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	Use of Family History Information in Pediatric Primary Care and Public Health Dates: February 24-25, 2006 Location: Atlanta, Georgia Sponsor: National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention Presentations at the meeting discussed the current state of family history information use in pediatric settings, as well as specific conditions which may serve as models for use of family history information both in pediatric primary care and in public health.

Objectives | Agenda and Selected Presentations | References

Objectives:
The specific topics on the agenda for this meeting were intended to generate detailed, concrete discussions about these concepts, to address some unanswered questions:

• How can ascertainment and utilization of relevant family history information in pediatric primary care and public health settings be improved?

• What barriers need to be overcome in pediatric settings to facilitate use of family history information?

• How can lessons learned from the development of current tools be applied to pediatrics?

• What public health and pediatric research topics should be addressed in the development of pediatric family history tools?

• What types and which specific model conditions applicable to children could be incorporated into existing or new family history tools?

• How should the ACCE (Analytic validity, Clinical validity, Clinical utility, Ethical, legal and social issues) criteria be prioritized to select these conditions? (“Analytic validity” refers to how accurately family histories can be ascertained, “clinical validity” addresses how well these family histories predict risks for children and “clinical utility” deals with the utility of this information for prevention.)

• What ethical and economic issues need to be considered?

• How can we anticipate future needs for tool development?

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References

Journal Articles

Family History Information (General)

National Coalition for Health Professional Education in Genetics (NCHPEG) newsletter articles by Joann Bodurtha and Marianne Clancy

Bennett RL (2004) The family medical history. Prim Care 31:479-495

Guttmacher AE, Collins FS, Carmona RH (2004) The family history--more important than ever. N Engl J Med 351:2333-2336

Wattendorf DJ, Hadley DW (2005) Family history: the three-generation pedigree. Am Fam Physician 72:441-448

Assessments of Family History Use in Primary Care

Acheson LS, Wiesner GL, Zyzanski SJ, Goodwin MA, Stange KC (2000) Family history-taking in community family practice: implications for genetic screening. Genet Med 2:180-185

Frezzo TM, Rubinstein WS, Dunham D, Ormond KE (2003) The genetic family history as a risk assessment tool in internal medicine. Genet Med 5:84-91

Rich EC, Burke W, Heaton CJ, Haga S, Pinsky L, Short MP, Acheson L (2004) Reconsidering the family history in primary care. J Gen Intern Med 19:273-280

Family History and the ACCE Framework

Yoon PW, Scheuner MT, Khoury MJ (2003) Research priorities for evaluating family history in the prevention of common chronic diseases. Am J Prev Med 24:128-135

Yoon PW, Scheuner MT, Peterson-Oehlke KL, Gwinn M, Faucett A, Khoury MJ (2002) Can family history be used as a tool for public health and preventive medicine? Genet Med 4:304-310

Family History and Specific Conditions

Fragile X

Bailey DB, Skinner D, Sparkman K, Moore CA, Olney RS, Crawford DS (2002) Delayed diagnosis of Fragile X Syndrome - United States, 1990-1999. MMWR 51:740-742

Polycystic Kidney Disease

Taylor M, Johnson AM, Tison M, Fain P, Schrier RW (2005) Earlier diagnosis of autosomal dominant polycystic kidney disease: importance of family history and implications for cardiovascular and renal complications. Am J Kidney Dis 46:415-423

Birth Defects

Rasmussen SA, Mulinare J, Khoury MJ, Maloney EK (1990) Evaluation of birth defect histories obtained through maternal interviews. Am J Hum Genet 46:478-485

Romitti PA, Burns TL, Murray JC (1997) Maternal interview reports of family history of birth defects: evaluation from a population-based case-control study of orofacial clefts. Am J Med Genet 72:422-429

Coronary Artery Disease

Hunt SC, Gwinn M, Adams TD (2003) Family history assessment: strategies for prevention of cardiovascular disease. Am J Prev Med 24:136-142

Kardia SL, Modell SM, Peyser PA (2003) Family-centered approaches to understanding and preventing coronary heart disease. Am J Prev Med 24:143-151

Murabito JM, Nam BH, D'Agostino RB, Sr., Lloyd-Jones DM, O'Donnell CJ, Wilson PW (2004) Accuracy of offspring reports of parental cardiovascular disease history: the Framingham Offspring Study. Ann Intern Med 140:434-440

Public Health Uses for Family History Information

NCHPEG newsletter article by Karen Edwards

Evaluations of Family History Information

Johnson J, Giles RT, Larsen L, Ware J, Adams T, Hunt SC (2005) Utah's Family High Risk Program: bridging the gap between genomics and public health. Prev Chronic Dis 2:1-7

Marks D, Wonderling D, Thorogood M, Lambert H, Humphries SE, Neil HA (2002) Cost effectiveness analysis of different approaches of screening for familial hypercholesterolaemia. BMJ 324:1303-1306.

O'Loughlin J, Lauzon B, Paradis G, Hanley J, Levy E, Delvin E, Lambert M (2004) Usefulness of the American Academy of Pediatrics recommendations for identifying youths with hypercholesterolemia. Pediatrics 113:1723-1727

Salminen M, Vahlberg T, Ojanlatva A, Kivela SL (2005b) Effects of a controlled family-based health education/counseling intervention. Am J Health Behav 29:395-406

Web Resources

Family History Tools and Information

CDC Office of Genomics and Disease Prevention: Family History
NCHPEG newsletter, The Genetic Family History in Practice
U.S. Surgeon General’s Family History Initiative
March of Dimes: Genetics and Your Practice
American Medical Association: Family History Tools

Informatics Resources

HL7 overview
Continuity of Care Record (CCR) overview

General Resources

American Academy of Pediatrics
GeneTests
Genetic Alliance
Genetics Resources On the Web (GROW)

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Date: March 22, 2006
Content source: National Center on Birth Defects and Developmental Disabilities