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Family Health History Reporting is Sensitive to Small Changes in Wording

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2016

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Conway-Pearson, Liam S., Kurt D. Christensen, Sarah K. Savage, Noelle L. Huntington, Elissa R. Weitzman, Sonja I. Ziniel, Phoebe Bacon, Cara N. Cacioppo, Robert C. Green, and Ingrid A. Holm. 2016. “Family Health History Reporting is Sensitive to Small Changes in Wording.” Genetics in medicine : official journal of the American College of Medical Genetics :10.1038/gim.2016.45. doi:10.1038/gim.2016.45. http://dx.doi.org/10.1038/gim.2016.45.

Abstract

Purpose Family health history is often collected through single-item queries that ask patients whether or not their family members are affected by certain conditions. The specific wording of these queries may affect what individuals report. Methods: Parents of Boston Children’s Hospital patients were invited to participate in a web-based survey about the return of individual genomic research results about their children. Participants reported whether 11 types of medical conditions affected them or their family. Randomization determined whether or not participants were specifically instructed to consider their extended family. Results: 2,901 participants reported family health history. Those asked to consider their extended family were more likely to report a positive family history for 8 of 11 medical conditions. The largest differences were observed for cancer (65.1% vs 45.7%, p<0.001), cardiovascular conditions (72.5% vs 56.0%, p<0.001), and endocrine/hormonal conditions (50.9% vs 36.7%, p<0.001). Conclusions: Small alterations to the way family health history queries are worded can substantially change patient responses. Clinicians and researchers need to be sensitive about patients’ tendencies to omit extended family from health history reporting unless specifically asked to consider them.

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Family history, research methods, clinical practice

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