Genomics and Family History Survey Questions Updated March 2007 Compiled by the University of Washington Center for Genomics & Public Health

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1 Genomics and Survey Questions Updated March 2007 Compiled by the University of Washington Center for Genomics & Public Health This publication is distributed free of charge and supported by CDC Grant #U10/CCU Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.

2 Introduction Compiled genomics survey questions At the request of our state partners, a summary document of all genomics and family-history questions used on select state and federal population-based surveys from 1999 to 2008 was compiled for reference. The compiled questions are from the following surveys: Behavioral Risk Factor Surveillance System (BRFSS) Centers for Disease Control and Prevention HealthStyles Survey National Health and Nutrition Examination Survey (NHANES) National Health Interview Survey California Health Interview Survey Pregnancy Risk Assessment Monitoring System If we have missed any questions, please contact us and we will include your question(s). How to use this tool Survey questions are grouped together by type of survey used as well as according to year. They are listed chronologically and by type in the Table of Contents. Click on any one of the titles. The link will take you directly to that survey s questions. A topic index is found at the end of this compilation for easy reference. Why is data from survey questions important? Results from these questions can provide vital information towards quantifying the health impact of family history strategies. This evidence is important to public health practitioners in order to be able to establish policies and best practices for collecting and using family history information. Answers to these questions can be revealing: If results show a positive family history of a disease, then that translates to a prevalence of disease in populations or specific groups. If results show that people accurately collected family history information from family members, then this translates to how much the public is aware of family history as a risk factor in disease. If results show that a public health provider discussed an inherited risk of disease with them, then this information can be used to track provider practices around collecting family history information. If results show that people perceived themselves to be at high risk of disease, then this means we can better understand patients perception of disease risk. If results show that the public has made lifestyle changes to reduce risk, then we can better investigate beliefs about modifiable risk factors and tailor public health promotion programs to respond to those beliefs.

3 iii Contents 1 Behavioral Risk Factor Surveillance System 2004 Connecticut Departmentof Community Health Behavioral Risk Factor Surveillance System 2005 Michigan Department of Community Health (BRFSS 2005)... 3 Oregon Department of Community Health (BRFSS 2005) Utah Department of Community Health (BRFSS 2005) Behavioral Risk Factor Surveillance System 2006 Connecticut Department of Community Health (BRFSS 2006).. 7 Michigan Department of Community Health (BRFSS 2006)... 8 Oregon Department of Community Health (BRFSS 2006) Utah Department of Community Health (BRFSS 2006)

4 iv TABLE OF CONTENTS 4 Behavioral Risk Factor Surveillance System 2007 Michigan Department of Community Health (BRFSS 2007) Oregon Department of Community Health (BRFSS 2007) Utah Department of Community Health (BRFSS 2007) Vermont Department of Community Health (BRFSS 2007) CDC HealthStyles CDC HEALTHSTYLES (2000) CDC HEALTHSTYLES (2001) CDC HEALTHSTYLES (2002) CDC HEALTHSTYLES (2003) CDC HEALTHSTYLES (2004) CDC HEALTHSTYLES (2005) CDC HEALTHSTYLES (2006) CDC HEALTHSTYLES (2008) CDC DOCSTYLES (2006) California Health Interview Survey 2005 California Health Interview Survey (2005) Pregnancy Risk Assessment Monitoring System 2005 (Oregon) Oregon Department of Human Services (2005 PRAMS) , Osteoporosis, Arthritis Behavioral Risk Factor Survey (Michigan) 2005 Michigan Department of Community Health (, Osteoporosis, Arthritis Behavioral Risk Factor Survey 2005) Youth Risk Behavior Survey (Utah) 2007 Utah Department of Health (2007 YRBS) National Health and Nutrition Examination Survey (NHANES) NHANES III NHANES National Health Interview Survey (2000) National Health Interview Survey (2000)

5 1 Behavioral Risk Factor Surveillance System 2004 CONNECTICUT DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2004) Genetic vs. Environmental Causes of Disease Several For the January to June 2004 EH 2 (no EH3 question) would be asked with the wording environment. For the July to December EH 3 would be asked worded family history or genetics and no EH 2 question. It is unclear how much the environment plays a role in most diseases. EH.2 How likely do you think the environment helps to cause the following health conditions? Most likely Somewhat likely Not likely Don t know Ref a. Asthma b. Birth defects c. Cancer d. Heart Disease e. Learning Disabilities f. Multiple Sclerosis g h. Arthritis It is unclear how much family history or genetics plays a role in most diseases. EH.3 How likely do you think family history or genetics helps to cause the following health conditions? Most likely Somewhat likely Not likely Don t know Ref a. Asthma b. Birth defects c. Cancer d. Heart Disease e. Learning Disabilities f. Multiple Sclerosis g h. Arthritis

6 Behavioral Risk Factor Surveillance System 2004 MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2004) Collection of Family History NA 1.The next questions are about your medical family history. This would include the diseases and health problems of your parents, grandparents, brothers, and sisters. Has a doctor or other health care professional ever asked you to fill out a form or personally asked you about your medical family history? Yes No (Skip to next section) Adopted, don t know family history (Skip to next section) Don t Know (Skip to next section) Refused (Skip to next section) Oregon Department of Human Services 2005 BRFSS Risk Assessment based on NA 2. Did the doctor or health care professional then discuss with you your risk for certain diseases or health problems based on your family history? Yes No (Skip to next section) No need because you had no family history of the illness (skip to next section) Don t Know (Skip to next section) Refused (Skip to next section) Recommendations based on NA 3. Did the doctor or health care professional make any recommendations to you based on your family history? Yes No Don t Know Refused Recommendations based on NA 4. Did they recommend that you... Change your diet Exercise more Stop smoking Take medication Have routine health tests (for screening) Something else (specify) No other responses Don t know Refused MINNESOTA DEPARTMENT OF HEALTH (BRFSS 2004) Topic Disease(s) Questions of To your knowledge, have any of your blood relatives, such as grandparents, parents or their siblings, or your brothers or sisters had diabetes?

7 2 Behavioral Risk Factor Surveillance System 2005 MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2005) Collection of Family History NA 1. Have you ever actively collected health information from your relatives for purposes of developing a family health history? Yes No Don t Know Refused Utah Department of Health 2006 BRFSS; HealthStyles 2004 : Importance NA 2. How important do you think knowledge of your family s health history is to your personal health? Very important Somewhat important Not at all important Don t Know Refused HealthStyles 2004 of Colon/ Rectal Cancer Colon/ Rectal Cancer 3. Next, I m going to ask several questions about colon or rectal cancer. This is a cancer of the bowel, large intestine, or rectum. Have any of your immediate family members including your parents, brothers and sisters, and your children, ever been told by a doctor that they have colon or rectal cancer? Yes No Don t Know Refused of Colon/ Rectal Cancer Colon/ Rectal Cancer 4. What is their relationship to you? (Interviewer instructions: If respondent has multiple family members with colon or rectal cancer, please code as other and specify. If respondent reports step-parent, half-sibling, step-child with colon or rectal cancer, please code as other and specify.) Father Mother Brother Sister Son Daughter Other (specify) Perceived Risk: Colon/ Rectal Cancer Colon/ Rectal Cancer 5. Do you think your chances are of getting cancer of the colon or rectum in your lifetime? Very high High Average Low Very Low Already has colon or rectal cancer (skip 6A & B) Already has precancerous polyps (skip 6A & B) Don t know Refused Lifestyle Changes: Colon/Rectal Cancer Colon/ Rectal Cancer If Q3=YES, ask Q6A, otherwise, ask Q6B 6A. After your family member was diagnosed with colon or rectal cancer, did you make any lifestyle changes to try and prevent yourself from getting the disease, such as changing your diet, exercising more, stopping smoking, or getting more routine health tests or medical tests? Yes No Don t Know Refused 6B. If you learned that you had a family history of colon or rectal cancer, how likely would you be to make lifestyle changes to try and prevent yourself from getting the disease? Lifestyle changes might include changing your diet, exercising more, stopping smoking, and getting more routine health tests or medical tests. Would you say that you would be: Very likely to make lifestyle changes Somewhat likely Somewhat unlikely Very unlikely Neither likely or unlikely Don t know Refused

8 Behavioral Risk Factor Surveillance System 2005 OREGON DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2005) Collection of Family History Collection of Family History of NA The next questions ask about diseases or health problems that run in your family. 1. Has a doctor, nurse, or other health care provider ever asked you about your family history of illnesses or health problems? This would include a health care provider asking you to fill out a form or personally asking you about your family history of certain illnesses or health problems. Yes No (Skip to Question #3) Refused (Skip to Question # 3) 2. Has a health care provider ever asked you about your family history of diabetes, specifically? Yes No Don t know Not sure Refused Risk Assessment: Interviewer instructions for questions #3: Ask survey respondents who did not self-report having diabetes (response categories 2, 3,and 4 on the core diabetes prevalence question). 3. Has a doctor, nurse, or other health care provider ever discussed the chance of you getting diabetes? Yes No Don t know Not sure Refused Michigan Dept. of Community Health 2004 BRFSS; Oregon Dept of Human Services 2006 BRFSS Oregon Dept of Human Services 2006 BRFSS Oregon Dept of Human Services 2006 BRFSS Recommendations for Reducing Risk Multiple 4. Has a health care provider ever recommended changes in diet or exercise, to reduce your chances of getting diabetes or other illnesses like heart disease, stroke, or cancer? Yes No Don t know Not sure Refused Oregon Dept of Human Services 2006 BRFSS of 5. Do you have a parent, brother or sister, or child related by blood who has been diagnosed with diabetes by a health care provider? Do not include female relatives who only had diabetes during pregnancy. (Interviewer instructions: if respondent volunteers that they have half-brothers or half-sisters with a history of diabetes, then code as yes.) Oregon Dept of Human Services 2006 BRFSS Yes No (Skip to Question #9) No, I am adopted (if respondent volunteers without probing about adoption status) (Skip to Question #9) Don t know (Skip to Question # 9) Not sure (Skip to Question # 9) Refused (Skip to Question # 9) Stratification of risk: Based on Family History of We are interested in what age your relatives were diagnosed with diabetes other than pregnancy-related diabetes. 6. Other than during pregnancy, how many were diagnosed before the age of 20. IF NEEDED: for example, your mother, father, sister, brother, child. One Two Three More than three None Don t know/ Not sure Refused Stratification of risk: Based on Family History of 7. Other than during pregnancy, how may were diagnosed between the ages of IF NEEDED: for example, your mother, father, sister, brother, child. One Two Three More than three None Don t know/ Not sure Refused

9 Behavioral Risk Factor Surveillance System 2005 OREGON DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2005) Stratification of risk: Based on Family History of 8. Other than during pregnancy, how many were diagnosed at the age of 45 or older. IF NEEDED: for example, your mother, father, sister, brother, child. One Two Three More than three None Don t know/ Not sure Refused Worry: Interviewer instructions for questions #9-10: Ask survey respondents who did not self-report having diabetes (response categories 2,3,and 4 on the core diabetes prevalence question). 9. How worried are you that you will get diabetes in the future? Very worried Somewhat worried Slightly worried Not worried at all Don t know/not sure Refused Lifestyle Changes Multiple The next question asks about lifestyle changes you ve made to prevent disease and improve your health. 10. Have you made changes in your diet or exercise to reduce your chances of getting diabetes or other diseases like heart disease, stroke, or cancer? Yes No Don t know Not sure Refused Oregon Dept of Human Services 2006 BRFSS Oregon Department of Human Services 2006 BRFSS

10 Behavioral Risk Factor Surveillance System 2005 UTAH DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2005) Perceived Risk based on Family History Multiple 1. Do you think that a family history of chronic disease, for example heart disease, stroke, diabetes or cancer increases your risk of developing the disease? Yes No Don t know/ Not sure Refused of Chronic Disease Multiple 2. Now thinking about your family, including your grandparents, parents, brothers, sisters and children, both living and deceased. To the best of your knowledge, does one or more of the following diseases, such as heart disease, stroke, diabetes, or cancer tend to run in your family? [Interviewer note: Include blood relatives only. Do not include spouse.] Utah Department of Health 2006 BRFSS Yes No Adopted (Go to next section) Don t know Refused Risk Assessment based on Family History Recommendations based on Family History Not specified Not specified The next questions are about your family medical history. 3. Did a doctor or other health care professional ever discuss with you your risk for certain diseases or other health problems based on your family medical history? Yes No Don t know/ Not sure Refused 4. Did the doctor or health care professional make any recommendations to you based on your family medical history? Yes No Don t know/ Not sure Refused Michigan Department of Community Health 2004 BRFSS; Utah Department of Health 2006 BRFSS Michigan Department of Community Health 2004 BRFSS; Utah Department of Health 2006 BRFSS Time Willing to Complete Family History Not specified 5. How much time would you be willing to spend to complete a family medical history, either on your own or at your health care provider s office? We are not asking you to complete a family medical history now, we just want to know how much time you would be willing to spend to complete one. [Interviewer note: If respondent says he/she has already completed a family medical history, ask how then indicate how long they took to complete it.] DO NOT READ 0 (no time) 1-15 minutes minutes minutes 1-2 hours more than 2 hours Don t know/ Not sure Refused

11 3 Behavioral Risk Factor Surveillance System 2006 CONNECTICUT DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) of Heart Disease Collection of Family History of Heart Disease Lifestyle Changes Based on Family History CVD CVD CVD 1. To the best of your knowledge, do you have a parent, brother or sister, or child related by blood, who has been diagnosed with heart disease by a health care provider? Yes No Don t know/ Not sure Refused 2. Has your doctor, nurse, or other health care provider collected information from you about your family history of heart disease? Yes No Don t know/ Not sure Refused 3. If you learned that you had a family history of heart disease, how likely would you be to make lifestyle changes to try and prevent yourself from getting the disease? Lifestyle changes might include changing your diet, exercising more, stopping smoking, and getting more routine health tests or medical tests. Would you say that you would be: Very likely Somewhat likely Not likely Not sure Don t know Refused

12 Behavioral Risk Factor Surveillance System 2006 MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) Direct-to-Consumer Marketing of Genetic Tests NA 1. Some companies are advertising new ways to improve your health by testing a sample from the inside of your cheek. This sample is mailed directly to the company without involving a doctor, nurse, or other health care professional. A few weeks later, the company provides you with a personal health profile and lifestyle recommendations based on their findings. In the past 12 months, have you heard or seen anything about this type of test? Yes No (go to next section) Don t know/ Not sure (go to next section) Refused (go to next session) Direct-to-Consumer Marketing of Genetic Tests Direct-to-Consumer Marketing of Genetic Tests of Breast Cancer NA NA Breast Cancer Interviewer note: If the respondent mentions their doctor and tests that their doctor has done, please remind the respondent that these tests occur without the involvement of a doctor, nurse, or other healthcare professional. 2. Where did you hear or see something about this type of test? (Record response verbatim) 3. In the past 12 months, have you or anyone you know obtained this type of test? Yes No Don t know/ Not sure Refused 4. The next few questions are about your family history of breast cancer. Have any of your biological family members ever been diagnosed with breast cancer? Yes No (skip to Q6) Don t know adopted (Skip to Q6) Don t know/ Not sure (Skip to Q6) Refused (Skip to Q6) of Breast Cancer Breast Cancer 5. How many of your biological children, parents, brothers, or sisters were diagnosed with breast cancer? For brothers and sisters, please only include those that share your same mother and father? Help Screen: In 2004, there was an estimated one new male breast cancer diagnosis for every 100,000 men in the US. NOTE: Information about grandparents, aunts, uncles, nieces, and nephews will all be asked for in question 4. Do not include in question 2. NOTE: Do not include any cousins, great grandparents, half sisters, half brothers, or step relatives in either question 2 or 4. Number of biological relatives None (Skip to Q4) Don t know/not sure (Skip to Q4) Refused (Skip to Q4) Stratification of Risk: Based on of Breast Cancer Breast Cancer 6. And how many of them were diagnosed before the age of 50? Number of biological relatives None Don t know/not sure Refused If the respondent is not sure whether a specific relative was diagnosed before age 50, do not include them in the count. If Q3>0 or Q2>1, skip to Q6.

13 Behavioral Risk Factor Surveillance System 2006 MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) Stratification of Risk: Based on of Breast Cancer Breast Cancer 7. How many of your grandparents, aunts, uncles, nieces, or nephews were diagnosed with breast cancer? Help Screen: In 2004, there was an estimated one new male breast cancer diagnosis for every 100,000 men in the US. NOTE: Do not include any cousins, great grandparents, half sisters, half brothers, or step relatives in either question 2 or question 4. Number of biological relatives None (Skip to Q6) Don t know/not sure (Skip to Q6) Refused (Skip to Q6) Stratification of Risk: Based on of Breast Cancer Breast Cancer Diagnosis Breast Cancer 8. And how many of them were diagnosed before the age of 50? Number of biological relatives None Don t know/not sure Refused If the respondent is not sure whether a specific relative was diagnosed before age 50, do not include them in the count. Breast Cancer 9. Have you ever been diagnosed with breast cancer? Yes No Don t know/ Not sure Refused

14 10 Behavioral Risk Factor Surveillance System 2006 OREGON DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) Perceived Risk: Interviewer instructions for questions #1-2: Ask survey respondents who did not self-report having diabetes (response categories 2,3,and 4 on the core diabetes prevalence question). 1. How likely do you think it is that you will get diabetes in the future? (2-4) Very likely Somewhat likely Slightly likely Not likely Not sure/ Don t know Refused Worry: 2. How worried are you that you will get diabetes in the future? Very worried Somewhat worried Slightly worried Not worried at all Not sure/ Don t know Refused Oregon Department of Human Services 2005 BRFSS Collection of Not specified The next questions ask about illnesses or health problems that run in your family. 3. Has a doctor, nurse, or other health care provider ever asked you about your family history of illnesses or health problems? This would include a health care provider asking you to fill out a form or personally asking you about your family history of certain illnesses or health problems. Oregon Department of Human Services 2005 BRFSS Yes No (Skip to Question #5) Don t know/ Not sure (skip to Question # 5) Refused (skip to Question # 5) Collection of of 4. Has a health care provider ever asked you about your family history of diabetes, specifically? This would include a health care provider asking you to fill out a form or personally asking you about your family history of diabetes. Yes No Don t know/ Not sure Refused Oregon Department of Human Services 2005 BRFSS Risk Assessment: Interviewer instructions for questions #5, 6, 7: Ask survey respondents who did not self-report having diabetes (response categories 2, 3,and 4 on the core diabetes prevalence question). 5. Has a doctor, nurse, or other health care provider ever discussed the chance of you getting diabetes? Oregon Department of Human Services 2005 BRFSS Yes No Don t know/ Not sure Refused Screening by Health Care Providers 6. Glucose or sugar is a substance found in your blood. Have you ever had your blood glucose or sugar tested by a health care provider to see if you have diabetes? Yes Yes, but female only checked during pregnancy No (Skip to #8) Not sure/ Don t know (Skip to #8) Refused (Skip to #8) Screening by Health Care Providers 7. When was the last time your blood glucose or sugar level was measured by a health care provider? Within the past year (1 to 12 months ago) Within the past 3 years (1 to 3 years ago) Over three years ago Not sure/ Don t know Refused

15 Behavioral Risk Factor Surveillance System OREGON DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) Recommendations for Reducing Risk of Prevalence Multiple 8. Has a health care provider ever recommended making changes in your eating habits or physical activity to reduce your chances of getting diabetes or other illnesses like heart disease, stroke, or cancer? Yes No Don t know/ Not sure Refused 9. Thinking of your close relatives, do you have a parent, brother or sister, or child related by blood who has been diagnosed with diabetes by a health care provider? Do not include female relatives who only had diabetes during pregnancy. (Interviewer instructions: if respondent volunteers that they have half-brothers or half-sisters with a history of diabetes, then code as yes.) Yes No (Skip to Question #9) No, I am adopted (if respondent volunteers without probing about adoption status) (Skip to Question #9) Don t know/ Not sure (Skip to Question # 9) Refused (Skip to Question # 9) Oregon Department of Human Services 2005 BRFSS Oregon Department of Human Services 2005 BRFSS Lifestyle Changes Multiple The next question asks about lifestyle changes you ve made to prevent disease and improve your health. 10. Have you made changes in your diet or exercise to reduce your chances of getting diabetes or other diseases like heart disease, stroke, or cancer? Oregon Department of Human Services 2005 BRFSS Yes No Don t know/ Not sure Refused Genetics Knowledge The next questions ask you about your opinion about medical information and health conditions. 11. Do you think that most cases of diabetes are caused by? Genes or DNA (Interview instructions: If respondent doesn t know what genes or DNA are read: for example, health traits that are passed down from parents to children.) Lifestyle (Interviewer instructions: If respondent doesn t know what lifestyle is, read: for example, habits like exercising, eating or smoking) Combination of genes and lifestyle None of the above Don t know/ Not sure (Interviewer instructions: Read this option out loud) Refused Direct-to- Consumer Marketing of Genetic Tests 12. Some companies are offering genetic tests of your DNA that are advertised to improve your health and prevent disease. You can order these tests directly, without the involvement of a healthcare provider. Have you ever heard about these tests? Yes No (skip to next section) Don t know/ Not sure (skip to next section) Refused (skip to next section) Utah Department of Health 2006 BRFSS Direct-to- Consumer Marketing of Genetic Tests 13. Have you ever used any of these tests? Yes No (skip to next section) Don t know/ Not sure (skip to next section) Refused (skip to next section)

16 12 Behavioral Risk Factor Surveillance System 2006 UTAH DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) of Chronic Disease Multiple 1. Now think about your immediate family including your grandparents, parents, brothers, sisters and children, both living and deceased. To the best of your knowledge, does one or more chronic disease, such as heart disease, stroke, diabetes, or cancer tend to run in your family? (Interviewer Note: Includes blood relatives only. Does not include spouse.) Yes No Adopted (Skip to Question 7) Don t know/ Not sure Refused Utah Department of Health BRFSS 2005 of Asthma Asthma 2. Have any of your immediate family members ever been told by a doctor, nurse, or other health professional that they had asthma? (Interviewer Note: Immediate family members include grandparents, parents, brothers, sisters and children, both living and deceased. Only blood relatives.) Yes No Don t know/ Not sure Refused Risk Assessment based on Recommendations based on : Importance Chronic Disease Chronic Disease 3. The next questions are about your family medical history. Has a doctor or other health care professional ever discussed with you your risk for certain diseases or other health problems based on your family medical history? Yes No Don t know/ Not sure Refused 4. Has a doctor or other health care professional ever made any recommendations to you based on your family medical history? Yes No Don t know/ Not sure Refused 5. In the past year, have you read or heard about the importance of knowing your family s health history? Yes No Don t know/ Not sure Refused Utah Department of Health 2005 BRFSS; Michigan Department of Community Health 2004 BRFSS Utah Department of Health 2005 BRFS; Michigan Department of Community Health 2004 BRFSS Collection of from Relatives NA 6. Have you ever actively collected health information from your relatives for the purpose of developing a family health history? Yes No (skip to Question 7) Don t know/ Not sure (skip to Question 7) Refused (skip to Question 7) Michigan Department of Community Health 2005 BRFSS: 2004 Healthstyles Sharing of with Health Care Providers NA 7. Have you shared the information you collected on your family s health history with a doctor, nurse, or other health care professional? Yes (Skip to Question 7 No Don t know/ Not sure (skip to Question 7) Refused (skip to Question 7)

17 Behavioral Risk Factor Surveillance System UTAH DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2006) Sharing of with Health Care Providers 8. Why have you not shared your family s health history with a medical professional? Mark all that apply. Do not read: Do not have a family history It s not important Confidential, not to be shared outside the family Not yet, but I plan to in the future Worried it may affect my job Worried it may affect my ability to get health insurance Worried itmay affect my ability to get life insurance Other (write in) Don t know/not sure Refused Direct-to- Consumer Marketing of Genetic Tests 9. Some companies are offering genetic tests of your DNA that are advertised to improve your health and prevent disease. You can order these tests directly, without the involvement of a healthcare provider. Have you heard about these tests? Yes No Don t know/ Not sure Refused Oregon Department of Human Services 2006 BRFSS

18 14 4 Behavioral Risk Factor Surveillance System 2007 MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2007) Sudden Cardiac Death 1. Next, I m going to ask about sudden cardiac death, or sudden unexplained death. This occurs when a young, apparently healthy person dies suddenly from a cardiac arrest or from an unknown cause.how many of your biological family members have had a sudden cardiac death, or sudden unexplained death, between the ages of 1 and 39? NOTES: Do not include spouses or infants less than one year. Do not include drug-related deaths, traumatic deaths (such as car crashes), suicides, homicides, or individuals who had a long illness (cardiac or otherwise). Do include all biological family members (parents, siblings, half-siblings, children, aunts, uncles, cousins, grandparents, grandchildren, great grandparents, great grandchildren, great aunts and uncles, etc.) Record number of sudden cardiac deaths 88 None Go to Q Don t know Go to Q Refused Go to Q34.1 Verification: If response to Q33.1 > 2, verify with You ve just indicated that you have [insert response] biological family members who have had a sudden cardiac death, or sudden unexplained death, between the ages of 1 and 39. Is this correct?

19 Behavioral Risk Factor Surveillance System MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2007) of Sudden Cardiac Death Sudden Cardiac Death 2. What was their relationship to you? NOTE: If respondent reports multiple family members, please code as other and specify. If respondent reports spouse, go back and recode Q 1=2. 1 Mother or father 2 Brother or sister 3 Half-brother or -sister 4 Son or daughter 5 Aunt or uncle 6 Cousin 7 Grandparent 8 Grandchild 9 Great grandparent 10 Great grandchild 11 Great uncle or aunt 12 Other (specify) 77 Don t know 99 Refused

20 16 Behavioral Risk Factor Surveillance System 2007 OREGON DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2007) Perceived Risk: Heart Disease/ Stroke Heart Disease Interviewer instructions for questions #1: Ask survey respondents who did not self-report having heart disease or stroke. (If response categories are 1 for any of the core cardiovascular disease prevalence question, skip this question.) 1. How likely do you think it is that you will get heart disease or stroke in the future? By heart disease we mean heart attack, coronary heart disease, angina, or decreased blood flow to the heart. (2-4) Very likely Somewhat likely Not very likely Not at all likely Don t know/ Not sure Refused Collection of Not Specified The next questions ask about illnesses or health problems that run in your family. 2. Has a doctor, nurse, or other health care provider ever asked you about your family history of illnesses or health problems? This would include a health care provider asking you to fill out a form or personally asking you about your family history of certain illnesses or health problems. Yes No (skip to Question #4) Don t know/ Not sure (skip to Question #4) Refused (skip to Question #4) Oregon Department of Human Services 2005 BRFSS; Oregon Department of Human Services 2006 BRFSS Collection of Heart Disease/ Stroke 3. Has a health care provider ever asked you about your family history of heart disease or stroke, specifically? This would include a health care provider asking you to fill out a form or personally asking you about your family history of heart disease. If needed: By heart disease we mean heart attack, angina, coronary heart disease, or decreased blood flow to the heart. Yes No Don t know/ Not sure Refused Risk Assessment: Heart Disease/Stroke Heart Disease/ Stroke Interviewer instructions for questions #4: Ask survey respondents who did not self-report having heart disease or stroke. (If response categories are 1 for any of the core cardiovascular disease prevalence questions, skip this question.) 4. Has a doctor, nurse, or other health care provider ever discussed the chance of you getting heart disease or stroke? If needed: By heart disease we mean heart attack, coronary heart disease, angina, or decreased blood flow to the heart. Yes No Don t know/ Not sure Refused Recommendations for Reducing Heart Disease/Stroke Risk Multiple 5. Has a health care provider ever recommended making changes in your eating habits or physical activity to reduce your chances of getting diseases like heart disease or stroke? Yes No Don t know/ Not sure Refused

21 Behavioral Risk Factor Surveillance System OREGON DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2007) of Heart Disease/Stroke Prevalence Heart Disease/ Stroke 6. Thinking of your close blood relatives, do you have a parent, brother, sister, or child who has been diagnosed with heart disease or stroke by a health care provider? If needed: By heart disease we mean heart attack, coronary heart disease, angina, or decreased blood flow to the heart. If respondent volunteers that they have half-brothers or half-sisters with a history of heart disease, then code 1, Yes. Yes No No, I am adopted (IF RESPONDENT VOLUNTEERS) Don t know/ Not sure Refused Lifestyle Changes Heart Disease/ Stroke Interviewer instructions for questions #7: Ask survey respondents who did not self-report having heart disease or stroke. (If response categories are 1 for any of the core cardiovascular disease prevalence questions, skip this question.) The next question asks about lifestyle changes you ve made to prevent disease and improve your health. 7. Have you made changes in your eating habits or physical activity to reduce your chances of getting diseases like heart disease or stroke? Yes No Don t know/ Not sure Refused Direct-to- Consumer Marketing of Genetic Tests 13. Some companies are offering genetic tests of your DNA that are advertised to improve your health and prevent disease. You can order these tests directly, without the involvement of a healthcare provider. Have you ever heard about these tests? Yes No (skip to next section) Don t know/ Not sure (skip to next section) Refused (skip to next section) Utah Department of Health 2006 BRFSS; Oregon Department of Human Services 2006 BRFSS Direct-to- Consumer Marketing of Genetic Tests 13. Have you ever used any of these tests? Yes No (skip to next section) Don t know/ Not sure (skip to next section) Refused (skip to next section) Oregon Department of Human Services 2006 BRFSS

22 18 Behavioral Risk Factor Surveillance System 2007 UTAH DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2007) of Chronic Disease Multiple 1. Now think about your immediate family including your grandparents, parents, brothers, sisters and children, both living and deceased. To the best of your knowledge, does one or more chronic disease, such as heart disease, stroke, diabetes, or cancer tend to run in your family? (Interviewer Note: Includes blood relatives only. Does not include spouse.) Yes No No, adopted (Skip to Question 7) Don t know/ Not sure Refused Utah Department of Health BRFSS 2005; Utah Department of Health BRFSS 2006 of 2. Have any of your immediate family members ever been told by a doctor, nurse, or other health professional that they had diabetes? Do not include a female relative who only had diabetes during pregnancy. (Interviewer Note: Immediate family members include grandparents, parents, brothers, sisters and children, both living and deceased. Only blood relatives.) Yes No Don t know/ Not sure Refused : Importance 3. In the past year, have you read or heard about the importance of knowing your family s health history? Yes No Don t know/ Not sure Refused Utah Department of Health 2006 BRFSS Collection of from Relatives Sharing of with Health Care Providers NA NA 4. Have you ever actively collected health information from your relatives for the purpose of developing a family health history? Yes No (Skip to Question 7) Don t know/ Not sure (Skip to Question 7) Refused (Skip to Question 7) 5. Have you shared the information you collected on your family s health history with a doctor, nurse, or other health care professional? Yes (Skip to Question 7 No Don t know/ Not sure (Skip to Question 7) Refused (Skip to Question 7) Michigan Department of Community Health 2005 BRFSS; 2004 Healthstyles; Utah Department of Health 2006 BRFSS Utah Department of Health 2006 BRFSS Sharing of with Health Care Providers 6. Why have you not shared your family s health history with a medical professional? Mark all that apply. Do not read: Do not have a family history Worried it may affect my ability to get health insurance It s not important Worried it may affect my ability to get life insurance Confidential, not to be shared outside the family Other (write in) Not yet, but I plan to in the future Don t know/not sure Worried it may affect my job Refused Utah Department of Health 2006 BRFSS Direct-to- Consumer Marketing of Genetic Tests 7. Some companies are offering genetic tests of your DNA that are advertised to improve your health and prevent disease. You can order these tests directly, without the involvement of a healthcare provider. Have you heard about these tests? Yes No Don t know/ Not sure Refused Oregon Department of Human Services 2006 BRFSS; Utah Department of Health 2006 BRFSS

23 Behavioral Risk Factor Surveillance System VERMONT DEPARTMENT OF COMMUNITY HEALTH (BRFSS 2007) of Colon/Rectal Cancer Colorectal Cancer 1. Has a doctor or other health care professional ever given you or any member of your immediate family a diagnosis of colon or rectal cancer? (To interviewer: immediate family members of interest are blood relatives and include parents, siblings, and children. Do not include spouse/partner. Colon or rectal cancer refers to a cancer of the bowel, large intestine, or rectum) (pick best answer based on response, probe only if necessary) 1 just a family member 2 just respondent 3 both 4 no, no one 7 don t know 9 refused

24 20 5 CDC HealthStyles CDC HEALTHSTYLES (2000) Genes & Infection NA 1. A person s genes can make them more likely to get infections such as the flu. 1 is Strongly Disagree 5 is Strongly Agree Gene vs. Behavior vs. Environment Genes & Side Effects from Medicine Genes & Susceptibility NA NA Diseases caused by smoking 1. A person s health is determined more by their genes than by their behavior or their environment. 1 is Strongly Disagree 5 is Strongly Agree 5. A person s genes can make them more likely to have side effects from drugs and medications. 1 is Strongly Disagree 5 is Strongly Agree 6. A person s genes can make them more likely to develop diseases caused by cigarette smoking. 1 is Strongly Disagree 5 is Strongly Agree Genes & Susceptibility Diseases caused by environmental exposures such as pesticides 7. A person s genes can make them more likely to develop illness from environmental exposures such as pesticides. 1 is Strongly Disagree 5 is Strongly Agree Genes & health NA 8. Discoveries about human genes will lead to better health. 1 is Strongly Disagree 5 is Strongly Agree

25 CDC HealthStyles CDC HEALTHSTYLES (2001) of Asthma & Heart Disease (Mother) Asthma, CVD 1. Has your biological mother ever had any of the following conditions? ( X all that apply) Asthma : Yes No Not sure Heart Disease: Yes No Not sure of Asthma & Heart Disease (Father) of Asthma & Heart Disease (Brothers) of Asthma & Heart Disease (Sisters) Asthma, CVD Asthma, CVD Asthma, CVD 2. Has your biological father ever had any of the following conditions ( X all that apply) Asthma : Yes No Not sure Heart Disease: Yes No Not sure 3. Have any of your biological brothers ever had any of the following conditions ( X all that apply) Asthma : Yes No Not sure No brothers Heart Disease: Yes No Not sure No brothers 4. Have any of your biological sisters ever had any of the following conditions ( X all that apply) Asthma : Yes No Not sure No sisters Heart Disease: Yes No Not sure No sisters

26 22 CDC HealthStyles CDC HEALTHSTYLES (2002) : Importance NA 1. It is important for my own health to know the history of diseases that run in my family (like cancer, diabetes, or heart disease) 1 is Strongly Disagree 5 is Strongly Agree Concern due to NA 2. I am concerned about my own health because one of my immediate blood relatives (parents, siblings, or children) has had cancer, diabetes, or heart disease. 1 is Strongly Disagree 5 is Strongly Agree Disease Risk due to Family History NA 3. Has your doctor every told you that you have an increased risk for a disease (like cancer, diabetes, or heart disease) because it runs in your family? Yes No Not sure Not Applicable Diet Change due to Family History NA 4. Have you changed your diet to help reduce your risk of a disease that runs in your family (like cancer, diabetes, or heart disease)? Yes No Not sure Not Applicable Exercise Change due to NA 5. Have you changed your exercise habits to help reduce your risk of a disease that runs in your family (like cancer, diabetes, or heart disease)? Yes No Not sure Not Applicable

27 CDC HealthStyles CDC HEALTHSTYLES (2003) Coronary Heart Disease: Self CHD 1. Have you ever been diagnosed by your doctor as having coronary heart disease (e.g., myocardial infarction, coronary bypass graft surgery or angioplasty)? Yes, at or before age 60 Yes, after age 60 No Don t Know Coronary Heart Disease: Mother CHD 2. Has your mother ever been diagnosed as having coronary heart disease? Yes, at or before age 60 Yes, after age 60 No Don t Know Coronary Heart Disease: Father CHD 3. Has your father ever been diagnosed as having coronary heart disease? Yes, at or before age 60 Yes, after age 60 No Don t Know Stroke/TIA: Self Stroke/TIA 4. Have you ever been diagnosed by your doctor as having a stroke/tia (mini stroke)? Yes, at or before age 60 Yes, after age 60 No Don t Know HealthStyles 2005 Stroke/TIA: Mother Stroke/TIA 5. Has your mother ever been diagnosed as having a stroke/tia (mini stroke)? Yes, at or before age 60 Yes, after age 60 No Don t Know HealthStyles 2005 Stroke/TIA: Father Stroke/TIA 6. Has your father ever been diagnosed as having a stroke/tia (mini stroke)? Yes, at or before age 60 Yes, after age 60 No Don t Know HealthStyles 2005 CHD: Siblings (<60 yrs) CHD: Siblings (>60 yrs) Stroke/TIA 7. How many of your brothers and sisters have been diagnosed with coronary heart disease at or before age 60? None One Two or more Don t Know CHD 8. How many of your brothers and sisters have been diagnosed with coronary heart disease after age 60? None Don t Know CHD: Maternal Side (<60 yrs) CHD: Maternal Side (>60 yrs) CHD: Paternal Side (<60 yrs) CHD CHD CHD 9. How many of your mother s relatives (her sisters, brothers and parents) were diagnosed with coronary heart disease at or before age 60? None One Two or more Don t Know 10. How many of your mother s relatives (her sisters, brothers and parents) were diagnosed with coronary heart disease after age 60? None One Two or more Don t Know 11. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with coronary heart disease at or before age 60? None One Two or more Don t Know

28 24 CDC HealthStyles CDC HEALTHSTYLES (2003) CHD: Paternal Side (>60 yrs) CHD 12. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with coronary heart disease after age 60? None One Two or more Don t Know Stoke/TIA: Siblings (<60 yrs) Stroke/TIA: Siblings (>60 yrs) Stroke/TIA: Maternal Side (<60 yrs) Stroke/TIA 13. How many of your brothers and sisters have been diagnosed with stroke/tia (mini stroke) at or before age 60? None One Two or more Don t Know Stroke/TIA 14. How many of your brothers and sisters have been diagnosed with stroke/tia (mini stroke) after age 60? Stoke/TIA None One Two or more Don t Know 15. How many of your mother s relatives (her sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) at or before age 60? None One Two or more Don t Know HealthStyles 2005 (responses different) HealthStyles 2005 (responses different) HealthStyles 2005 (responses different) Stroke/TIA: Maternal Side (>60 yrs) Stroke/TIA 16. How many of your mother s relatives (her sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) after age 60? None One Two or more Don t Know HealthStyles 2005 (responses different) Stroke/TIA: Paternal Side (<60 yrs) Stroke/TIA 17. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) at or before age 60? None One Two or more Don t Know HealthStyles 2005 (responses different) Stroke/TIA: Paternal Side (>60 yrs) Stroke/TIA 18. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) after age 60? None One Two or more Don t Know HealthStyles 2005 (responses different)

29 CDC HealthStyles CDC HEALTHSTYLES (2004) Risk Assessment Based on Lifestyle Changes to Reduce Risk of Type 2 : Self 1. Has your doctor ever told you that you have a greater chance of getting diabetes because it runs in your family? Yes No Not sure Not Applicable 2. Have you made any lifestyle changes, like diet or exercise, to reduce your chances of getting diabetes? Yes No Not sure Not Applicable 3. Have you ever been diagnosed by your doctor as having type 2 diabetes? Yes No Not sure Not Applicable Type 2 : Mother 3. Has your mother ever been diagnosed as having type 2 diabetes? Yes No Not sure Not Applicable Type 2 : Father 4. Has your father ever been diagnosed as having type 2 diabetes? Yes No Not sure Not Applicable Collection of Type 2 : Siblings NA 5. Have you ever actively collected health information from your relatives for purposes of developing a family health history? Yes No Not sure Not Applicable 6. How many of your brothers and sisters have been diagnosed with type 2 diabetes? None One Two Three More than Three Don t Know Michigan Department of Community Health 2005 BRFSS; Utah Department of Health 2006 BRFSS; Healthstyles 2005 Type 2 : Maternal Side 7. How many of your mother s relatives (her sisters, brothers, and parents) were diagnosed with type 2 diabetes? None One Two Three More than Three Don t Know Type 2 : Paternal Side 8. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with type 2 diabetes? None One Two Three More than Three Don t Know : Importance 9. How important do you think knowledge of your family s health history is to your personal health? Very Important Somewhat Important Not at All Important Not Sure Michigan Department of Community Health 2005 BRFSS

30 26 CDC HealthStyles CDC HEALTHSTYLES (2005) Stroke/TIA: Self CHD 1. Have you ever been diagnosed by your doctor as having a stroke/tia (mini stroke)? Yes, at or before age 60 Yes, after age 60 No Don t Know HealthStyles 2003 Stroke/TIA: Mother Stroke/TIA 2. Has your mother ever been diagnosed as having a stroke/tia (mini stroke)? Yes, at or before age 60 Yes, after age 60 No Don t Know HealthStyles 2003 Stroke/TIA: Father Stroke/TIA 3. Has your father ever been diagnoses as having a stroke/tia (mini stroke)? Yes, at or before age 60 Yes, after age 60 No Don t Know HealthStyles 2003 Stoke/TIA: Siblings (<60 yrs) Stroke/TIA 4. How many of your brothers and sisters have been diagnosed with stroke/tia (mini stroke) at or before age 60? None One Two Three More than 3 Don t Know HealthStyles 2003 (responses different) Stroke/TIA: Siblings (>60 yrs) Stroke/TIA 5. How many of your brothers and sisters have been diagnosed with stroke/tia (mini stroke) after age 60? None One Two Three More than 3 Don t Know HealthStyles 2003 (responses different) Stroke/TIA: Maternal Side (<60 yrs) Stoke/TIA 6. How many of your mother s relatives (her sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) at or before age 60? None One Two Three More than 3 Don t Know HealthStyles 2003 (responses different) Stroke/TIA: Maternal Side (>60 yrs) Stroke/TIA 7. How many of your mother s relatives (her sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) after age 60? None One Two Three More than 3 Don t Know HealthStyles 2003 (responses different) Stroke/TIA: Paternal Side (<60 yrs) Stroke/TIA 8. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) at or before age 60? None One Two Three More than 3 Don t Know HealthStyles 2003 (responses different) Stroke/TIA: Paternal Side (>60 yrs) Stroke/TIA 9. How many of your father s relatives (his sisters, brothers and parents) were diagnosed with stroke/tia (mini stroke) after age 60? None One Two Three More than 3 Don t Know HealthStyles 2003 (responses different)

31 CDC HealthStyles CDC HEALTHSTYLES (2005) : Importance 10. In the past year, have you read or heard about the importance of knowing your family s health history? No Not Sure Yes If YES, from which of the following sources did you read or hear anything about the importance of knowing your family history? ( X all that apply) Newspaper Television Radio Magazine Internet Health Professional Friend Family Member Other Collection of Information 11. Have you ever actively collected health information from your relatives for the purposes of developing a family history? No Not Sure Not Applicable Yes If YES, have you shared the family health information you collected with a health professional? No Yes Not yet, but I plan to in the future Michigan Department of Community Health 2005 BRFSS; Utah Department of Health 2006 BRFSS; HealthStyles 2004

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