Quality of Life Bone Marrow Transplant Survivors
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- Beatrix Blankenship
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1 NATIONAL MEDICAL CENTER AND BECKMAN RESEARCH INSTITUTE Quality of Life Bone Marrow Transplant Survivors Dear Colleague: Enclosed is the information you requested regarding our Quality of Life in Bone Marrow Transplant Survivors tools. This instrument has been derived from research in quality of life (QOL) conducted since 1983 by the investigators at the City of Hope National Medical Center, Duarte, CA. It is adapted to our bone marrow transplant (BMT) population in The instrument is based on our conceptualization of quality of life which includes the four domains of physical well being, psychological well being, social concerns, and spiritual well being. The instrument has two components. The first component consists of 20 forced-choice and open-ended items that relate to patient demographics and other patient characteristics. The second component contains 64 QOL items using 10-point scales. We have found it helpful to conduct QOL evaluation before transplant and at various points of time post-transplant. The quality of life items are divided into the four domains or subscales conceptualized by our QOL model. Following is the list of items identified by subscale. Physical well being: Items 21 through 38. Psychological well being: Items 39 through 61. Social concerns: Items 62 through 74. Spiritual well-being: Items 75 through 82. The last item (Items 38, 61, 74, and 82) in each of the domains asks the patient to rate his overall well being for that domain or subscale. These items are used in calculating a subscale score. Item 83 asks the patient whether or not he would recommend a BMT to a family member or close friend with the same illness. We have found this item useful in identifying whether or not the patient would undergo another BMT. Item 84 provides information as to whether or not the patient found that completing the tool was useful.
2 The instrument was developed specifically for QOL as it relates to BMT and was tested from 1990 through 1992 at the City of Hope National Medical Center. Psychometric analysis of the first version revealed content validity.90, test-retest reliability (r -.71, p =.001), total score internal consistency (r =.85, p =.01), subscale alphas of r =.40 to r =.86, and evaluation by multiple regression analysis, factor analysis, and item correlations. Complete discussion of the psychometrics is provided in the first reference of the attached bibliography. The current version of the tool (also attached) was developed based on the results of two studies (N = 212 and N = 174). Analysis of this data is still in progress. Also attached is a bibliography of our QOL research publications which includes citations specific to this BMT population. The fifth publication cited in the bibliography is attached for your convenience. You are welcome to use our instrument. We require no further request for permission. Please use the instrument as prepared and acknowledge it as Quality of Life in Bone Marrow Transplant Survivors, City of Hope National Medical Center (Grant, Ferrell, Rivera, Molina, and Forman). Scoring: It is important when coding the 10-point items that all items be coded to reflect 0 = worst outcome/negative QOL to 10 = best outcome/positive QOL. Many of the items are scored in the reverse. The following items need to be reverse coded prior to data entry or your results will be inaccurate. Items 21 through 37; 39, 50 through 60; 62 through 64, 67 through 70; 72; 73; and 75 Subscale scores are produced by adding the scores on each item within the subscale and then dividing the number of items in that subscale. (This calculation does not include the last item in each subscale [Items 38, 61, 74, and 82], nor items 83 and 84.) A total QOL score is obtained by adding the scores of items 21 through 37, 39 through 60, 62 through 73, and 75 through 81 and then dividing by 58. Each 10-point QOL item has a NA (not applicable) option. Score each NA item yes or no and separate from the 10-point scale. Thus, each QOL item is scored in two ways: 1) from 0 to 10 and 2) NA - yes or no. We hope that our Quality of Life in Bone Marrow Transplant Survivors tool is useful to your research. Sincerely, Betty R. Ferrell PhD, FAAN Research Scientist Marcia Grant, DNSc, FAAN Research Scientist Director Nursing Research & Education City of Hope National Medical Center 1500 E. Duarte Road Duarte, CA 91010
3 QUALITY OF LIFE IN BONE MARROW TRANSPLANT SURVIVORS Thank you for taking the time to complete this questionnaire. We want to ensure that your responses are anonymous and confidential. Once your completed questionnaires are received, a number will be assigned and your name will not appear on any questionnaires. All results will go directly to the Department of Nursing Research. Your individual responses will not be reported to your nurse, physician, or social worker. Therefore, if you have any specific concerns, please contact your nurse, physician, or social worker directly. See the enclosed colored sheet for their telephone numbers. Name Date Current address, if changes have occurred within the last year. Current address, if changes have occurred within the last year. Current telephone number including area code
4 ID # CITY OF HOPE NATIONAL MEDICAL CENTER STUDY QUALITY OF LIFE IN BONE MARROW TRANSPLANT SURVIVORS Please complete the following information: 1. Marital status prior to your bone marrow transplant (BMT). Single Married Divorced Widowed Separated Marital status now. Single Married Divorced Widowed Separated 2. Age 3. Height 4. Current weight 5. Are you satisfied with your current weight? 6. Has a substantial weight change occurred since your BMT? If yes, has it been an: Increase Decrease Please identify the number of pounds Please identify the number of pounds 7. How many colds and episodes of flu do you have per year? Is this more than, less than, or the same as before your BMT?
5 ID # 8. List all medications you are currently taking. Medication Name and Dose Physician's Instructions How are You Taking the for Taking the Medication Medication? Example: Advil 200 mg 1 tablet 4 times a day 1 tablet 3 times a day 9. Do you have chronic graft versus host disease? 10. Have you been able to return to work since your BMT? (part-time) t applicable (full-time)
6 ID # 11. If you have not been able to return to work, why not? 12. If you have returned to work, are you employed in the same occupation as before your BMT? If no, why did you change your occupation? 13. Have you been able to return to school since your BMT? (part-time) t applicable (full-time) 14. If you have not been able to return to school, why not? 15. Are you using any home treatments or remedies? If yes, please identify what you are using.
7 ID # 16. Please identify any activities that you participate in such as exercise, sports, or other recreational activities. 17. Do you currently have health insurance? 18. Have you experienced any difficulty with acquiring or maintaining health insurance? If yes, please explain. 19. Have you experienced any problems with your employer related to your disease or treatment? If yes, please explain.
8 ID # 20. Do you belong to a support group? If yes, to which group do you belong?
9 ID # Directions: We are interested in knowing how your experience of having cancer and having a BMT 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. NA = not applicable to me/doesn t apply to me Physical Well Being To what extent are the following a problem for you. 21. Skin changes 22. Bleeding problems 23. Mouth dryness 24. Changes in vision 25. Hearing loss 26. Fatigue 27. Ringing in your ears 28. Appetite changes 29. Physical strength 30. Sleep changes
10 31. Sexual activity 32. Pain or aches 33. Loss of feeling, tingling, or pain in your hands or feet 34. Shortness of breath or difficulty breathing 35. Constipation 36. Nausea 37. Fertility changes 38. Rate your overall physical health extremely poor excellent Psychological Well Being 39. Do you have any distress from visual changes? not at all a great deal 40. Has it been difficult for you to adjust to your illness? very difficult not at all 41. How good is your overall quality of life? extremely poor excellent 42. How much enjoyment are you getting out of life? none at all a great deal 43. How is your present ability to concentrate or to remember things? extremely excellent
11 poor 44. How useful do you feel? 45. How much happiness do you feel? none at all complete 46. Do you feel like you are in control of things in your life? 47. Do you enjoy the things in life now that you used to take for granted? none at all a great deal 48. How satisfying is your life? 49. How much have you been able to focus on being well again? not at all a great deal 50. Has your illness or treatment caused unwanted changes in your appearance? not at all a great deal 51. Are you fearful of recurrence of your cancer? 52. How difficult is it for you to cope as a result of your disease and treatment? 53. Has your illness or treatment decreased your self-concept (the way you see yourself)? 54. How distressing was the initial diagnosis of your cancer? 55. How distressing were your cancer treatments (i.e. chemotherapy, radiation, BMT, or surgery)? 56. How distressing has the time been since your treatment ended? 57. How much anxiety do you have? none at all severe 58. How much depression do you have? none at all severe
12 59. Are you fearful of a second cancer? 60. Are you fearful of the spreading (metastasis) of your cancer? 61. Rate your overall psychological well being extremely poor excellent Social Concerns 62. How much financial burden resulted from your illness or treatment? none extreme 63. How distressing has your illness been for your family? 64. Has your illness or treatment interfered with your personal relationships? 65. Is the amount of affection you receive sufficient to meet your needs? 66. Is the amount of affection you give sufficient to meet your needs? 67. Has your illness or treatment interfered with your sexuality? 68. Has your illness or treatment interfered with your plans to have children? not at all a great deal 69. Has your illness or treatment interfered with your employment? 70. Has your illness or treatment interfered with your family goals? 71. Is the amount of support you receive from others sufficient to meet your needs? 72. Has your illness or treatment interfered with your activities at home? 73. How much isolation is caused by your illness or treatment? none complete
13 74. Rate your overall social well being extremely poor excellent Spiritual Well Being 75. How much uncertainty do you feel about your future? none at all extreme 76. Do you sense a purpose/mission for your life or a reason for being alive? not at all a great deal 77. Do you have a sense of inner peace? 78. How hopeful do you feel? 79. Is the amount of support you receive from personal spiritual activities such as prayer or meditation sufficient to meet your needs? 80. Is the amount of support you receive from religious activities such as going to church or synagogue sufficient to meet your needs? 81. Has your illness made positive changes in your life? none at all extreme 82. Rate your overall spiritual well being extremely poor excellent 83. Would you recommend a bone marrow transplant to a family member or close friend with the same illness? not at all definitely yes 84. Has filling out this tool been useful to you?
14 Quality of Life in Bone Marrow Transplant Survivors Bibliography 1. Grant M, Ferrell B, Schmidt GM, Fonbuena P, Niland JC, & Forman SJ. Measurement of quality of life in bone marrow transplant survivors. Quality of Life Research, 1992; 1(6): Ferrell B, Grant M, Schmidt GM, Rhiner M, Whitehead C, Fonbuena P, & Forman SJ. The meaning of quality of life for bone marrow transplant survivors. Part 1: The impact of bone marrow transplant on quality of life. Cancer Nursing, 1992; 15(30): Ferrell B, Grant M, Schmidt G, Rhiner M, Whitehead C, Fonbuena P, & Forman SJ. The meaning of quality of life for bone marrow transplant survivors. Part 2: Improving quality of life for bone marrow transplant survivors. Cancer Nursing, 1992; 15(4): Schmidt GM, Niland JC, Forman SJ, Fonbuena P, Dagis AC, Ferrell BR, Grant M, Barr TA, Stallbaum BA, Chao NJ, & Blume KG. Extended follow up in 201 long-term allogeneic bone marrow transplant survivors: Addressing issues of quality of life. Transplantation, March Grant M, Ferrell B, Schmidt G, Fonbuena P, Niland J, & Forman S. Researching quality of life indicators: Their part on the daily life of bone marrow transplant patients. In CD Bailey (ED.), Proceedings of the Seventh international Conference on Cancer Nursing (Cancer nursing Changing Frontiers, Vienna, August 16-21, 1992) (pp ). Oxford, UK: Rapid Communications of Oxford.
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