Family Health History Toolkit - Utah Department of Health - Utah.gov

Family Health History Toolkit - Utah Department of Health - Utah.gov

Family Health History Toolkit - Utah Department of Health - Utah.gov


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health.utah.<strong>gov</strong>/ genomicsOne-on-one approachIf some <strong>of</strong> your family members don’t want to talk about your family healthhistory, try talking one–on–one with them. Start with those family memberswho already have a health problem that runs in your family. Help them makethe link between their own health and the rest <strong>of</strong> your family’s health, includingyounger family members who may not have developed the problemyet. Explain that a family history can increase the chance that other familymembers may get the same problem. But lifestyle and screening choices cankeep you as healthy as possible.Use the “Talk to your family” box to guide the conversation.Talk toyour familyI know that you have (for example, diabetes). I learned that diabetescan run in families and that this can increase my risk <strong>of</strong> gettingdiabetes, too. Can I ask you some questions about your diabetes?When did your diabetes start?Do you know if other family members had diabetes? Did theyhave other health problems?How are you managing or treating your diabetes? (For example,medications, lifestyle choices, regular tests, etc.)What other choices have you made to stay healthy?Did you know these health problems run in families?Alzheimer’s disease or dementiaArthritisAsthmaBirth defectsCancers (breast, colon, lung, prostate, ovarian, and others)DiabetesDepressionHeart disease or sudden heart attackHigh blood pressure and high cholesterolPregnancy losses (stillbirths and miscarriages)Stroke or blood clots

WRITE IT DOWNDon’t forget what your family talked about – write it down! Use the <strong>Health</strong><strong>Family</strong> Tree to record your family health history. The <strong>Health</strong> <strong>Family</strong> Tree wasused in high schools for 20 years and helped families learn about their familyhealth history. Or come up your own way <strong>of</strong> keeping track <strong>of</strong> what you learn.There is a box like the one below for each <strong>of</strong> your family memberson the <strong>Health</strong> <strong>Family</strong> Tree. Start with the number one box labeled“You” and fill out your health history. Then fill out a box for each <strong>of</strong>your family members. Try to fill out each box as much as you can.If you don’t know if a family member had the health problem, mark“Not Sure”. Write down the age when their health problem started;even a guess is better than leaving it blank. And write down anyother health problems your family members had even if they aren’tlisted on the box (for example, depression).family health history toolkitIn yourtoolkitOronlineathealth.utah.<strong>gov</strong>/genomics

A health problem that does not usually affect a certain gender (For example,breast cancer in a male family member)Certain combinations <strong>of</strong> health problems within a family (For example,breast and ovarian cancer or heart disease and diabetes)If you are worried about your family health history, talk to your doctor. Yourdoctor can explain your risk. He or she can also help you make choices abouttests to detect problems early. But even for families with an increased risk,steps can be taken to lower the chance <strong>of</strong> getting the health problem.family health history toolkitTalk toyour familyShare your family health history at:<strong>Family</strong> reunionsHolidaysBaby blessings or baptismsBirthdays<strong>Family</strong> parties and dinnersWeddingsChristenings and baptismsShare it withyour familymembersShare what you learnedwith your family. Callthem or send an email orletter. Help them see howyour family’s past couldaffect their future health.But remember to bemindful <strong>of</strong> familymembers who may notwant to know thisinformation.Pass on your familyhealth history to futuregenerations by keepingit updated and in a safeplace.Let us know how it wentDid your family members enjoy your new tradition?Was this toolkit helpful?We would love to hear your stories and help other families talkabout their family health history.Send us your family’s story by e-mail at genomics@utah.<strong>gov</strong>or mail it to:<strong>Utah</strong> <strong>Department</strong> <strong>of</strong> <strong>Health</strong> Genomics ProgramPO Box 142106Salt Lake City, UT 84114-2106

health.utah.<strong>gov</strong>/ genomics110 Questions to Ask Your <strong>Family</strong>1 | What traits seem to run in our family?(You don’t have to ask only about health – start with anything from your family’s blueeyes or curly hair to your height and personality – just get your family talking.)2 | Did my family members have any health problems?3 | How old were my family members when their health problem startedor was diagnosed?4 | How old were my family members when they died?(If you don’t know exact dates, ask about the approximate age at death.)5 | What were the reasons they died?(Note if the cause <strong>of</strong> death was unknown.)6 | Were there any pregnancy losses or babies born with birth defects?7 | Where were my family members born?(Ethnicity can be a risk factor for some health problems.)8 | Did any <strong>of</strong> my family members smoke? If yes, how much and for howlong?9 | What other lifestyle habits did my family members have?(For example: Did they exercise regularly? Were any overweight or extremely thin?Did any have addictive behaviors?)10 | What types <strong>of</strong> allergies did my family members have?(For example: hay fever, food or medication allergies)References:•Daus, Carol. Past Imperfect:How tracing your familymedical history can save yourlife. California: Santa MonicaPress, 1999.Make<strong>Family</strong><strong>Health</strong><strong>History</strong> aTradition•MayoClinic.com. How tocompile your family medicalhistory

Questions and AnswersBelow are answers to common questions you may have about your familyhealth history.WHY IS MY FAMILY HEALTH HISTORY IMPORTANT?<strong>Health</strong> problems that run in your family can increase your chance <strong>of</strong> developingthe problem. This is because families share their genetics, environment,lifestyles, and habits. But the good news is by knowing your family healthhistory you can make screening and lifestyle choices to lower your risk.2family health history toolkitWhat information should I collect?Collect information on close family members, like parents, brothers andsisters, and children. Then collect information on your grandparents, auntsand uncles, and cousins. Things that are important to collect include:<strong>Health</strong> problems <strong>of</strong> family membersAge when the problem started or was diagnosedAge and cause <strong>of</strong> deathLifestyle habits (smoker/nonsmoker, diet, weight, and exercise habits)Ethnic backgroundWhat health problems run in Families?A family health history can help you understand your tendency to get justabout any health problem. These health problems can run in families:Alzheimer’s disease or dementiaArthritisAsthmaBirth defectsCancer (breast, colon, lung, prostate, ovarian, and other cancers)DiabetesDepressionHeart disease or sudden heart attackOther heart problemsHigh blood pressure and high cholesterolPregnancy losses, stillbirths, and miscarriagesStroke or blood clotsHow do I know if I’m at risk for a health problem?You may have an increased risk <strong>of</strong> getting a health problem if your family has:<strong>Health</strong> problems that occur at an earlier age than expected (10 to 20years before most people get the problem)The same health problem in more than one close family memberA health problem that does not usually affect a certain gender (For example,breast cancer in a male family member)Certain combinations <strong>of</strong> health problems within a family (For example,breast and ovarian cancer or heart disease and diabetes)Make<strong>Family</strong><strong>Health</strong><strong>History</strong> aTradition

health.utah.<strong>gov</strong>/ genomicsWhat if I don’t have health problems that run inmy family?Not having a health problem in your family can be good news. But you could stilldevelop a problem because:Your lifestyle, personal health history, and environment affect your riskYou may be unaware <strong>of</strong> health problems in family membersA family member may have died young before even developing a health problemMake healthy choices no matter what your family health history is.What if I’m adopted?If you are adopted it can be harder to learn about your family health history. But youshould still ask your adoptive and birth family about their lifestyle and the placeswhere they have worked or lived. Even though you don’t share the same genes, youshare habits and environments with your family members. These can also affectyour risk <strong>of</strong> getting a health problem. You may also find health information from birthparents through the National Adoption Clearinghouse.What should I do with my family health historyafter I’ve collected it?Share your family health history with your family. Pass it on to your children andgrandchildren. By sharing this, you can work together to make healthy choices thatcould save your life. And remember to keep your family health history updated and ina safe place.Could my family health history be used to harm me?Your family health history is treated like any other medical information by yourdoctor. The HIPAA law protects your private health information, which includes yourfamily health history. In <strong>Utah</strong>, the <strong>Utah</strong> Genetic Testing Privacy Act also protects youfrom discrimination based on your genetics.Be mindful <strong>of</strong> other family members’ health information and keep it private.How do I get started?Getting started is easy! Simply talk with your family at reunions,holidays, or other family gatherings. Then write down what youlearn and share it with your family members and doctor. Use the<strong>Family</strong> <strong>Health</strong> <strong>History</strong> <strong>Toolkit</strong> to help you collect a family healthhistory.References•CDC Office <strong>of</strong> Genomics and Disease Prevention www.cdc.<strong>gov</strong>/genomics•U.S. Surgeon General <strong>Family</strong> <strong>History</strong> Initiative www.hhs.<strong>gov</strong>/familyhistory•National Society <strong>of</strong> Genetic Counselors www.nsgc.org•Daus, Carol. Past Imperfect: How tracing your family medical history cansave your life. California: Santa Monica Press, 1999.

health.utah.<strong>gov</strong>/ genomicsFuneral homes <strong>of</strong>ten assisted in recording the death certificate and obituary.Therefore, these records may have even more detail about the cause<strong>of</strong> death. Funeral programs will name relatives who participated and whosehealth information may also be important to your family.How to obtain funeral home recordsUse a directory:Online: www.funeralnet.comBook: National Yellow Book <strong>of</strong> Funeral Directors (Youngstown, Ohio:Nomis Publications. FHL book 973 U24y.) This book is arranged by state,then by town. It gives addresses, phone numbers, and other informationabout the funeral homes. Funeral directors near you should also have it.Phone them, state what you need, and ask when you can call back. Writingtakes more <strong>of</strong> their time and you have to wait longer. Please treat them likethe “golden goose” they are.OBITUARIESIn the late 1800s, newspapers began to publish obituaries on a regularbasis. Even today, it is one <strong>of</strong> the most popular sections. The cause <strong>of</strong> deathwas <strong>of</strong>ten included in earlier years, but may be masked or omitted altogethernow.How to obtain obituariesMany obituaries within the last 10 years or so can be found online.A search for “Obituaries” will find several sites.Contact public libraries in the area. If they have copies, they may searchfor a small fee.Most states have made an effort to obtain old newspapers. Try statearchives, libraries, or major universities.UNITED STATES CENSUSES<strong>Health</strong> clues from censuses, 1850–1930Beginning in 1850, censuses started giving information about every personin each household. Each census has health clues to notice, such as:The age <strong>of</strong> the mother. Children born to older women may have healthissues.A parent or child may have died. Death was more common than divorceuntil recently. Young deaths were <strong>of</strong>ten due to accidents, health issues, orgenetics.You may find a single-parent family, one parent with a different spouse,large gaps between children, and nieces, nephews, and grandchildren livingwith them.The occupation could affect health. For example, hatters worked withchemicals that affected the brain, thus the term “mad hatter.”<strong>Health</strong> clues from specific censuses1850-1880 Mortality Schedules give the date and cause <strong>of</strong> death.1850-1880, and 1910 indicate if a person was blind,

deaf, or mute.1900-1930 censuses on www.Ancestry.com allow you to search byrelationships such as “patient” and “inmate” to find residents <strong>of</strong> hospitals,orphanages, and other institutions.How to obtain census records1850-1930: Use www.Ancestry.com at the <strong>Family</strong> <strong>History</strong> Library or at a<strong>Family</strong> <strong>History</strong> Center with an Internet connection. These locations have allcensus images and every name indexes to most years.In <strong>Utah</strong>, most public libraries have a subscription to ProQuest’s Heritage-QuestOnline, which has all the census images and head-<strong>of</strong>-family indexes toseveral census years.family health history toolkitMicr<strong>of</strong>ilms <strong>of</strong> censuses and head-<strong>of</strong>-family indexes for many years are availableat the <strong>Family</strong> <strong>History</strong> Library. 1940–present: These censuses have notbeen released to the public. Since pro<strong>of</strong> <strong>of</strong> death is a requirement for obtainingcensus information on your direct line (parent, grandparent), you willalready have more health information than the census will <strong>of</strong>fer.OTHER RESOURCES<strong>Family</strong> items such as journals, religious records—even old prescriptionbottles—have clues to your family health history. Other records include hospitals,medical pr<strong>of</strong>essionals, pensions, schools, passports, insurance forms,immigration, old newspaper articles (accidents or local health concerns),military, and occupational records. The list can go on and on. Check at thereference counters for ideas on how to find some <strong>of</strong> these records.SUMMARYLiving family members are the best source for collecting your family healthhistory. They are also the ones who will benefit the most from your work.We’re already looking at these records for family history. Why not collect yourfamily’ health history as well? It may save the life <strong>of</strong> a child orgrandchild. Your family health history is your gift to the future.© 2005 by Intellectual Reserve, Inc. All Rights Reserved.No part <strong>of</strong> this document may be reprinted, posted online, or reproduced in any form forany purpose without the prior written permission <strong>of</strong> the publisher. Send all requests forsuch permission to:Copyrights and Permissions Coordinator, <strong>Family</strong> and Church <strong>History</strong> <strong>Department</strong>50 East North Temple StreetSalt Lake City, UT 84150-3400 USA

health.utah.<strong>gov</strong>/ genomics4When to See a Genetic CounselorYou may be worried about your family health history. Most people do not havea high risk for a health problem based on their family health history. But somefamilies may need to talk with a genetic counselor or other trained specialistabout their family health history. Genetic tests may also be an option. Youshould always talk to your doctor before getting any tests.Who should talk toa genetic counselor?You may need to talk to your doctor or a genetic counselor if your family has:<strong>Health</strong> problems that occur at an earlier age than expected (10 to 20years before most people get the disease)The same health problem in more than one close family memberA health problem that does not usually affect a certain gender (forexample, breast cancer in a male family member)Certain combinations <strong>of</strong> health problems within a family (for example,breast and ovarian cancer or heart disease and diabetes)Birth defects, growth or development problems, pregnancy concerns,and other known genetic conditions in the familyWhat will I learn froma genetic counselor?A genetic counselor will help you:Assess your risk for a health problem that runs in yourfamilyDiagnose a health problem and causes <strong>of</strong> itDecide if genetic testing is an optionTell you about treatment or management <strong>of</strong> the problemRefer you to support groups and resourcesMake<strong>Family</strong><strong>Health</strong><strong>History</strong> aTraditionWhere can I learn more?Huntsman Cancer Institute, www.huntsmancancer.orgTo schedule an appointment with a genetic counselor, call 801-587-9555For other questions, call 801-585-0100 or toll-free 866-275-0243Intermountain <strong>Health</strong> Care, Clinical Genetics InstituteTo talk with a genetic specialist, call 801-408-5014University <strong>of</strong> <strong>Utah</strong> HospitalTo schedule an appointment with a genetic counselor, call 801-581-7825March <strong>of</strong> Dimes, www.march<strong>of</strong>dimes.com

Fun IdeasTry these fun ideas to get your family talking about your family healthhistory.Bring as much family health history as you can to your next family gathering.This will jump-start a conversation. Then ask other family members tohelp you find missing pieces <strong>of</strong> information.Write a chapter on your family health history in your personal history.5family health history toolkitInstead <strong>of</strong> using a tablecloth, use sheets <strong>of</strong> butcher paper to cover thetable and put crayons out for everyone to color with. Write down what youknow about your family health history on the paper and then share what youwrote.Bring a copy <strong>of</strong> your family health history to your summer family reunion.Or plan time during your summer reunion to talk about your family healthhistory.Take a child or grandchild to your <strong>Family</strong> <strong>History</strong> Center to research yourfamily health history. To find a center near you visit, www.familysearch.org.Collect your family health history and give it as a Christmas or birthday gift.Pick a family member to be your “health buddy.” Then work together tolearn more about your family health history.Add a section on family health history to your family newsletter.Add your family health history to your baby’s keepsake book. Or if youhave a new grandchild, give a copy <strong>of</strong> your family health history to his or herparents.Write a letter or send an e-mail to your family telling them how importantyou think knowing your family health history is.Turn family health history into a youth project for school or church. It mayeven count toward earning Boy Scout and Girl Scout merit badges and otherawards.Have a recipe contest to turn family recipes into healthy treats and usethis activity to share stories about your family, including your family healthhistory.Make<strong>Family</strong><strong>Health</strong><strong>History</strong> aTradition

health.utah.<strong>gov</strong>/ genomics6Turkey Talk <strong>Health</strong> DiscussionIf you have time – and think your family would be open to a short talk – thinkabout having a “Turkey Talk” health discussion at your next family dinner. The“Turkey Talk” will tell your family why a family health history is important, howto collect one, and what to do with it.Here’s how the “Turkey Talk” works: Use the “Talk to your family” boxes toguide the conversation. Feel free to use your own words so your family feelscomfortable. Get everyone to join in but be mindful <strong>of</strong> family members whomay not want to talk about their family health history.1| INTRODUCE THE “TURKEY TALK”Start by telling your family why you think knowing your family health historyis important. Explain that health problems, like cancer, diabetes, and heartdisease, can run in families. Having a family history <strong>of</strong> these may increaseyour risk <strong>of</strong> getting them too.Talk toyour familyWhy should we know our familyhealth history?Because having a familyhistory <strong>of</strong> a health problem iscommon – almost everyone has afamily history <strong>of</strong> something.Because it is likely that some<strong>of</strong> us are at risk. Some <strong>of</strong> us mayknow it, and others may not.Because collecting a familyhealth history can be fun.And because there’s goodnews – knowing your familyhealth history could save your life.Even if a health problem runs inour family, we can make healthychoices to lower our chance <strong>of</strong>getting it.2| TALK ABOUT RISKFACTORS<strong>Family</strong> health history ismore than justgenetics. Families alsoshare their lifestyles, habitsand environment. Theseare called risk factorsbecause they can affectyour risk <strong>of</strong> having a healthproblem. Having a familyhistory <strong>of</strong> something isalso a risk factor. What doyour familymembers know aboutthese risk factors?Give family members achance to <strong>of</strong>fer ideasYou’re likely to get a lot <strong>of</strong>answers. Explain that riskfactors like diet, weight,exercise and smoking canaffect risk. For example,if you have a family history<strong>of</strong> diabetes, are overweight,and don’t exercise,your risk is even greaterthan someone who doesn’thave these risk factors.

Talk toyour familyWhat health problems tend torun in our family?3| Talk about howto collect a familyhealth historyNow that your family knowswhy you want to learn aboutyour family health history, it’stime to collect one. Remindyour family that this will beuseful for them personallyas well as for younger familymembers.family health history toolkitWhat other risk factors dowe have that may increase ourchance <strong>of</strong> getting theseproblems?Smoking, eating an unhealthydiet, being overweight, and notgetting enough exercise are riskfactors <strong>of</strong> health problems. Afamily history also increases aperson’s chance <strong>of</strong> getting aproblem.But the good news is, even ifwe have a family history <strong>of</strong>something, we can learn fromout past and protect our future.Eating a healthy diet, exercising,maintaining a healthy weight, andnot smoking are ways that we caneach stay healthy.We can’t change our genes butwe can make healthy choices tolower our risk for health problemsin our family.To get started, ask yourfamily to tell you a storyabout one <strong>of</strong> your familymembers, maybe a grandparent.Ask about where theyworked and lived or whatthey looked like – anything toget your family talking. Thenask if this person had anyhealth problems. Use the “10Questions to Ask Your<strong>Family</strong>” to guide yourquestions.4| Talk about whatto do if you areworried aboutyour riskA family may have a high risk<strong>of</strong> developing a healthproblem because several <strong>of</strong>their family members hadthe problem at a young age.These families should talkto their doctor or a geneticcounselor to learn what theycan do to prevent or delaythe problem. Genetic testingmay be helpful in somecases. But even for familieswith an increased risk, stepscan be taken to lower thechance <strong>of</strong> getting the healthproblem.Make<strong>Family</strong><strong>Health</strong><strong>History</strong> aTradition

health.utah.<strong>gov</strong>/ genomicsTalk toyour familySo, what can we do if weare worried about our familyhealth history?Talk to our doctor. Ourdoctor can tell us what our riskmay be for a health problem,based on our family healthhistory and other risk factorswe talked about. Our doctorcan also tell us about lifestylechoices and screening teststhat can lower our chances <strong>of</strong>having a problem.5| Ask family membersto look out for eachotherHere are two ideas to follow upwith family members who mayhave a tendency to develop ahealth problem based on yourfamily health history:Give family members a call,e-mail, letter, or visit some timeover the next three months totalk to them about your familyhealth history. A friendly remindergives you and your family achance to talk about your familyhealth history and ways to stayhealthy.Have family members pick a“health buddy” they feelcomfortable talking to. Askhealth buddies to talk about what they have learned from their family healthhistory. If your family didn’t know a lot about your family health history, askhealth buddies to find out more. <strong>Health</strong> buddies can also encourage each otherto talk to their doctor about what they can do to stay healthy.6| END THE TURKEY TALKThank your family for their help. Remind them again why you feel knowing yourfamily health history is important and ask your family to keep making familyheath history a tradition.Visit www.health.utah.<strong>gov</strong>/genomics or call the <strong>Health</strong> Resource Line at1-888-222-2542 to get free copies <strong>of</strong> this toolkit for your family members.

family health history toolkit<strong>Toolkit</strong> Development Team<strong>Utah</strong> <strong>Department</strong> <strong>of</strong> <strong>Health</strong>LDS <strong>Family</strong> <strong>History</strong> LibraryIntermountain <strong>Health</strong> Care, Clinical Genetics InstituteSalt Lake County Aging Services, <strong>Health</strong>y Aging ProgramHuntsman Cancer Institute<strong>Utah</strong> Genealogical AssociationHeirlines <strong>Family</strong> <strong>History</strong> and GenealogySpencer S. Eccles <strong>Health</strong> Sciences LibraryAmerican Heart Association<strong>Utah</strong>’s Local <strong>Health</strong> <strong>Department</strong>sDesign by: Jerman Design Incorporated

<strong>Family</strong> <strong>Health</strong> <strong>History</strong> <strong>Toolkit</strong>health.utah.<strong>gov</strong>/ genomicsThis toolkit was supported by cooperative agreement U58/CCU822802-03from the Centers for Disease Control and Prevention. The content is solelythe responsibility <strong>of</strong> the <strong>Utah</strong> <strong>Department</strong> <strong>of</strong> <strong>Health</strong> and does not necessarilyrepresent the <strong>of</strong>ficial views <strong>of</strong> the Centers for Disease Control and Prevention.

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