"U.S. Surgeon General's Family History Initiative"


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  • USPSTF Adults General Population Screen M > 34, F > 45 Screen M 20 - 35, F 20 - 45 if RF Treat if presence of RF Heart disease in M < 50, F < 60 = Risk factor ICSI Children and Adolescents (age 2 - 19) No screening unless 1 st ° Relative with coronary heart disease: M < 55, F < 65 or cholesterol > 300dL If family history positive Screen with non-fasting total cholesterol NCEP III Adults 1 st ° Relative with coronary heart disease: M < 55, F < 65 = major risk factor Family history as a single risk factor favors use of drugs to modify LDL
  • The user starts by putting in her own name and basic information. Race can be important for some inherited illnesses. In this case, this is a 30 year old woman.
  • The profile continues with the user filling in common illnesses. In this case, she’s a healthy young woman.
  • The tool then helps you gather information about your family. It assumes everyone has a mother and a father and that the parents had mothers and fathers – grandparents – so they are filled in automatically.
  • The tool then walks the user through filling in information for each relative.
  • When all the information is filled in for all the relatives, the tool creates a portrait of the family in the form of a genetic pedigree. This shows what diseases were suffered by parents and grandparents, and that suggests prevention steps that should probably be taken for Jill and her children.
  • The tool also produces a printed report. There are two pages shown together here. The point is that users should print this out and take the pedigree and the report to their doctor for a consultation.
  • "U.S. Surgeon General's Family History Initiative"

    2. 2. Why Family History? <ul><li>Almost every disease is due to interactions of multiple inherited (“genetic”) factors and non-genetic (“environmental”) factors. </li></ul>
    3. 3. > 9 of the 10 Leading Causes of Death Have Genetic Components <ul><li>1. Heart disease (28.9% of U.S. deaths in ‘01) </li></ul><ul><li>2. Cancer (22.9%) </li></ul><ul><li>3. Cerebrovascular diseases (6.8%) </li></ul><ul><li>4. Chronic lower respiratory dis. (5.1%) </li></ul><ul><li>5. Injury (4.0%) </li></ul><ul><li>6. Diabetes (2.9%) </li></ul><ul><li>7. Pneumonia/Influenza (2.6%) </li></ul><ul><li>8. Alzheimer disease (2.2%) </li></ul><ul><li>9. Kidney disease (1.6%) </li></ul><ul><li>10. Septicemia (1.3%) </li></ul>
    4. 4. Indeed, ALL Diseases Have a Genetic Component <ul><li>In causation </li></ul><ul><li>In how each individual responds physiologically to the disease </li></ul><ul><li>In how each individual reacts to drugs used to treat them </li></ul>
    6. 6. Family History Changes Diagnosis of Many Diseases <ul><li>It is the key to presymptomatic diagnosis </li></ul><ul><li>If someone is sick, it informs the differential diagnosis – what diagnoses to consider </li></ul><ul><li>It guides testing to nail down the diagnosis </li></ul>
    7. 7. Family History Changes Population Screening Guidelines <ul><li>Visual Impairment </li></ul><ul><li>Hearing Impairment </li></ul><ul><li>Thyroid Disease </li></ul><ul><li>Thromboembolism </li></ul><ul><li>Hypertension </li></ul><ul><li>Diabetes </li></ul><ul><li>Coronary Artery Disease </li></ul><ul><li>Dyslipidemia </li></ul><ul><li>Breast Cancer </li></ul><ul><li>Colon Cancer </li></ul><ul><li>Prostate Cancer </li></ul><ul><li>Liver Cancer </li></ul><ul><li>Hip Dysplasia </li></ul><ul><li>Iron Def Anemia </li></ul><ul><li>Osteoporosis </li></ul><ul><li>Cardiomyopathy </li></ul>
    8. 8. Family History Changes Management of Common Disease <ul><li>Coronary Heart Disease </li></ul><ul><li>Hypertension </li></ul><ul><li>Heart Failure </li></ul><ul><li>Emphysema & COPD </li></ul><ul><li>Syncope </li></ul><ul><li>Pancreatitis </li></ul><ul><li>Diabetes </li></ul><ul><li>Thromboembolism </li></ul><ul><li>Thyroid Cancer </li></ul><ul><li>Breast Cancer </li></ul><ul><li>Colon Cancer </li></ul><ul><li>Urticaria </li></ul><ul><li>Developmental Delay </li></ul><ul><li>Pancreatitis </li></ul>
    9. 9. But Do People Care About Family History? <ul><li>In 2004, Research!America and Parade conducted a nationwide survey of 1,000 individuals: </li></ul><ul><ul><li>65% have found health information on the Internet to be very or somewhat helpful </li></ul></ul><ul><ul><li>But, 96% thought, in thinking of their own health, that knowledge of family health history was very or somewhat important </li></ul></ul>
    10. 10. But Do People Care About Family History? <ul><li>In a CDC survey of 4,000+ individuals: </li></ul><ul><ul><li>97% thought that knowledge of family health history was important </li></ul></ul><ul><ul><li>But, only 30% had actually ever collected health information from relatives to develop a family health history. </li></ul></ul>
    11. 11. In the “Age of Genomics,” Why Family History? <ul><li>Although we will gain important new genomic tools, family history will remain highly relevant for years. </li></ul><ul><li>Family history helps predict risk for such varied health concerns as single gene disorders, chromosomal disorders, heart disease, colorectal cancer, breast cancer, ovarian cancer, osteoporosis, atopy or asthma, type 2 diabetes, suicide, etc. </li></ul><ul><li>Yet, many people are unaware of relatives’ medical histories, and many health professionals continue to underutilize this information in advising patients on how to maintain good health. </li></ul>
    12. 12. If Family History Is So Useful, Why Don’t Health Professionals Use It More Consistently & Effectively? <ul><li>Clinicians often underestimate the utility of the family history (tree) </li></ul><ul><ul><li>Requires better teaching and more pervasive role modeling of effective use of the family history </li></ul></ul><ul><li>Not enough time to obtain, organize, and analyze family history information </li></ul><ul><ul><li>Requires creative approaches to the family history that demand less practitioner time </li></ul></ul>
    13. 13. So, What Can We Do?
    14. 14. U.S. Surgeon General’s Family History Initiative
    15. 15. Goals of the U.S. Surgeon General’s Family History Initiative <ul><li>Increase the American public’s awareness of the importance of family history in health; </li></ul><ul><li>Give the American public tools to gather, understand, evaluate, and use family history to improve their health; </li></ul><ul><li>Increase the awareness of health professionals about the importance of family history; </li></ul><ul><li>Give health professionals tools to gather, evaluate, and use family history information; and to communicate with their patients about family history; </li></ul><ul><li>Increase genomics and health literacy; </li></ul><ul><li>Prepare both the American public and their health professionals for the coming era in which genomics will be an integral part of regular health care. </li></ul>
    16. 16. So, What Can We Do? www.hhs.gov/familyhistory
    17. 18. Available in Both English and Spanish <ul><li>To order print versions: </li></ul><ul><ul><li>Call 1-888-275-4772 </li></ul></ul><ul><ul><li>Or go to: www.ask.hrsa.gov </li></ul></ul><ul><li>To access the computer-based version: </li></ul><ul><ul><li>Go to: www.hhs.gov/familyhistory </li></ul></ul>
    18. 27. Next Steps <ul><li>Improve “My Family Health Portrait” – a new and much improved version will be on the web in Fall 2005 </li></ul><ul><li>Continued media attention and outreach </li></ul><ul><li>New projects and uses by any and all </li></ul><ul><li>Make Thanksgiving the Annual Family History Day </li></ul>
    19. 28. Let’s Make Thanksgiving Day Annual National Family History Day
    20. 29. For More Information <ul><li>Visit The U.S. Surgeon General’s </li></ul><ul><li>Family History Website at </li></ul><ul><li>www.hhs.gov/familyhistory </li></ul><ul><li>or </li></ul><ul><li>Contact Susan Vasquez at </li></ul><ul><li>[email_address] </li></ul>