CITY OF HOPE NATIONAL MEDICAL CENTER QUALITY OF LIFE QUESTIONNAIRE FOR PATIENTS WITH AN OSTOMY
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1 ID # CITY OF HOPE NATIONAL MEDICAL CENTER QUALITY OF LIFE QUESTIONNAIRE FOR PATIENTS WITH AN OSTOMY In advance, thank you for taking the time to complete this questionnaire. We want to ensure that your responses are anonymous. Your completed questionnaire is mailed directly to the Department of Nursing Research at City of Hope where an identification number will be assigned to the questionnaire. This front sheet will be separated from the questionnaire. Name Date A current address, if changes have occurred. Current telephone number including area code
2 ID # 1 CITY OF HOPE NATIONAL MEDICAL CENTER QUALITY OF LIFE QUESTIONNAIRE FOR PATIENTS WITH AN OSTOMY Demographic Information Following are some questions about yourself. 1. What kind of ostomy do you have? (Check (/) all that apply.) ileostomy colostomy urinary diversion 2. If you have a colostomy, is it permanent? or temporary? 3. If you have a urinary diversion, do you wear a bag at all times? No Yes 4. What illness or diagnosis led to your need for an ostomy? 5. If cancer was the reason for your ostomy, please specify the type of cancer. 6. For how many months/years have you had your ileostomy? colostomy? urinary diversion? 7. What is your gender? Male Female 8. What is your current age? 9. What is your height? 10. What is your current weight? 11. What is your ethnicity? African American American Indian Asian Black Caucasian Hispanic Other, please specify 12. What was your marital status prior to the surgery for your ostomy? Single Married Divorced Widowed Separated 13. What is your marital status now? Single Married Divorced Widowed Separated
3 ID # 2 For the following questions, please answer NO, YES, or NA (NOT APPLICABLE) by placing a check mark (/) in the appropriate column. No Yes NA Work-related items 14. Are you working full-time? 15. Are you working part-time? 16. Are you retired? 17. Are you working in the same occupation that you had before your ostomy? 18. If you are not working in the same occupation as before your ostomy, was the change related to having an ostomy? Health insurance 19. Do you currently have health insurance? 20. Have you had difficulty getting health insurance? 21. Have you had difficulty maintaining your health insurance? 22. Does your insurance pay all costs for your ostomy supplies? 23. Does your insurance pay part of the costs for your ostomy supplies? Sexual activity 24. Were you sexually active before getting your ostomy? 25. Have you resumed sexual activity since having your ostomy? 26. Is your sexual activity satisfying? 27. If you are male, do you have a problem getting an erection or keeping
4 ID # 3 an erection? Psychological Support/Concerns 28. Were you depressed after having your ostomy? 29. Since having your ostomy, have you ever considered or attempted suicide? 30. Do you belong to an ostomy support group? 31. Do you belong to another kind of support group? 32. Have you had the opportunity to talk with someone else who was going to have or had a new ostomy? Clothing 33. Does the location of your ostomy cause you problems? 34. Have you changed the style of clothing you wear because of your ostomy? Diet 35. Do you adjust your diet because of your ostomy? 36. Do you change your diet to prevent passing gas in public? No Yes NA Please answer the following questions in relation to the amount of time since the surgery for your ostomy. Your choices are MONTHS, YEARS, OR NEVER. Please place a check mark (/) in the appropriate column. 37. How long was it before you felt comfortable with your daily ostomy care? 38. How long was it before you felt comfortable with your diet? 39. How long was it before your appetite returned? Months Years Never
5 ID # 4 For the following questions, please answer NO, YES, or NA (NOT APPLICABLE -- meaning that you do not drink or eat these foods) by placing a check mark (/) in the appropriate column. Food Groups No Yes NA 40. I avoid drinking carbonated beverages. 41. I avoid eating dairy products. 42. I avoid eating fruits. 43. I avoid eating snacks. 44. I avoid eating vegetables. Following are some questions related to the care of your ostomy. Please write in your answers. 45. On the average, how long does it take to do your daily ostomy care? 46. If you wear a pouch, please identify the brand name. 47. If you wear a pouch AND have encountered any problems with it, please explain what those problems are/were.
6 ID # 5 Directions: We are interested in knowing how the experience of having an ostomy affects your quality of life. Please answer all of the following questions based on your life at this time. Please circle the number from 0-10 that best describes your experiences. For example: How difficult is it for you to climb stairs? not at all difficult extremely difficult Circling Α2 means you have some but not a lot of difficulty climbing stairs. Related to your ostomy, to what extent are the following a problem for you? 1. Physical strength 2. Fatigue 3. Skin surrounding the ostomy 4. Sleep disruptions 5. Aches or pains 6. Gas 7. Odor 8. Constipation 9. Diarrhea
7 ID # Leaking from the pouch (or around the appliance) 11. Overall physical well-being 12. How difficult has it been for you to adjust to your ostomy? 13. How useful do you feel? useful 14. How much satisfaction or enjoyment in life do you feel? None at all a great deal 15. How much are you embarrassed by your ostomy? embarrassed 16. How good is your overall quality of life? Extremely poor excellent 17. How is your ability to remember things? Extremely poor excellent 18. How difficult is it to look at your ostomy? difficult 19. How difficult is it for you to care for your ostomy? difficult 20. Do you feel like you are in control of things in your life? not at all completely
8 ID # How satisfied are you with your appearance? satisfied 22. How much anxiety do you have? none at all severe 23. How much depression do you have? none at all severe 24. Are you fearful that your disease will come back? fearful 25. Do you have difficulty meeting new people? difficult 26. How much financial burden resulted from your illness or treatment? none at all extreme 27. How distressing has your illness been for your family? distressing 28. How much does your ostomy interfere with your ability to travel? not at all completely 29. Has your ostomy interfered with your personal relationships? not at all completely 30. How much isolation is caused by your ostomy? none a great deal 31. Is support from friends and family sufficient to meet your needs?
9 ID # Has your ostomy interfered with your recreational/sports activities? 33. Has your ostomy interfered with your social activities? 34. Has your ostomy interfered with your ability to be intimate? 35. Do you have enough privacy at home for doing your ostomy care? 36. Do you have enough privacy when traveling for conducting your ostomy care? 37. How much uncertainty do you feel about your future? none at all extreme 38. Do you sense a reason for being alive? 39. Do you have a sense of inner peace? 40. How hopeful do you feel? 41. Is support you receive from personal spiritual activities such as prayer or meditation sufficient to meet your needs? not at all completely 42. Is support you receive from religious activities such as going to church or synagogue sufficient to meet your needs not at all completely 43. Has having an ostomy made positive changes in your life?
10 ID # 9 Many people have shared stories about their lives with an ostomy. Please share with us the greatest challenge you have encountered in having an ostomy.
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