Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 *** *** *** *** *** SURVEY *** *** *** *** *** Dear members, Happy 2005! Few medical case studies focus on people with autoimmune liver diseases, perhaps because there are not enough of us for researchers to spend the time and money on. Thus, we could be our own case study, of sorts. The following survey is for anyone with autoimmune liver disease. While the focus is on autoimmune hepatitis, if you don't have AIH you may answer the relevant survey questions for the disease you have and I'll tally those results separately. I posted this survey in both 's Autoimmune Hepatitis and groups; please respond once only. I'll collect reponses for two months, then tally and report the results to both group sites. The more people that respond, the more meaningful the results for all of us, so please take 5-10 minutes to complete this survey. TO RESPOND, email me directly with your answers. When viewing this survey, click on ``Reply.'' Then, at the top of the screen at ``To:'' toggle down to ``cherylwillow'' <cheryl@n...> to email it to me only (I don't want to clog the postings with survey results). Then, enter your response following each survey question. Click on ``Send'' to email me your responses. Thank you. Sincerely, Cheryl (cheryl@...) 1. Please note, if you don't have AIH, but have some other autoimmune liver disease, and would like to complete the relevant survey questions for the other disease, please write in which disease you're answering questions for. _______________________ liver disease 2. In what year were you diagnosed with AIH? ______ 3. How long did it take for you to be diagnosed with AIH? a. Less than 1 month b. Less than 3 months c. Less than 6 months d. ___ year/s 4. How old were you when you were diagnosed with AIH? a. Less than 18 years old b. 18-29 years old c. 30-39 years old d. 40-49 years old e. 50-59 years old f. 60 years old or more 5. You are a. Female b. Male 6. If female, have you had a child/children? a. Yes b. No 7. You are a. White b. African-American c. Hispanic d. Asian e. Native American f. Other _____________ 8. Have any of your relatives been diagnosed with an autoimmune disease? a. Parent/s b. Sibling/s c. Child/ren d. Other relation (i.e. aunt, cousin) _____________ 9. What type of AIH were you diagnosed with? a. Type I b. Type II 10. At that time, had you already been diagnosed with another autoimmune disease, or were you diagnosed with another at the same time? a. yes, already diagnosed with __________________ in ______ b. Yes, diagnosed with __________________ at the same time c. no 11. Have you since been diagnosed with another autoimmune disease? a. yes, ______________________ in __________ b. no 12. What AIH treatment medication do/did you take to reach chemical remission? a. prednisone or prednisolone b. azathioprine (Imuran) or mercaptopurine (6mp) c. a and b e. other _____________________ 13. How many years did you stay on prednisone/prednisolone before tapering off? a. less than 6 months b. 6-12 months c. 12-18 months d. 1 1/2 - 2 years e. 2-3 years f. 3-4 years g. ____ years h. haven't tapered off yet 14. If you tapered off the above, for how long did you stay in remission? a. less than 6 months b. 6-12 months c. 12-18 months d. 1 1/2 - 2 years e. 2-3 years f. 3-4 years g. ____ years h. still in remission 15. How many years did you stay on azathioprine/mercaptopurine before tapering off? a. ____ years b. haven't tapered off yet 16. If you tapered off the above, for how long did you stay in remission? a. less than 6 months b. 6-12 months c. 12-18 months d. 1 1/2 - 2 years e. 2-3 years f. 3-4 years g. ____ years h. still in remission 17. If you took a different medication, briefly describe how well it controlled ALT and AST. 18. If you had a liver biopsy when you were first diagnosed, what stage scarring was your liver at? a. Stage I b. Stage II c. Stage III d. Stage IV (with cirrhosis) 19. If you had a liver biopsy before tapering off all AIH medication, compared to your first liver biopsy, in this next biopsy the liver was a. less scarred (one stage lower) b. was similar (same stage) c. more scarred (one stage higher) d. now showed cirrhosis e. other __________________ 20. If you had a liver transplant, how many years did you have AIH before getting a transplant? ______ years 21. If you had a liver transplant, has AIH returned? a. yes b. no c. related problems ________________________________ Now, please answer several questions on how you have felt at various stages of your illness. 22. Regarding your symptoms when you first became sick with AIH, please rank order the following, with 1 being the most prevalent symptom. a. ___ fatigue b. ___ brain fog (i.e., confusion, inability to concentrate) c. ___ abdominal distress d. ___ jaundice e. ___ itching f. ___ rashes g. ___ aching joints, muscles h. ___ ascites i. ___ spider angiomata j. ___ depression k. ___ other _____________________________ 23.IF you have been in remission since first being diagnosed with AIH, how would you say you feel compared to how you felt prior to becoming ill initially? a. ___ more fatigued b. ___ brain fog (i.e., confusion, inability to concentrate) c. ___ abdominal distress d. ___ depressed e. ___ itching f. ___ rashes g. ___ aching joints and/or muscles h. ___ ascites i. ___ other _____________________________ 24. IF relevant, five years after first being diagnosed with AIH, how would you say you felt/feel compared to how you felt during your first remission? (IF you've had AIH less than 5 years, skip to Q29.) a. ___ more fatigued b. ___ increased brain fog (i.e., confusion, inability to concentrate) c. ___ increased abdominal distress d. ___ more depressed e. ___ increased itching f. ___ more/worse rashes g. ___ joints and/or muscles ache more h. ___ ascites worse i. ___ diagnosed with another disease j. ___ other _____________________________ 25. IF relevant, 10 years after first being diagnosed with AIH, how would you say you felt/feel compared to how you felt five years earlier? (OR, skip to Q29) a. ___ more fatigued b. ___ increased brain fog (i.e., confusion, inability to concentrate) c. ___ increased abdominal distress d. ___ more depressed e. ___ increased itching f. ___ more/worse rashes g. ___ joints and/or muscles ache more h. ___ ascites worse i. ___ diagnosed with another disease j. ___ other _____________________________ 26. IF relevant, 15 years after first being diagnosed with AIH, how would you say you felt/feel compared to how you felt five years earlier? (OR skip to Q29) a. ___ more fatigued b. ___ increased brain fog (i.e., confusion, inability to concentrate) c. ___ increased abdominal distress d. ___ more depressed e. ___ increased itching f. ___ more/worse rashes g. ___ joints and/or muscles ache more h. ___ ascites worse i. ___ diagnosed with another disease j. ___ other _____________________________ 27. IF relevant, 20 years after first being diagnosed with AIH, how would you say you felt/feel compared to how you felt five years earlier? a. ___ more fatigued b. ___ increased brain fog (i.e., confusion, inability to concentrate) c. ___ increased abdominal distress d. ___ more depressed e. ___ increased itching f. ___ more/worse rashes g. ___ joints and/or muscles ache more h. ___ ascites worse i. ___ diagnosed with another disease j. ___ other _____________________________ 28. IF relevant, 25 years after first being diagnosed with AIH, how would you say you felt/feel compared to how you felt five years earlier? a. ___ more fatigued b. ___ increased brain fog (i.e., confusion, inability to concentrate) c. ___ increased abdominal distress d. ___ more depressed e. ___ increased itching f. ___ more/worse rashes g. ___ joints and/or muscles ache more h. ___ ascites worse i. ___ diagnosed with another disease j. ___ other _____________________________ 29. Regarding side effects from prednisone or prednisolone, please check all that you experience/d. a. ___ thinning of the bones b. ___ weight gain c. ___ acne d. ___ insomnia e. ___ moon face f. ___ diabetes g. ___ high blood pressure h. ___ cataracts i. ___ other ___________________________ 30. Regarding side effects from azathioprine or 6mp, please check all that you experience/d. a. ___ nausea b. ___ drop in white blood cell count c. ___ drop in platelet count d. ___ pancreatitis e. ___ lymphoma f. ___ other ___________________________ 31. If we think hard, most of us could come up with at least one positive thing that has come from having AIH. Please check all that apply, or share your own. a. ___ I take better care of myself now. b. ___ I appreciate how many friends I have who care about me. c. ___ I no longer wonder, ``How would I look with a mustache?'' d. ___ While on prednisone, I have an excuse for gaining weight. e. ___ I've saved loads of money not buying beer and/or cigarettes. f. ___ Prednisone lessened my aches and pains. g. ___ other ___________________________ Thank you so much for taking the time to answer these questions. Happy New Year, Cheryl Quote Link to comment Share on other sites More sharing options...
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