospital Louisville, KY: Weisskopf Evaluation Center Miami, FL: Mailman Center for Child Development Minneapolis, MN: University of Minnesota Nashville, TN: Vanderbilt Center for Child Development Palo Alto, CA: Stanford University Philadelphia, PA (area): Elwyn Center Phoenix, AZ: Phoenix Children’s Hospital Pittsburgh: PA: Children's Hospital of Pittsburgh Providence, RI: Brown University Medical Center Sacramento, CA: U.C. Davis M.I.N.D. Institute Seattle, WA: Children's Hospital and Regional Medical Center Staten Island, NY: NY State Institute for Basic Research Question Title * 2. Is this your closest clinic geographically? Yes No Question Title * 3. If No, please explain why you chose the clinic you are currently attending: Question Title * 4. Month and Year of Visit Question Title * 5. Diagnosis of person(s) being seen (Please check all that apply): Fragile X syndrome Fragile X-associated tremor/ataxia syndrome Fragile X-associated primary ovarian insufficiency Other (please specify) Question Title * 6. Age of person(s) being seen Question Title * 7. Gender(s) Question Title * 8. 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 (please specify) Please indicate how well you think this clinic did in the following areas: Question Title * 9. Ease of Getting Care: Excellent Very Good Good Fair Poor N/A Ability to get an appointment Ability to get an appointment Excellent Ability to get an appointment Very Good Ability to get an appointment Good Ability to get an appointment Fair Ability to get an appointment Poor Ability to get an appointment N/A Hours clinic is open Hours clinic is open Excellent Hours clinic is open Very Good Hours clinic is open Good Hours clinic is open Fair Hours clinic is open Poor Hours 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 Question Title * 10. Clinic Coordinator and office 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 Comments Question Title * 11. Waiting: Excellent Very Good Good Fair Poor Time in waiting room Time in waiting room Excellent Time in waiting room Very Good Time in waiting room Good Time in waiting room Fair Time in waiting room Poor Time in exam room Time in exam room Excellent Time in exam room Very Good Time in exam room Good Time in exam room Fair Time in exam room 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 Question Title * 12. 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 Comments Question Title * 13. Facility: Excellent Very Good Good Fair Poor 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 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 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 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 Comments Question Title * 14. Would you return to this clinic for services? Yes No Not sure Question Title * 15. Would you recommend this clinic to others? Yes No Not Sure Question Title * 16. If not a native English speaker, were you and the clinic able to effectively communicate with each other? Yes No Question Title * 17. What do you like best about this clinic? Question Title * 18. What do you like least about this clinic? Question Title * 19. Suggestions for improvement? Question Title * 20. Other comments: Done
