Optional for reviewers or can be added as an Appendix (questionnaire)
Health and Well-being
Opinion Questionnaire
Date ____/____/___
Interviewer ______
Study Identification Number ______
This questionnaire consists of two sections. The first one asks you some questions about your background and medical history and the second one will ask you questions about health states related to familial breast and ovarian cancer.
1. What is your date of birth ? ______/ ______/______
Month Day Year
2.Is your ethnic background Hispanic or Latino?___ Yes ___ No
3.Which of the following best describes you?
3.1Black or African-American ____
3.2 White or European-American ____
3.2East Asian ____
3.3South Asian ____
3.4Other _____ Please specify ______
4.In what country were you born? ______
5.In what religion were you raised? 6. What is your current religion?
5.1Buddhist ____ 6.1 Buddhist ____
5.2Catholic ____ 6.2 Catholic ____
5.3Hindu ____ 6.3 Hindu _____
5.4Jewish ____ 6.4 Jewish _____
5.5Muslim ____ 6.5 Muslim_____
5.6Protestant; denomination ______6.6 Protestant; denomination ______
5.7None ____ 6.7 None ____
5.8Other; please specify ______6.8 Other; please specify ______
7. What level of education have you completed?
7.1Grade school (1-8)_____
7.2High school (9-12) _____
7.3 Post-high school vocational/technical training _____
7.4 Some junior college or credits toward associates degree _____
7.5 Associates degree _____
7.6Some college _____
7.7Bachelors degree _____
7.8 Graduate work _____
7.9 Masters degree _____
7.10Doctoral or equivalent degree _____
7.11Other; please specify ______
8. What is your current employment status? (Please check all that apply.)
8.1 Full-time employee in a business organization_____
8.2 Full-time consultant or self-employed_____
8.3Full-time student_____
8.4Full-time informally employed at home (e.g., child care, homemaker) ____
8.5Unemployed____
8.6On disability____
8.7Retired____
8.8Employed part-time____
8.9Part-time student ____
9. What is your current occupation? ______
10Are you currently:
10.1 Married _____
10.2 Living with a partner _____
10.3 Separated/divorced _____
10.4 Widowed _____
10.5 Single (never married) _____
10.6 Other ______
11. What is your current annual household income?11.1 $0-15,000 _____
11.2 $15,001-$30,000 _____
11.3 $30,001-$45,000 _____
11.4 $45,001-$60,000 _____
11.5 $60,001-$75,000 _____
11.6 $75,001-$100,000_____
11.7 $100,001+
12.Have you ever had any serious disease, such as heart disease, problems with the stomach, or diabetes, which required the regular use of medication, hospitalization, or follow-up visits to your doctors? If yes, what disease(s) did you have?
1. ______Date diagnosed _____/_____ [month/year]
2. ______Date diagnosed _____/_____ [month/year]
3. ______Date diagnosed _____/_____ [month/year]
13.Have you ever had a Pap test? Yes___ No____ Don’t know______
14.When was the last time you had a Pap test? _____/_____/_____ [month/day/year]
15. Have you ever had a test for cancer genes? Yes ____ No ____ Don’t know ____
16.Have you ever had a mammogram? Yes ____ No ____ Don’t know ____
17.If yes, how old were you when you had your first mammogram? ______years
18.Do you do breast self-examination? Yes ___ No ___ If so, how often? ____ times a ______
19. Have you ever had a clinical breast examination (had your breasts examined by a physician)?
Yes ____ No ____ Don’t know ____
20. Have you ever had surgery related to cancer? No __ Yes __ If so, ___/___ [month/year]
21.Have you taken or are you taking birth control pills?
Start End
No __ Yes __ If so, ___/___ [month/year] ___/___ [month/year]
If yes, what brand have you most used?______
22. Have you ever smoked more than one cigarette a day for a month or more? Yes ____ No ____
23.Has any one in your immediate family (mother, sister, or daughter) had breast or ovarian cancer?
Yes ____ No ____ Don’t know ____
If yes, please check all that apply. If more than one, please write the number of sisters or daughters who had that cancer.
Breast Cancer / Ovarian CancerMother
Sister(s)
Daughter(s)
II. The next group of questions is about your health and well-being.
1.In general, would you say your health is:
1.1Excellent ___
1.2Very good ___
1.3Good___
1.4Fair___
1.5Poor___
2.Compared to one year ago, how would you rate your health in general now?
2.1 Much better than one year ago___
2.2 Somewhat better than one year ago___
2.3 About the same as one year ago___
2.4 Somewhat worse than one year ago___
2.5 Much worse than one year ago___
The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
Yes, limited Yes, limited No, not limited
a lot a little at all______
3. Vigorous activities such as running, lifting heavy objects______
4.Moderate activities, such as moving a table, pushing a
Vacuum cleaner, bowling, or playing golf______
5. Lifting or carrying groceries ______
6. Climbing several flights of stairs______
7. Climbing one flight of stairs______
8. Bending, kneeling, or stooping______
9. Walking more than a mile______
10. Walking several blocks______
11. Walking one block______
12. Bathing or dressing yourself ______
During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? Yes No
13. Cut down the amount of time you spent on work or other activities______
14. Accomplished less than you would like______
15. Were limited in the kind of work or other activities______
16. Had difficulty performing the work or other activities (for example, it
took extra effort) ______
During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious?
Yes No
17. Cut down the amount of time you spent on work or other activities______
18. Accomplished less than you would like______
19. Didn’t do work or other activities as carefully as usual______
20.During the past 4 weeks, to what extent have your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups?
20.1 Not at all___
20.2 Slightly___
20.3 Moderately___
20.4 Quite a bit ___
20.5 Extremely___
21.How much bodily pain have you had in the past 4 weeks?
21.1 None___
21.2 Very mild___
21.3 Mild___
21.4 Moderate___
21.5 Severe___
21.6 Very severe___
22.During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?
22.1 Not at all___
22.2 A little bit___
22.3 Moderately___
22.4 Quite a bit___
22.5 Extremely___
The following questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling.
How much of the time All of Most of A good bit Some of A little of None of
during the past 4 weeks . . . the time the time the time the time the time the time
23. Did you feel full of pep? ______
24. Have you been a very nervous person? ______
25. Have you felt so down in the dumps that
nothing could cheer you up? ______
26. Have you felt calm and peaceful? ______
How much of the time All of Most of A good bit Some of A little of None of
during the past 4 weeks . . . the time the time the time the time the time the time
27. Did you have a lot of energy? ______
28. Have you felt downhearted and blue? ______
29. Did you feel worn out? ______
30. Have you been a happy person? ______
31. Did you feel tired? ______
During the past 4 weeks, how much of the time have your physical health or emotional problems interfered with your social activities (like visiting friends, relateives, etc.)?
32.1 All of the time ___
32.2 Most of the time___
32.3 Some of the time ___
32.4 A little of the time___
32.5 None of the time___
How TRUE or FALSE is each of the following statements for you?
Definitely Mostly Don’t Mostly Definitely
true true know false false
33. I seem to get sick a little easier than other people ______
34. I am as healthy as anybody I know. ______
35. I expect my health to get worse. ______
36. My health is excellent. ______
Please answer YES or NO for each question. Yes No
37. In the past year, have you had 2 weeks or more during which you felt sad, blue, or
depressed, or when you lost all interest or pleasure in things that you usually cared
about or enjoyed? ______
38. Have you had 2 years or more in your life when you felt depressed or sad most
days, even if you felt okay sometimes? ______
39. Have you felt depressed or sad much of the time in the past year? ______
40.The scale below shows the potential range of the sense of health and well-being between 0 = death and 100 = Best possible.Please draw a vertical line on the scale where you would rate your sense of your own health and well-being right now.
0 death / 10 / 20 / 30 / 40 / 50 / 60 / 70 / 80 / 90 / 100 / BestSection II.
The information below consists of generalizations based on national data and studies about cancer risks and cancer genes. Actual risks for any particular individual depend on many factors that vary from person to person. The information is provided as background. You may want to refer to it when you think about the health states described in the questionnaire.
A. Background information about cancer risks
Women in the United States. Among women in the United States, average life expectancy is 78 years; average risk of developing breast cancer by age 85 is 12-13%; and average risk of developing ovarian cancer is 1-2%.
Women with breast cancer. Among women with breast cancer, 87% survive 5 years; 77% survive 10 years, and 65% survive 15 years.
B. Background information about increased cancer risks
Women with certain characteristics may have a lifetime breast cancer risk that is much higher than the average of 12-13%. Such characteristics include older age; a close relative (mother, sister, or daughter) who has had breast cancer; a personal history of breast biopsies, hormone use; or one of several recently identified genetic mutations (abnormal genes).
B. Background information about cancer genes
Certain abnormal genes associated with high risk for breast cancer were identified in 1994 and 1995. Tests for these genes have been available since 1995. Some women who test positive for a breast cancer gene have up to 85% probability of developing breast cancer and a 30% chance of developing ovarian cancer by age 80 years. (Of 100 women, who test positive, 85 will develop breast cancer and 30 will develop ovarian cancer.) Their daughters and sisters have a 50% chance of having inherited the mutated gene. Their sons and brothers also have a 50% chance of inheriting the gene, which appears to increase the risk of prostate cancer and male breast cancer.
C. What this questionnaire involves
This questionnaire describes nine cancer-related states or conditions. The background information and descriptions of these cancer-related states involve generalizations and hypothetical or imaginary situations. The situations described do not refer to any specific real individual.
You will be asked to imagine that you are in that state and to calculate your future life expectancy in years if you were a person in that state. You will then be asked how many of those future years of life you would trade to avoid being in that state. We ask you to imagine that you could avoid that cancer-related state if you gave up some or all of your future years of life.
We are asking these questions in order to find out how each state would affect your quality of life, and what choices you would make between quality and quantity of life. If you would not trade any years to avoid being in a particular state, then either quantity of life is very important to you or the state would not lower the quality of your life. The more years you trade, the less time you have left in which to enjoy life free of that cancer-related state.
1. Imagine that you test positive for an abnormal breast cancer gene. You have a strong family history of breast cancer; you took care of your mother until she died of it 20 years ago, and your sister was recently diagnosed with it. Taking the risks associated with breast cancer genes into account, women who have these genes live, on the average, to age 70. You have a son and a daughter. Each of your children has a 50% risk of having the gene.
1 a. You also are told about a new treatment. By taking one tamoxifen pill daily, you can reduce your risk of breast cancer by 50%, from 85% to 43%. However, women who take the pill do not live as long, on the average, as women who do not take it. Two women out of a thousand who take this pill may develop blood clots or endometrial cancer. Women who take this pill may also have an increase in hot flashes and night sweats.
(1) Average age at death 70
(2) How old are you now? - ____
(3) Your life expectancy _____ (70 minus your current age)
How many of the years in line (3) above would you be willing to give up to reduce your risk of breast cancer by 50% without having to take the tamoxifen pill daily and to be at risk for its side effects?
_____ years
1 b. You also are told about another new treatment. By taking one pill, you can painlessly and completely change your high-risk gene to a normal gene. Your breast cancer risk will then be that of the average woman, about 12-13%. Each of your children will still have a 50% risk of having the gene. Also, women who take the pill do not live as long, on the average, as women who do not take it.
(1) Average age at death 70
(2) How old are you now? - ____
(3) Your life expectancy _____ (70 minus your current age)
How many of the years in line (3) above would you be willing to give up to change your high-risk gene to a normal gene?
_____ years
1 c. How many of the years in line (3) above would you be willing to give up to change your and your children’s high-risk gene to a normal gene?
_____ years
2. Imagine that you test positive for an abnormal breast cancer gene. You are told that by both taking one tamoxifen pill every day for five years and undergoing oophorectomy, surgical removal of both ovaries, you can reduce your risk of breast cancer by 85%, from 85% to about 13%. You also reduce your risk of ovarian cancer by 96%, from 30% to 3%. However, women who take tamoxifen do not live as long, on the average, as women who do not take it. Two women out of a thousand who take this pill may develop blood clots or endometrial cancer. Women who take tamoxifen may also have an increase in hot flashes and night sweats.
How many of the years in line (3) above would you be willing to give up to reduce your breast cancer risk by 85% and your ovarian cancer risk by 96% without having to take tamoxifen daily or to undergo oophorectomy?
_____ years
3. Imagine that you test positive for BRCA1 or BRCA2. You are told that by both taking one oral contraceptive pill every day for five years, you can reduce your risk of ovarian cancer by 50%, from 30% to 15%. However, women who take this pill do not live as long, on the average, as women who do not take it. Side effects of this pill may include an increased risk of heart attack, stroke, and blood clots for women with certain risk factors. Some women also experience mood swings and weight changes while on the pill.
How many of the years in line (3) above would you be willing to give up to reduce your ovarian cancer by 50% without taking the oral contraceptive pill?
______years
If you are willing to trade less than one year, how many months would you be willing to trade?
______months
4. Imagine that you are diagnosed with breast cancer. Your therapy includes mastectomy with reconstruction and chemotherapy. Afterwards, you feel well and resume your previous activities and social and personal life. You are told that you have a 30% risk that the cancer will come back. (Of 100 women successfully treated for breast cancer, about 30 find that the cancer comes back within 5 years.) Taking that risk into account, women like you live, on the average, to age 70.
You also are told about a new treatment. By taking one pill, you can painlessly and completely eliminate your breast cancer history, the effects of your past treatment, and your future risk of breast cancer recurrence. However, women who take the pill do not live as long, on the average, as women who do not take it.
(1) Average age at death 70
(2) How old are you now? - ____
(3) Your life expectancy _____ (70 minus your current age)
How many of the years in line (3) above would you give up to eliminate your breast cancer?
_____ years
5. Imagine that you are diagnosed with ovarian cancer. Your therapy includes abdominal surgery (hysterectomy and oophorectomy) and chemotherapy. Afterwards, you feel well and resume your previous activities and social and personal life. You are told that you have a 50% risk that the cancer will come back. (Of 100 women successfully treated for ovarian cancer, about 50 find that the cancer comes back within 5 years.). Taking that risk into account, women like you live, on the average, to age 70.
You also are told about a new treatment. By taking one pill, you can painlessly and completely eliminate your ovarian cancer history, the effects of your past treatment, and your future risk of ovarian cancer recurrence. However, women who take the pill do not live as long, on the average, as women who do not take it.
(1) Average age at death 70