Persons using assistive technology may not be able to fully access information in this file. For assistance, e-mail niddk-cr@imsweb.com. Include the Web site and filename in your message. 7 QA NIDDK Liver Transplantation Database QUALITY OF LIFE FORM: ADULTS 06/30/1999 Version 2.0 FOR DATA CENTER USE ONLY COMPLETION LOG LTD ID: Follow-up Year: _______ DATE DCCM DCCD DCCY Form Received ____/____/____ Data Entry ____/____/____ Sysid _____ SYSID Verification ____/____/____ Cleaned ____/____/____ Transfer ____/____/____ MM DD YY ********************************************************************************************* INTRODUCTION As a participant in this study of liver transplantation, you are asked to fill out this questionnaire about your general health. Please fill out the form as honestly as you can, describing how you have felt and how well you have been able to function. Try to avoid exaggerating your symptoms as well as underestimating them. The information that you give will not be revealed to the doctors or nurses who are taking care of you but will be kept confidential. The information will not affect your medical care in any way. This questionnaire will be given to you each year during the follow up study. Filling out this form is voluntary. If you do not want to answer certain questions, just cross them out on the form. If you are too sick to answer the questions, we ask that your next of kin answer the first 16 questions for you. LTD ID ____________________________ ID FOLLOW UP YEAR ______________ ETMPT (ETMPT) A. GENERAL INFORMATION BOM BOD BOY 1. What is your date of birth? ______/______/______ (month) (day) (year) 2. What is your sex? (check one) SEX (SEX) __ 1. Male __ 2. Female 3. What is your height and weight? 3.1 Height: HGTFT _____ feet HGTIN _____ inches 3.2 Weight: WGTLB _____ in pounds 4. What is your current marital status? (check one) MSTX (MSTX) __ 1. Never married __ 2. Married/cohabitating __ 3. Separated __ 4. Divorced __ 5. Widowed 5. With whom do you live? (check one) LIVE (LIVE) __ 1. Live alone __ 2. With spouse or partner __ 3. With spouse/partner and children __ 4. With children only __ 5. With parents only __ 6. With other family members or friends __ 7. Other __________________________________________________ LIVES specify (30 char) 6. Besides yourself, how many other people live in your household? LIVNO _____ people 7. How many years of education have you completed? EDUC _____ years 8. What is the highest education degree you have obtained? (check one) DEGR (DEGR) __ 1. Never graduated from high school __ 2. High School diploma __ 3. Trade School degree beyond high school __ 4. College/University degree __ 5. Advanced degree (M.A., M.S., Ph.D., M.D., J.D., etc.) 9. Do you currently smoke cigarettes? (check one) CSMK (YNQOL) __ Yes __ No IF YES 9.1 What is the average number of cigarettes that you smoke each day? (check one) SDAY (SDAY) __ 1. Less than 1/2 pack __ 2. 1/2 to 1 pack __ 3. 1 to 2 packs __ 4. More than 2 packs 10. Do you currently drink alcohol? (check one) CD (YNQOL) __ Yes __ No IF YES 10.1 How many drinks of alcohol do you have in a typical week (one drink = 1 bottle beer or 1 glass of wine or one mixed drink)? DWK _______ drinks per week B. WORK Many patients with liver problems are not able to work or to take care of their household. These questions are meant to record your work experience. 11. Since finishing school (high school, college or trade school) how many years have you worked either full-time or part-time? WORK ________ years 12. What is your current occupation? ____________________________________________________ OCCUS specify (30 char) 13. What is your current work activity or employment status? (check one) EMPL (EMPL) __ 1. Employed full-time __ 2. Employed part-time __ 3. Employed, but temporarily laid off __ 4. Unemployed, looking for work __ 5. Unemployed, not looking for work __ 6. Unemployed, unable to work because of health __ 7. Homemaker __ 8. Student full-time __ 9. Student part-time __ 10. Retired __ 11. Other _______________________________________________ EMPLS specify (30 char) 14. Does your health keep you from working for pay or from being a homemaker or from going to school? (check one) PWORK (YNQOL) __ Yes __ No 15. Are you limited in the kind of work for pay, house work, or school work you can do because of your health? (check one) KWORK (YNQOL) __ Yes __ No 16. Are you limited in the amount of work for pay, house work or school work you can do because of your health? (check one) AWORK (YNQOL) __ Yes __ No 17. How satisfied are you with your present work situation or your present ability to function as a homemaker or a student? (check one) SWORK (STFY) __ 1. Completely satisfied __ 2. Very satisfied __ 3. Satisfied __ 4. Neutral __ 5. Dissatisfied __ 6. Very dissatisfied __ 7. Completely dissatisfied __ 8. Doesn't apply C. HEALTH These questions deal with your general health and how it affects your everyday life and ability to work. 18. How would you rate your overall health at the present time? (check one) __ 1. Excellent HLTH (HLTH) __ 2. Good __ 3. Fair __ 4. Poor 19. Compared to one year ago, how would you rate your health? (check one) __ 1. Better YHLTH (YHLTH) __ 2. About the same __ 3. Worse 20. During the last month, how much bodily pain have you had? (check one) __ 1. None PAIN (SSCALE) __ 2. Mild __ 3. Moderate __ 4. Severe 21. During the past month, how many days have you been sick in bed for at least part of the day? SICK ________ days 22. During the past year, how many days would you estimate that you have been in the hospital as an inpatient? INPAT ________ days 23. During the past year, how many days would you estimate that you have been out of work because of your health? OWORK ________ days 24. Does your health currently limit the kind of vigoros activities that you can do, such as running heavy lifting, sports (check one) LACT (YNQOL) __ Yes __ No 25. Do you now have any trouble walking several blocks or climbing a few flights of stairs because of your health? (check one) TWBC (YNQOL) __ Yes __ No 26. Do you now have any trouble walking a single block or climbing one flight of stairs because of your health? (check one) TWSB (YNQOL) __ Yes __ No 27. Do you currently have trouble bending, lifting or stooping because of your health? (check one) __ Yes BEND (YNQOL) __ No 28. Overall, how satisfied are you with your health at the present time? (check one) __ 1. Completely satisfied SHLTH (STFY) __ 2. Very satisfied __ 3. Satisfied __ 4. Neutral __ 5. Dissatisfied __ 6. Very dissatisfied __ 7. Completely dissatisfied 29. Which of the eight following statements best describes your state of health, how you feel and your level of activity? (check one) SOH (SOH) __ 1. Normal; no complaints, no evidence of disease. __ 2. Able to carry out normal activity; minor symptoms. __ 3. Able to carry out normal activity with effort, some symptoms. __ 4. Able to care for myself but unable to carry on normal activity or do active work. __ 5. Requiring occasional assistance but able to care for most of my own needs. __ 6. Requiring considerable assistance and frequent medical care. __ 7. Disabled; requiring special care and assistance. __ 8. Worse off than any of these statements suggest. 30. Is your present state of health causing problems with your: (check one for each question) 30.1 Job or work (that is: paid employment) SHW (YNQOL) __ Yes __ No 30.2 Looking after the home (examples: cleaning, cooking, doing odd jobs) __ Yes LAH (YNQOL) __ No 30.3 Social life (examples: going out, seeing friends, going to a show) __ Yes SL (YNQOL) __ No 30.4 Home life (that is: relationships with other people in your home) __ Yes HL (YNQOL) __ No 30.5 Sex life __ Yes SEXL (YNQOL) __ No 30.6 Interests and hobbies (examples: sports, arts and crafts, do-it-yourself) __ Yes IAH (YNQOL) __ No 30.7 Vacations (examples: summer or winter vacations, weekends away) __ Yes VACA (YNQOL) __ No D. SYMPTOMS Below is a list of problems and complaints that people sometimes have. Please read each item carefully and circle the number on the right hand side that best indicates how much you were distressed by each symptom during past month. Circle only one number for each item. (STMP) at A little Moder- Quite all bit ately a bit Extremely 0 1 2 3 4 _____________________________________________________ FAT 31. Fatigue or lack of energy 0 1 2 3 4 MUSW 32. Muscle weakness 0 1 2 3 4 PAPP 33. Poor appetite 0 1 2 3 4 EAPP 34. Excess appetite or overeating 0 1 2 3 4 __________________________________________________ NOV 35. Nausea or vomiting 0 1 2 3 4 ABP 36. Abdominal pains or discomfort 0 1 2 3 4 ABS 37. Abdominal swelling or bloating 0 1 2 3 4 BOWP 38. Bowel problems (diarrhea/constipation) 0 1 2 3 4 ____________________________________________________ MAP 39. Muscle aches or pains 0 1 2 3 4 JAP 40. Joint aches or pains 0 1 2 3 4 BACKP 41. Back pains 0 1 2 3 4 HEADA 42. Headaches 0 1 2 3 4 _____________________________________________________ DCON 43. Difficulty concentrating 0 1 2 3 4 INSOM 44. Sleeplessness or insomnia 0 1 2 3 4 ANXI 45. Nervousness, anxiety 0 1 2 3 4 MOODS 46. Mood swings 0 1 2 3 4 _____________________________________________________ SAD 47. Feeling depressed, sad or blue 0 1 2 3 4 TREMB 48. Trembling or shakiness 0 1 2 3 4 DIIS 49. Decreased interest in sex 0 1 2 3 4 IMP 50. Impotence (men only) 0 1 2 3 4 _____________________________________________________ PVIS 51. Poor or blurred vision 0 1 2 3 4 CFA 52. Change in facial appearance 0 1 2 3 4 BFS 53. Bruising or fragile skin 0 1 2 3 4 WART 54. Warts 0 1 2 3 4 _____________________________________________________ IOS 55. Itching of skin 0 1 2 3 4 FRSA 56. Fluid retention or swelling of ankles 0 1 2 3 4 JAUND 57. Jaundice (yellow tinge to eyes) 0 1 2 3 4 DOU 58. Darkening of the urine 0 1 2 3 4 E. QUALITY OF LIFE The following questions are aimed at evaluating your quality of life in general including your satisfaction with your life. 59. Taking all things together, how would you say things are these days? Would you say you're: (check one) HAPPY (HAPPY) __ 1. Very happy __ 2. Pretty happy __ 3. Not too happy 60. All things considered, how satisfied are you with your life as a whole these days? (check one) __ 1. Completely satisfied SLIFE (STFY) __ 2. Very satisfied __ 3. Satisfied __ 4. Neutral __ 5. Dissatisfied __ 6. Very dissatisfied __ 7. Completely dissatisfied 61. All things considered, how satisfied are you with your family life - the time you spend and the things you do with members of your family? (check one) FLIFE (STFY) __ 1. Completely satisfied __ 2. Very satisfied __ 3. Satisfied __ 4. Neutral __ 5. Dissatisfied __ 6. Very dissatisfied __ 7. Completely dissatisfied __ 8. Doesn't apply, I have no family 62. How satisfied are you with your marriage? (check one) MARR (STFY) __ 1. Completely satisfied __ 2. Very satisfied __ 3. Satisfied __ 4. Neutral __ 5. Dissatisfied __ 6. Very dissatisfied __ 7. Completely dissatisfied __ 8. Doesn't apply, not married 63. Here are some words and phrases which we would like you to use to best describe how you feel about your present life. For example, if you think your present life is very "boring", put an X in the box right next to the word "boring". If you think it is very "interesting", put an X in the box right next to the word "interesting". If you think it is somewhere in between put an X where you think it belongs. Put an X in one box on every line. (1) (2) (3) (4) (5) (6) (7) BI 63.1 Boring Interesting EM 63.2 Enjoyable Miserable EH 63.3 Easy Hard UW 63.4 Useless Worthwhile FL 63.5 Friendly Lonely FE 63.6 Full Empty DH 63.7 Discouraging Hopeful TDF 63.8 Tied Down Free DR 63.9 Disappointing Rewarding BBNC 63.10 Brings out the Doesn't give best in me me much of a chance 64. THIS FORM WAS FILLED OUT BY (check one): __ 1. patient alone FFOBY (FFOBY) __ 2. patient with assistance __ 3. Other Relationship _________________________ NKR 65. Today's Date: ______/______/______ EVALM EVALD EVALY (month) (day) (year) Thank you for spending the time to fill out this form. COMM (YN) COM1 COM2 COM3 COM4 COM5 COM6 COM7 COM8 COM9 COM10