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Qureshi N, Wilson B, Santaguida P, et al. Collection and Use of Cancer Family History in Primary Care. Rockville (MD): Agency for Healthcare Research and Quality (US); 2007 Oct. (Evidence Reports/Technology Assessments, No. 159.)

  • This publication is provided for historical reference only and the information may be out of date.

This publication is provided for historical reference only and the information may be out of date.

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Collection and Use of Cancer Family History in Primary Care.

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Appendix B. Forms/Guides and Internet Family History Tools

To see the Forms and Guides, please select the link below. This link will take you to a PDF version of the forms and guides.

Forms and Guides

Internet Sites Accessed

Family History Tools Available on the Internet

TitleWebsite addressType
The U.S. Surgeon General's Family History Initiativehttp://www​.hhs.gov/familyhistory​/downloads/portraitEng.pdfFamily Health Portrait - Paper Version
Department of Health and Human Services (HHS)Website accessed on June 28th, 2007.Agencies involved in this project: Human Genome Research Institute (NHGRI), the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), the American Society of Human Genetics (ASHG) the Health Resources and Services Administration (HRSA), the National Society of Genetic Counselors and the Genetic Alliance
Family Disease Checklisthttp://www​.genetests​.org/servlet/access?id​=8888892&key​=TkUzWfsXb38xZ&fcn​=y&fw​=61uz&filename=​/tools/concepts/checklist.htmlGenetic Tools Website- Genetics Through a Primary Care Lens
Website accessed on June 28th, 2007.
Your Family Medical Historyhttp://www​.genetests​.org/servlet/access?id​=8888892&key​=xdmgIBahsKytS&fcn​=y&fw​=qgJE&filename=​/tools/concepts/medHist.htmlGenetic Tools Website - Genetics Through a Primary Care Lens
Website accessed on June 28th, 2007.
American Medical Association Adult Family History Formhttp://www​.ama-assn.org​/ama/pub/category/13333.htmlElectronic Family History Form
Website accessed on June 28th, 2007.
Myriad Tests Family History Questionnairehttp://www​.myriadtests​.com/doc/cancerhistory_fhq.pdfFamily History Questionnaire for Hereditary Cancers paper version
Website accessed on June 28th, 2007.
Utah Department of Healthhttp://health​.utah.gov​/genomics/familyhistory​/documents/Toolkit​/new%20entire%20toolkit.pdfFamily History Tool Kit - paper version
Website accessed on June 28th, 2007.
Norwich Union Health Treehttp://www​.norwichunion​.com/healthtree/index.htmElectronic Family History Builder (pedigree)
Website accessed on June 28th, 2007.
JamesLink: Personalized Cancer Risk Assessmenthttp://www​.jamesline​.com/patientsandvisitors​/prevention/cancergenetics​/#Start%20SessionInteractive tool that estimates cancer risk by reviewing patterns of cancer in a
Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research InstituteWebsite accessed on June 28th, 2007.
The Munroe-Meyer Institute for Genetics and Rehabilitation and the Eppley Cancer Center of the University of Nebraska Medical Centerhttp://app1​.unmc.edu/gencancer/Interactive Cancer Family Tree
Website accessed on June 28th, 2007.
Evanston Northwestern Center for Medical Geneticshttp://enh​.org/clinicalservices​/medicalgenetics​/mygenerations/Interactive Family History Tools
Website accessed on June 28th, 2007.
Genetic Susceptibility to Breast and Ovarian Cancer: Assessment, Counseling and Testing Guidelines American College of Medical Genetics Foundationhttp://www​.health.state​.ny.us/nysdoh/cancer​/obcancer/append11.htmSample Cancer Family History Questionnaire
Website accessed on June 29th, 2007.
Scoring Criteria for the Family History Tools (FHT)
AttributeOriginal scoring rangeCorrected scoring
1 = lowest score; 5 =highest score
Length of tool1 = too shortScore 1 = 1
3 = adequate sizeScore 2 = 3
5 = too longScore 3 = 5
Score 4 = 3
Score 5 = 1
Ease of completion1 = very difficultNo change
5 = very easy
Need specialist knowledge to complete FHT1 = need specialist knowledgeNo change
5 = complete without knowledge input
Minimum collect details on ALL 1st degree relatives1 = no details collectedNo change
5 = details collected on all 1st degree relatives
Clarity of family history collection including appropriate structure, layout & logical sequence1 = poor clarityNo change
5 = excellent clarity
Scoring of Available Family History Tool
TitleLengthEaseSpecialist knowledge1st Degree relativesClarityTOTAL ScoreComments
The U.S. Surgeon General's Family History Initiative3455320
AAFP Family Disease Checklist5333216
AAFP Your Family Medical History3455320Ethnicity reported
American Medical Association Adult Family History Form3235215Ethnicity reported
Myriad Tests Family History Questionnaire3431213
Utah Department of HealthNENENENENENENOT enough information on tool to evaluate
Norwich Union Health Tree3453217
JamesLink: Personalized Cancer Risk AssessmentAssessed as part of article by Sweet et al.*
The Munroe-Meyer Institute3434216
Evanston Northwestern Center for Medical GeneticsNENENENENENENOT enough information on tool to evaluate
Guidelines American College of Medical Genetics Foundation3454319

FHTs were independently scored by 2 assessors & any discrepancy resolved through planned consensus discussion using the criteria above

*

Sweet KM, Bradley TL, Westman JA. Identification and referral of families at high risk for cancer susceptibility. Journal of Clinical Oncology 2002 Jan 2;20(2):528–37.

Abbreviations: NE=not evaluated

Reviews Available on the Internet describing Family History Tools

TitleWebsite addressType
The Genetic Family History In Practice Newsletter - Spring 2005http://www​.nchpeg.org​/newsletter/inpracticespr05.pdfNCHPEG Newsletter for Health Care Professionals
Website accessed on June 28th, 2007.
The Genetic Family History In Practice Newsletter - Winter 2005http://www​.nchpeg.org​/newsletter/inpracticewinter05.pdfNCHPEG Newsletter for Health Care Professionals
Website accessed on June 28th, 2007.
The Genetic Family History In Practice Newsletter - Spring 2004http://www​.nchpeg.org​/newsletter/inpracticespr04.pdfNCHPEG Newsletter for Health Care Professionals
Website accessed on June 28th, 2007.
The Genetic Family History In Practice Newsletter - Spring 2003http://www​.nchpeg.org​/newsletter/inpracticespr03.pdfNCHPEG Newsletter for Health Care Professionals
Website accessed on June 28th, 2007.

Summary Reports/Reviews/Health Technology Assessments Available on the Internet

TitleWebsite addressType
BRCA and Breast/Ovarian Cancer — Disorder Settinghttp://www​.cdc.gov/genomics​/gtesting/file​/print/FBR/BCDisSet.pdfDraft Genetic Test Review
Website accessed on June 28th, 2007.
Decision aid for the introduction of population-based genetic screening programs (work in progress).www​.aetmis.gouv.qc.caAgence d'évaluation des technologies et des modes d'intervention en santé (AETMIS) Report
Website accessed on June 28th, 2007.
Contribution of BRCA1/2 Mutation Testing to Risk Assessment for Suceptibility to Breast and Ovarian Cancerhttp://www​.aetmis.gouv​.qc.ca/site/download​.php?f=b14cef3dbf7ba791b4bdf9557f9d4e6dSummary Report from Agence D'Évaluation des Technologies et des Modes D'Intervention en Santé Summary Report
Website accessed on June 28th, 2007.
Predictive Genetic Testing for Breast and Prostate Cancerwww​.ccohta.caCanadian Coordinating Office for Health Technology Assessment (CCOHTA) Technology Report
Website accessed on June 28th, 2007.
Molecular Diagnosis for Hereditary Cancer Predisposing Syndromes: Genetic Testing and Clinical Impactwww​.ccohta.caCanadian Coordinating Office for Health Technology Assessment (CCOHTA) Technology Report
Website accessed on June 28th, 2007.
BRCA1 and BRCA2 Predictive Genetic Testing for Breast and Ovarian Cancers: Asystematic Review of Clinical Evidencewww​.ccohta.caCanadian Coordinating Office for Health Technology Assessment (CCOHTA) Technology Report
Website accessed on June 28th, 2007.

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