Guest guest Posted September 23, 2000 Report Share Posted September 23, 2000 Survey on Access to Pediatric Rheumatology Care The American Juvenile Arthritis Organization (AJAO) is a council of the Arthritis Foundation. The AJAO Task Force on the Future of Pediatric Rheumatology is conducting this survey to obtain current information concerning access to pediatric rheumatology care. Your healthcare experience is important! Please complete and return ONE survey PER FAMILY to: AJAO Survey, 1330 West Peachtree Street, Atlanta, GA 30309 1. Are you the parent or guardian of a child, or are you a young adult, diagnosed with arthritis or an arthritis-related disease before the age of eighteen? _____ No* __X__ Yes** *If NO, further information is not needed. Thank you for your participation. **If YES, please continue on to question 2. (Young adults please read " your child " as " you " , " your " or " yourself. " ) 2. What is the date of birth and sex of your child with arthritis or an arthritis-related disease? First child diagnosed (1)__3years__________ ______ Second child diagnosed (2)____________ ______ Third child diagnosed (3)____________ ______ 03/24 / 97 Sex F Month / Day / Year Sex Month / Day / Year Sex 3. At what age was your child diagnosed with arthritis or an arthritis-related disease? First child diagnosed (1)__3_____ Second child diagnosed** (2)_______ Third child diagnosed** (3)_______ AGE AGE AGE **IF YOU HAVE MORE THAN ONE CHILD WITH ARTHRITIS, PLEASE COMPLETE THE FOLLOWING QUESTIONS USING " 1 " FOR FIRST CHILD DIAGNOSED, " 2 " FOR SECOND CHILD DIAGNOSED, ETC. Otherwise, use a check mark to indicate answers. 4. How many years has your child been diagnosed? Diagnosis: (Child 1)_____________________________________ __X___ Less than one year _____ Three _____ One _____ Four (Child 2)_____________________________________ _____ Two _____ Five or more (Child 3)_____________________________________ 5. How many doctors did your child see before you received an accurate diagnosis? ___X__ One _____ Four _____ Two _____ Five or more _____ Three _____ No accurate diagnosis given (please skip to question 7) 6. What type of health care provider accurately diagnosed your child? _____ Adult rheumatologist _____ Orthopedic surgeon _____ Family practice doctor _____ Pediatrician _____ Nurse practitioner __X___ Pediatric rheumatologist _____ Other (please specify) ________________________________ 7. Which health care provider is primarily responsible for the day-to-day management of your child's arthritis or arthritis- related disease? (Check all appropriate responses.) _____ Adult rheumatologist _____ Orthopedic surgeon _____ Family practice doctor _____ Pediatrician _____ Nurse practitioner __X___ Pediatric rheumatologist _____ Other (please specify) ________________________________ 8. Has your child ever seen a pediatric rheumatologist? __X___ Yes (please skip to question 10) _____ No 9. If NO, why not? (After answering, please skip to question 21) _____ Was not referred _____ Did not know about a pediatric rheumatologist specialist _____ Insurance would not pay _____ Felt it was not necessary _____ Distance too far _____ Other (specify)_______________________________________ 10. If YES, by whom were you referred? _____ Adult rheumatologist _____ Orthopedic physician _____ Arthritis Foundation / AJAO ___X__ Pediatrician _____ Family practice physician _____ Other (specify)______________________________________ _____ Nurse practitioner 11. After the onset of symptoms, how long was it before your child was referred to the pediatric rheumatologist? __X___ 0 - 6 months _____ 2 - 4 years _____ 6 - 12 months _____ 5 or more years _____ 1 - 2 years 12. How long is your travel time one way to see this pediatric rheumatologist? __X___ Less than 30 minutes _____ 2 - 4 hours _____ 30 - 60 minutes _____ More than 4 hours _____ 1 - 2 hours 13. How far do you travel one way to see this pediatric rheumatologist? __X___ Less than 25 miles _____ 100 - 200 miles _____ 25 - 50 miles _____ More than 200 miles _____ 50 - 100 miles 14. Does your child currently see a pediatric rheumatologist? __X___ Yes _____ No (please skip to question 16) 15. If YES, where does your child see the pediatric rheumatologist? (After answering, please skip to question 17) ___X__ Doctor's office (private practice) _____ Outreach clinic _____ Hospital outpatient clinic _____ Other (specify)_______________________________________ 16. If NO, why not? (After answering, please skip to question 21) _____ Distance too far _____ Loss of income / travel expenses _____ Insurance will deny payment _____ Referral not given _____ Other (specify)________________________________________ 17. How often does your child see the pediatric rheumatologist? _____ Once a month _____ Every six months _____ Every other month _____ Once a year __X___ Every three to four months _____ Other (specify)______________________________ 18. In your opinion, does your child see the pediatric rheumatologist as often as needed? __X__ Yes (please skip to question 20) _____ No 19. If NO, why not? _____ Distance too far _____ Loss of income / travel expenses _____ Insurance will deny payment _____ Referral not given _____ Other (specify)________________________________________ 20. How many years has your child received care from a pediatric rheumatologist? __X___ Less than one year _____ Three _____ One _____ Four _____ Two _____ Five or more years 21. Since the initial onset of symptoms, has your child seen any other doctors? (Please check the additional space if this provider is a pediatric specialist.) pediatric specialist? pediatric specialist? _____ Allergist _____ __X___ Ophthalmologist _____ _____ Cardiologist _____ _____ Optometrist _____ _____ Dermatologist _____ _____ Orthodontist _____ _____ ENT _____ _____ Orthopedic surgeon _____ _____ Gastroenterologist _____ ___X__ Pediatrician _____ Hematologist _____ _____ Podiatrist _____ _____ Immunologist _____ _____ Pulmonologist _____ _____ Nephrologist _____ _____ Other (specify)_______________________________ _____ Neurologist _____ _____ None 22. Since the onset of symptoms, has your child seen any other health care providers? (Please check the additional space if this provider specializes in the area of pediatric rheumatology.) ped. rheu. specialist? ped. rheu. specialist? _____ Acupuncturist _____ __X___ Occupational Therapist _____ _____ Behavioral Psychologist _____ _____ Pain Management Specialist _____ _____ Dietician _____ __X___ Physical Therapist _____ _____ Massage Therapist _____ _____ Speech Therapist _____ _____ Nurse _____ _____ None _____ Nurse Practitioner _____ _____ Other (specify)_______________________________ 23. How satisfied are you with your child's medical care? __X___ Very satisfied _____ Unsatisfied _____ Satisfied _____ Very unsatisfied 24. Does your child have health insurance coverage? __X___ Yes _____ No (please skip to question 27) 25. If YES, what type of health insurance coverage does your child have? __X___ Traditional (fee for service) _____ HMO / managed care _____ Medicare/Medicaid _____ Other (please specify)_________________________________________ 26. Please check if your child's health insurance covers: *PT/OT is limited _____ Adaptive equipment / assistive devices __X___ Physical therapy (outpatient) ___X__ Occupational therapy (outpatient) _____ Prescription drug coverage _____ Orthotics _____ Splints _____ None of these are covered 27. Please estimate your yearly medical expenses (the part you pay, not the part paid by insurance) for your child's arthritis-related health care. _____ Under $500 _____ $1,000 - $1,500 _____ $2,000 - $2,500 _____ $500 - $1,000 _____ $1,500 - $2,000 __X___ Over $2,500 28. Please list your: City ___SALEM___________________________ State ____VA___________________ Zip Code ___24153_________________ 29. Race/Ethnicity: _____ African American _____ Asian American __X___ Caucasian/White _____ Latino/Hispanic _____ Native American _____ Pacific Islander _____ Other (please specify) _________________________________________ 30. Where or how did you receive this survey? _____ AJAO / Arthritis Foundation direct mail _____ Internet / AF web site _____ AJAO National Conference _____ Kids Get Arthritis Too newsletter _____ Arthritis Today magazine _____ Local or Chapter AJAO / AF camp or event _____ Doctor's office __X___ Other (specify)_______EMAIL______________________________ Please note any additional comments on reverse. Thank you! Quote Link to comment Share on other sites More sharing options...
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